Topamax – The Price of Loss

All my desires shut down, and depression begins.

This post is part five of a six-part series on my personal experiment taking Topamax for weight loss. Here’s a table of contents for the whole series.


Over the last seven days, I’ve been involved in a deeply personal experiment. I’ve been taking Topamax, an anti-seizure medication, in order to take advantage of two of its well-known side effects: appetite suppression and weight loss.

On this site and in personal conversations with friends, I’ve stressed the very positive dimensions of this experience. Today, at the end of Week One, it’s time to be equally frank about the downside to taking Topamax … and to be brutally honest about why, just seven days into the experiment, I’m cancelling the experiment and coming off the drug.

Progress: My Weight Loss

At the end of one week on Topamax, I’ve lost six pounds. This weight loss required no effort whatsoever. Apart from intentionally drinking ten glasses of water per day, I did not alter my routine. Some of this weight loss was water loss — Topamax dehydrates you aggressively, even when you’re drinking water like a fish. Most of it came about because, while on Topamax, I lost all interest in food.

The First Four Days

My first four days on Topamax amazed me. I’ve written in detail about the shock of finding myself in a world where food and hunger were simply not factors in life. Other side effects, mostly pleasant, were also apparent within four days of taking the drug:

I was mellow. Make that melloooooooooow. No highs, no lows — nothing bothered me. I experienced the world at arm’s length, through a kind of muted objectivity that was completely unlike my usual approach to life.

I was focused. Normally, I have about twenty-seven things going on in my head at once. Right now, as I’m writing this, I’m thinking about an over-due proposal, a letter I need to write for a new client, a movie I want to see, the number of calories in a treat I might eat later on, whether I can squeeze in a viewing of Farscape this afternoon, and the plot line for a novel about a series of real and threatening events in my hometown. On Topamax, my head was silent. I thought about whatever was in front of me — and nothing else.

I lost all compulsions. As it turned out, Topamax didn’t just curb my appetite for food … it also curbed my appetites in general. That movie I’d been longing to see? Now I could take it or leave it. That Tarot deck I couldn’t wait to buy? Suddenly, owning it meant absolutely nothing. That book I’d been dying to read? It could wait.

Hmmm. Weight loss. Mellow moods. Mental focus. No inclination to spend money. Sounds like paradise, right?

Trouble in Paradise

Though I wouldn’t vocalize it until Day Five, I knew by Day Three that I was in trouble. Here’s why:

I didn’t feel like myself. While on Topamax, I had the growing impression that I was an impostor — someone brought in to play the part of Mark. I looked like Mark. I sounded like Mark. I knew a set of responses, of general rules, that made it possible for me to simulate Mark. But inside, I wasn’t Mark. The things that gave Mark joy left me unimpressed. The things that irritated Mark didn’t matter to me. In the end, my passions define me — and without passion, I felt alien, unstructured, lost.

I lost all interest in sex. In the giddy joy over my loss of interest in food, this one took some time to sink in. In fact, during my first day on the drug, a friend asked about this … and I honestly replied, “I don’t see any difference there.” Four days later, though, I was shocked to realize I hadn’t had a single sexual thought — not even the slightest twitch — in more than ninety-six hours.

No fleeting fantasy. No daydream. No appreciative glances at passing strangers. Nothing. Realizing this, I tried to muster up sexual energy by calling up a favorite fantasy or two … and discovered, with something like horror, that I couldn’t even maintain interest long enough to keep a fantasy in mind. As it turned out, Topamax curbed all my appetites — and did so with such sly effectiveness, I didn’t even notice my sexual passion was gone until four days after the fact.

Morbid thoughts. This is the most difficult thing to write about, so I’ll be brief and frank. While on Topamax, on Day Five, I began to think of myself as dead. The image of an animated corpse came to mind: passionless, slack-jawed, kept in motion by chemical magic. I fancied that I ate what little I ate in order to maintain the illusion of life — to trick the living people around me into believing that I was still alive.

Worse than this: the idea of being dead didn’t bother me. It was not upsetting or disturbing in the least … because, while on Topamax, nothing was.

The Food Court Scene

For me, the breaking point came at Lenox Square Mall, in the Food Court.

Having had only bites of breakfast, I waited too long — past 3:00 — for lunch. I still wasn’t hungry (on Topamax, I believe I could have starved to death without getting hungry), but I was faint and weak … so Clyde and I made a beeline for the closest, fastest food option.

We ate in relative silence. While I was on Topamax, silence became more and more a part of our routine. Clyde’s quiet anyway; normally, I’m chattering away. On Topamax, though, I would sit quietly in my seat, mellow and focused on the task at hand: trying to be interested in food.

Without warning, I burst into tears. My face contorted with the effort of concealing the emotion, but the force of the feeling was strong enough to break through. “I don’t feel like myself!” I exclaimed. “I”m not myself! And I like being me. I want to be me! I don’t want to live like this!”

As quickly as it came, it passed. I found myself sitting in a body with tears on its cheeks, but with little more than an intellectual awareness of why those tears were there.

“I don’t know what prompted that,” I said. My voice was level, unnaturally calm. “I don’t know where that came from.” I went back on auto-pilot, lifting a forkful of bad Japanese stir-fry to my mouth and chewing it without joy.

In retrospect, I think I do know where that message came from: I think the part of me I lost — the part of me I love, the part of me that makes me who I am, managed to get one last, desperate message through the Topamax barrier.

Trapped in a nightmare, I was trying to wake myself up.


Ready to read more? Read the last post in this series here.

Mark McElroy

I'm a husband, mystic, writer, media producer, creative director, tinkerer, blogger, reader, gadget lover, and pizza fiend.

343 comments

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  • Mark,For a much safer approach to weight loss with an increase in energy, check our my website:www.karrensalter.isagenix.comI’m thrilled with my “inches and pounds” loss – the products nourish and revitalize instead of starving the body.I just returned from a week in Paris, where I ate everything I wanted, and didn’t gain an ounce.Give it a try!Karren

  • H Mark, I want to thank you for this research. My 11 year old was just put on topamax yesterday for tourettes syndrome (the risperdal he was taking made him gain weight at an alarming rate.) Hearing of your side effects gives me something to go on, as I don’t know whether he could tell me what he’s feeling in his own words. Thank you so much again.

  • I am so glad to find someone else with the same problems with Topamax that I have. I started taking Topamax almost a year ago for migraines. I had a migraine that lasted from July to December of last year and I passed out because of the migraines. They put me on the Topamax and it made my migraines go away. I then started losing weight immediately. Now, I am underweight because I have no appetite. The doctor won’t take me off of it. Since April I have lost 30 pounds. I’ve lost 65 pounds all together. Sounds outragous doesn’t it. I now weigh 117lbs and lose at least a half a pound every other day. The doctor just told me to drink ensure and take a multi vitamin everyday. I hate Topamax.

  • I have been on topamax with increases each week for three weeks. I do not know if it is helping yet I cant quite tell for sure. I use it for depression. I think I might have some weight loss but want more. I was taking zoloft with it but have stopped taking it. I have very severe depression and I am an alcoholic with 6 months sobriety. I go to the doctor on November 7! Does anyone have suggestions for medicines that might work for me????

  • Hello,Mark this is quite a nice site you have going here. I am to start topamax tonight,1 25mg. tabletare there any people here that have fibromyalgia and if so how is it working for you. I’m a little nervous about taking it tonight but i’m gonna pray and hope that I can get good sleep and relief from pain. I’ll let you all know and please if you have fibromyalgia and just alot of stress and take it please email me@ bailablegwen@hotmail.comI‘M gonna take it to go to sleep check here tomorrow so that I can tell you how it affected me.thanks for all of the postings,and I plan to drink alot of water in the morning…email me…

  • Has anyone used Topamax for Bruxism,T.M.J.Teeth Grinding? I suffer from these and my teeth have been fractured and flattened and it’s getting worse. I grind at night in my sleep. I’ve chewed,bitten groves in my cheeks. I have headaches and jaw pain. Splints and appliences are more then I can afford. Info on this or any other meds that can treat these comditions would be greatly appreciated,Thanks,Penelope

    • I have been on Topamax for years, and also have TMJ and grind my teeth not only in my sleep but in every waking hour.. Topamax does nothing for it. I use it for my migraines.

  • I have been on Topamax for about a year and a half now to control my mood swings. Interesting that I found out recently that it was also to control migranes. It definately has helped both but now I can’t afford it so I am having to ween myself off of it. A word of caution to those of you that do take it, watch missing doses! Because I have noticed that it has triggered some AWFUL migranes when I’ve gone off of it(cold turkey) or missed a dose. In fact, I was just in the ER last week with one. That is why I am now (slowly) weening myself off, in fear of the migranes. When I was taking Topamax regularly, it worked great! Yes I had weightloss, which I didn’t mind because I had previously been on Nortryptiline and it caused me to gain 30lbs. Now I am suffering from serious “Brief Reactive Pyschosis” self diagnosed of course. And I don’t know if the Topamax dosage isn’t enough anymore or what, but like i said I can’t afford it….

  • Carla, not more than usual. Which is quite a bit but nothing to get upset about I guess. I really didn’t notice major side effects except for weightloss and I was happy about that. I’m hoping that when I go off of it, I don’t start gaining a bunch of weight….we’ll see.

  • Can anyone out there please give me some advice? I’ve been taking topamax since Nov/2003 for migraine prevention and it has done pretty well for this, but my problem is I’m experiencing a tremendous amount of hair loss. I had very naturally thick hair which has depleted to the point where you can see my scalp in the front of my hairline. I’m to the point of stopping this medication regardless of it’s benefits. Has anyone else experienced this same side effect, and if so, could you tell me after stopping topamax how long before your hair was back to normal? Thanks for your help!!

  • I have been taking topamax for about a week and a half now, I too am having that sinus headache thing. My Dr. thinks t-max may be a miracle drug for me if I can get through the side effects. I am bipolar, I had a baby a year ago and finally relented to go on meds. I was diagnosed almost five years ago. I also suffer from anorexia and bulimia. I was put on lamictal (yuck) then on lithium, which I really liked. The side effects were bad initially but went away. However with my anorexia and body image problems I hate myself, refuse to have sex with my husband at all anymore which is causing serious marital problems. I also think of suicide frequently and have now started to think of cutting myself all the time which is a problem considering I work with and around razor s at my job 24/7. I am still at a low dose of t-max and cannot wait to increase my dose so that hopefully I will start to lose weight but also start to controll my moods. I

  • i’ve been takink topamax for 3 weeks for weight loss. I haven’t lost much weight but vivid dreams.not bad just vivid sometimes i wake up confused but i still remeember i’n on topamax.i like it.I also used to like mushrooms ,acid etc but that was 25 years ago.I can’t wait to go to bed at night it actually helps me sleep.

  • Every BODY is different! What works for some may not work for others. I’ve been taking it for 2 years for seizures & migranes post a very serious head fracture,death & coma. 150mg/day no side effects, LITTLE weight loss ( thank goodness, I only weigh 95lbs anyway) and I have more than enough energy and life and DESIRE than my “poor” husband can handle. I love the fact it DOESN’T have the other side effects with bone marrow suppression, liver failure, and deadly RASH that many of the other AED’s have (l have a family history of luekemia,lymphoma & diabetes). CAN’T imagine being without it…

  • Reading this site, wow. I just stopped taking Topamax (cold turkey, Dr’s orders). I was on 200mg, 1 pill, twice a day for OCD/anxiety etc. The side affects were too intense to me. The first few week symptoms, nausea, diahrea, pins and needles in the feet, etc – but it only seemed to get worse. I got a cold/cough, then got a flu shot, got worse, then got better, then I began to have sleeping problems where I could wake up feeling like my arms and chest and even my THROAT were practically numb, and I was having apnea like problems. I have asthma, so this was something I could not handle. And it wasn’t getting any better. My doc said the Topamax was causing my nerves to react, hence the numbing and tingling, and it could be causing me to have light sleep, which could be making me wake up during these episodes. I don’t know what it is, but I stopped taking Topamax yesterday and last night I slept like a baby. I hope that it only continues. I plan on going to the Dr to check for an upper respritory infection or anything, also a sleep lab if it continues. It’s scary! But, the Topamax did nothing for me but give me side affects, so for those that it helps, I am glad for you, but for those that it doesn’t (for psychiatric issues) don’t stay on it.

  • Regarding my post above, those of you who have stopped Topamax, did you have any side affects? How did you do it? Cold turkey? Weaning? I found it odd that my Psych said I could just stop taking it, but she is also a Pharmachologist, so I trust her. I just don’t want to have any crazy effects.

  • Just an update: Sad to say I had to go back to 100mg in the morning and 100 at night. I started to have breakthrought episodes of cycling again. I’m just so frustrated. At this time, there’s nothing more out there for me. So I guess it’s good-by brain.

  • I’ve been on Topamax for about 3 months, and recently been moved up to 100mg- not had too major of side effects at all, not too much weight loss, has done well with my bipolar1/2 disorder. What I have noticed is whenever I have exceeded one drink (which I know I shouldn’t do, but I work in the music business, its gonna happen) I literally start to ‘trip’- I have hallucinations with my disorder, but this seems to always coincide with my alcohol intake, which has never happened before, is this possibly a drug interaction? has this happened to anyone before?thanksJen

  • Hello,I am 22 and I have been taking Topaomax now for about a month for Migraines, and Bipolar Disorder, for the first week my Neurologist had me take 25mg once a day, then twice a day since.I had glanced at a few of these messages before taking it and had looked it up on MSN health, called my regular Doc, and even talked to the pharm. when I picked it up. I saw the side effects it could have but my regular doctor and the pharm. told me not to worry, many people take it and dont have many side effects at all, and even an aspirin bottle could scare you if you know the side effects. Well since I have been on it I have been very anxious, my feet and hands go numb, and/or start tingling all the time, I cant drink any carbonated beverage, I am nauseus after i eat, I have had a cold for almost the whole time, (I could have just caught from a customer at work but after reading this just made me wonder) have had constant tooth aches, and sometimes I just feel like Im really just a stranger observing my own life, and I want to crawl out of my own skin. The thing is the only side effect I actually didnt mind getting, weight loss, I havent gotten, I still am hungry all the time. I also have been on Inderol LA for almost 2 years now for Chronic headaches. My migraines are dibilitating, and my Bipolar isolates me, but if the side effects get worse I dont know what I will do. Does anyone know anything that helps both that doesnt have as many side effects??Heather

  • Mark, Wow what you wrote is exactly how I felt.I took it for Migraines and it did help with that but my hair started falling out . It has been 5 weeks since I last took it and it is still falling out. I did not feel like my self. I would drive down the road and think about what it would feel like to smash my car into the wall. It was crazy. I did not care about anything. I was only on 25mg at bedtime.Everyone else liked me because I seemed happy and a totally different person( not in pain all the time) My migraines are daily. I am on Ms contin as well because my facial pain and migraines are so severe(nerve damage)

  • Mark, What do you mean by it really hits the temporal lobes? I am diagnosed w/complex partial seizures & w/ some headaches. I admit my vision is changing. I’m losing weight fast, but I had started eating better right before I started topamax. Yes, I agree “dopamax” is a perfect generic name for it. I did hallucinate that I had lizards running all over me but heh, I saw spiders all over me when I was about 6 from another antiseizure med. I am a mellow person normaly, but I see some others feel more mellow. That will be great.I work in an Alzheimer Lockdown Unit! Others, think positive. Sometimes things take time. However not always for best. Each person is their own.

  • I have been on Topamax since March for migraines that will last for more than a week. And I’d get a couple of them a month. I’m on 100 mg of it once a day. I started out at 50 mg. I’ve lost 37 pounds from March to July. Sometimes I have to force myself to eat. But I was carrying around a little extra weight before, and I’m 6’1″. When I first went on it, it would take me 45 minutes to eat a sandwich.

    I still have tingling in my hands, and soda tastes flat. Some foods taste too salty to me. Otherwise, I have no other side effects. I still get migraines that aren’t as bad as before, so I think my dose needs to be increased. I had been on so many other meds before to prevent migraines, but NOTHING made a difference. They all just made me gain weight. Topamax has really changed my life.

  • I’m freaked out after taking topamax! Never again! I took one pill two nights ago and within an hour felt as if I had totally lost my mind. I became totally confused, couldn’t focus, think or barely see. I didn’t want to call 911 because I thought I would be put in a straight jacket and locked up in a padded room the rest of my life. I called a friend and talked for a while and was able to calm down a bit. 12 hours later I had to go to the ER because my face, arms, fingers, etc. were going numb. In the ER I was given a prescription for Xanax. They said that would help with the anxiety but truly the only thing it’s helped is the tingling and numbness. I still feel soooo weird in my head–extremely dizzy. I’m afraid I’ll never be normal again!!! They said it may be 2-3 days before the topamax is out of my system, I hope it’s soon. This is creepy!

  • Mark,For a much safer approach to weight loss with an increase in energy, check our my website:www.karrensalter.isagenix.comI’m thrilled with my “inches and pounds” loss – the products nourish and revitalize instead of starving the body.I just returned from a week in Paris, where I ate everything I wanted, and didn’t gain an ounce.Give it a try!Karren

  • H Mark, I want to thank you for this research. My 11 year old was just put on topamax yesterday for tourettes syndrome (the risperdal he was taking made him gain weight at an alarming rate.) Hearing of your side effects gives me something to go on, as I don’t know whether he could tell me what he’s feeling in his own words. Thank you so much again.

  • I am so glad to find someone else with the same problems with Topamax that I have. I started taking Topamax almost a year ago for migraines. I had a migraine that lasted from July to December of last year and I passed out because of the migraines. They put me on the Topamax and it made my migraines go away. I then started losing weight immediately. Now, I am underweight because I have no appetite. The doctor won’t take me off of it. Since April I have lost 30 pounds. I’ve lost 65 pounds all together. Sounds outragous doesn’t it. I now weigh 117lbs and lose at least a half a pound every other day. The doctor just told me to drink ensure and take a multi vitamin everyday. I hate Topamax.

  • I have been on topamax with increases each week for three weeks. I do not know if it is helping yet I cant quite tell for sure. I use it for depression. I think I might have some weight loss but want more. I was taking zoloft with it but have stopped taking it. I have very severe depression and I am an alcoholic with 6 months sobriety. I go to the doctor on November 7! Does anyone have suggestions for medicines that might work for me????

  • Hello,Mark this is quite a nice site you have going here. I am to start topamax tonight,1 25mg. tabletare there any people here that have fibromyalgia and if so how is it working for you. I’m a little nervous about taking it tonight but i’m gonna pray and hope that I can get good sleep and relief from pain. I’ll let you all know and please if you have fibromyalgia and just alot of stress and take it please email me@ bailablegwen@hotmail.comI‘M gonna take it to go to sleep check here tomorrow so that I can tell you how it affected me.thanks for all of the postings,and I plan to drink alot of water in the morning…email me…

  • Has anyone used Topamax for Bruxism,T.M.J.Teeth Grinding? I suffer from these and my teeth have been fractured and flattened and it’s getting worse. I grind at night in my sleep. I’ve chewed,bitten groves in my cheeks. I have headaches and jaw pain. Splints and appliences are more then I can afford. Info on this or any other meds that can treat these comditions would be greatly appreciated,Thanks,Penelope

  • I have been on Topamax for about a year and a half now to control my mood swings. Interesting that I found out recently that it was also to control migranes. It definately has helped both but now I can’t afford it so I am having to ween myself off of it. A word of caution to those of you that do take it, watch missing doses! Because I have noticed that it has triggered some AWFUL migranes when I’ve gone off of it(cold turkey) or missed a dose. In fact, I was just in the ER last week with one. That is why I am now (slowly) weening myself off, in fear of the migranes. When I was taking Topamax regularly, it worked great! Yes I had weightloss, which I didn’t mind because I had previously been on Nortryptiline and it caused me to gain 30lbs. Now I am suffering from serious “Brief Reactive Pyschosis” self diagnosed of course. And I don’t know if the Topamax dosage isn’t enough anymore or what, but like i said I can’t afford it….

  • Carla, not more than usual. Which is quite a bit but nothing to get upset about I guess. I really didn’t notice major side effects except for weightloss and I was happy about that. I’m hoping that when I go off of it, I don’t start gaining a bunch of weight….we’ll see.

  • Can anyone out there please give me some advice? I’ve been taking topamax since Nov/2003 for migraine prevention and it has done pretty well for this, but my problem is I’m experiencing a tremendous amount of hair loss. I had very naturally thick hair which has depleted to the point where you can see my scalp in the front of my hairline. I’m to the point of stopping this medication regardless of it’s benefits. Has anyone else experienced this same side effect, and if so, could you tell me after stopping topamax how long before your hair was back to normal? Thanks for your help!!

  • I have been taking topamax for about a week and a half now, I too am having that sinus headache thing. My Dr. thinks t-max may be a miracle drug for me if I can get through the side effects. I am bipolar, I had a baby a year ago and finally relented to go on meds. I was diagnosed almost five years ago. I also suffer from anorexia and bulimia. I was put on lamictal (yuck) then on lithium, which I really liked. The side effects were bad initially but went away. However with my anorexia and body image problems I hate myself, refuse to have sex with my husband at all anymore which is causing serious marital problems. I also think of suicide frequently and have now started to think of cutting myself all the time which is a problem considering I work with and around razor s at my job 24/7. I am still at a low dose of t-max and cannot wait to increase my dose so that hopefully I will start to lose weight but also start to controll my moods. I

  • i’ve been takink topamax for 3 weeks for weight loss. I haven’t lost much weight but vivid dreams.not bad just vivid sometimes i wake up confused but i still remeember i’n on topamax.i like it.I also used to like mushrooms ,acid etc but that was 25 years ago.I can’t wait to go to bed at night it actually helps me sleep.

  • Every BODY is different! What works for some may not work for others. I’ve been taking it for 2 years for seizures & migranes post a very serious head fracture,death & coma. 150mg/day no side effects, LITTLE weight loss ( thank goodness, I only weigh 95lbs anyway) and I have more than enough energy and life and DESIRE than my “poor” husband can handle. I love the fact it DOESN’T have the other side effects with bone marrow suppression, liver failure, and deadly RASH that many of the other AED’s have (l have a family history of luekemia,lymphoma & diabetes). CAN’T imagine being without it…

  • Reading this site, wow. I just stopped taking Topamax (cold turkey, Dr’s orders). I was on 200mg, 1 pill, twice a day for OCD/anxiety etc. The side affects were too intense to me. The first few week symptoms, nausea, diahrea, pins and needles in the feet, etc – but it only seemed to get worse. I got a cold/cough, then got a flu shot, got worse, then got better, then I began to have sleeping problems where I could wake up feeling like my arms and chest and even my THROAT were practically numb, and I was having apnea like problems. I have asthma, so this was something I could not handle. And it wasn’t getting any better. My doc said the Topamax was causing my nerves to react, hence the numbing and tingling, and it could be causing me to have light sleep, which could be making me wake up during these episodes. I don’t know what it is, but I stopped taking Topamax yesterday and last night I slept like a baby. I hope that it only continues. I plan on going to the Dr to check for an upper respritory infection or anything, also a sleep lab if it continues. It’s scary! But, the Topamax did nothing for me but give me side affects, so for those that it helps, I am glad for you, but for those that it doesn’t (for psychiatric issues) don’t stay on it.

  • Regarding my post above, those of you who have stopped Topamax, did you have any side affects? How did you do it? Cold turkey? Weaning? I found it odd that my Psych said I could just stop taking it, but she is also a Pharmachologist, so I trust her. I just don’t want to have any crazy effects.

  • Just an update: Sad to say I had to go back to 100mg in the morning and 100 at night. I started to have breakthrought episodes of cycling again. I’m just so frustrated. At this time, there’s nothing more out there for me. So I guess it’s good-by brain.

  • I’ve been on Topamax for about 3 months, and recently been moved up to 100mg- not had too major of side effects at all, not too much weight loss, has done well with my bipolar1/2 disorder. What I have noticed is whenever I have exceeded one drink (which I know I shouldn’t do, but I work in the music business, its gonna happen) I literally start to ‘trip’- I have hallucinations with my disorder, but this seems to always coincide with my alcohol intake, which has never happened before, is this possibly a drug interaction? has this happened to anyone before?thanksJen

  • Hello,I am 22 and I have been taking Topaomax now for about a month for Migraines, and Bipolar Disorder, for the first week my Neurologist had me take 25mg once a day, then twice a day since.I had glanced at a few of these messages before taking it and had looked it up on MSN health, called my regular Doc, and even talked to the pharm. when I picked it up. I saw the side effects it could have but my regular doctor and the pharm. told me not to worry, many people take it and dont have many side effects at all, and even an aspirin bottle could scare you if you know the side effects. Well since I have been on it I have been very anxious, my feet and hands go numb, and/or start tingling all the time, I cant drink any carbonated beverage, I am nauseus after i eat, I have had a cold for almost the whole time, (I could have just caught from a customer at work but after reading this just made me wonder) have had constant tooth aches, and sometimes I just feel like Im really just a stranger observing my own life, and I want to crawl out of my own skin. The thing is the only side effect I actually didnt mind getting, weight loss, I havent gotten, I still am hungry all the time. I also have been on Inderol LA for almost 2 years now for Chronic headaches. My migraines are dibilitating, and my Bipolar isolates me, but if the side effects get worse I dont know what I will do. Does anyone know anything that helps both that doesnt have as many side effects??Heather

  • Mark, Wow what you wrote is exactly how I felt.I took it for Migraines and it did help with that but my hair started falling out . It has been 5 weeks since I last took it and it is still falling out. I did not feel like my self. I would drive down the road and think about what it would feel like to smash my car into the wall. It was crazy. I did not care about anything. I was only on 25mg at bedtime.Everyone else liked me because I seemed happy and a totally different person( not in pain all the time) My migraines are daily. I am on Ms contin as well because my facial pain and migraines are so severe(nerve damage)

  • Mark, What do you mean by it really hits the temporal lobes? I am diagnosed w/complex partial seizures & w/ some headaches. I admit my vision is changing. I’m losing weight fast, but I had started eating better right before I started topamax. Yes, I agree “dopamax” is a perfect generic name for it. I did hallucinate that I had lizards running all over me but heh, I saw spiders all over me when I was about 6 from another antiseizure med. I am a mellow person normaly, but I see some others feel more mellow. That will be great.I work in an Alzheimer Lockdown Unit! Others, think positive. Sometimes things take time. However not always for best. Each person is their own.

  • I have been on Topamax since March for migraines that will last for more than a week. And I’d get a couple of them a month. I’m on 100 mg of it once a day. I started out at 50 mg. I’ve lost 37 pounds from March to July. Sometimes I have to force myself to eat. But I was carrying around a little extra weight before, and I’m 6’1″. When I first went on it, it would take me 45 minutes to eat a sandwich.

    I still have tingling in my hands, and soda tastes flat. Some foods taste too salty to me. Otherwise, I have no other side effects. I still get migraines that aren’t as bad as before, so I think my dose needs to be increased. I had been on so many other meds before to prevent migraines, but NOTHING made a difference. They all just made me gain weight. Topamax has really changed my life.

  • I’m freaked out after taking topamax! Never again! I took one pill two nights ago and within an hour felt as if I had totally lost my mind. I became totally confused, couldn’t focus, think or barely see. I didn’t want to call 911 because I thought I would be put in a straight jacket and locked up in a padded room the rest of my life. I called a friend and talked for a while and was able to calm down a bit. 12 hours later I had to go to the ER because my face, arms, fingers, etc. were going numb. In the ER I was given a prescription for Xanax. They said that would help with the anxiety but truly the only thing it’s helped is the tingling and numbness. I still feel soooo weird in my head–extremely dizzy. I’m afraid I’ll never be normal again!!! They said it may be 2-3 days before the topamax is out of my system, I hope it’s soon. This is creepy!

  • You mention that you tried to “muster up a sexual fantasy or two”. As I find myself having grown quite old, I no longer am able to muster up anything vaguely sexual. Would it be too much to ask you to share just one of yours? Your friend, John

  • You sound as if maybe you alreay had some major promblems before taking this medicine.I take Topamax for Seizures & Migraines, and have none on the side effects you taked about, yes there is weight loss, but very mild, about 3% of body weight.

  • Did I have “major issues” before starting the drug? I don’t think so; I’m well-known for keeping a fairly steady keel.

    However, as a result of publishing the material on Topamax, I’ve heard from at least a dozen other folks who, while taking it for weight loss, experienced everything I did, from depression to loss of libido. (A quick Google search will also lead you to posts by many people who experienced disturbing effects while on Topamax).

    Meantime, I’m glad Topamax is working so well for you, and that you’ve experienced none of the side effects that impacted me so strongly.

  • Yib yib yib-bi-dee-gib!

    Sorry it was a bummer for you Mark. I don’t think it is approved as a weight loss drug, no?

    Life saver for migraines though. Approved. And as an AED. Works for some for bipolar. Works for me. Side effects? Yes. Improve with time?. Yes. Worth it? Yes. My disease is a killer. Rather be red than dead as they say.

    Peace,

    Yib yib yib-bi-dee-gib!

  • I cannot even drive a car because my brain is so foggy! I am taking the damn Topamax for the pain of fibromyalgia but hey I still hurt I just lost my ability to think about it!!! Most days it’s a major accomplishment if I can figure out how to bathe and dress myself. I am a voracious reader and my books are laying dormant on the shelves because I cannot concentrate enough to make sense of even the simplest predictable romance novel. My doctor won’t listen to me because as you know they always think they know best! I too want myself (and my brain) to return.

  • Hey I understand about the Topamax. I’ve been taking it for three years for bipolar and I like the weight loss. I am a Registered Nurse and I am just now researching it, stupid me. I have experienced memory loss and depression and am fixing to have my doctor’s switch my meds, it’s just not worth it. Paula

  • Hey I understand about the Topamax. I’ve been taking it for three years for bipolar and I like the weight loss. I am a Registered Nurse and I am just now researching it, stupid me. I have experienced memory loss and depression and am fixing to have my doctor’s switch my meds, it’s just not worth it. Paula

  • Hi,I was recently put on Topamax and I am up to 100 mg a day. My Psychiatrist’s plan is to work me up to a total of 200 mg a day. I feel a little spacy, but not too bad. I do feel more mellow which is good for my panic disorder. I wouldn’t mind some weight loss:) So far, no really bad effects. It has been only a week.

  • Have 10 yr old only had 2 seizures. He suppossedlyhas brain trauma from something unknoiwn like meningitis they say. I am concerned that this is the first drug of choice in a child. Do you know of any children on it?

  • Hi, Lee. Thanks for stopping by.

    I’m sorry, I don’t know of any children on Topamax.

    I should also note that my personal experience with the drug was limited to a wrong-headed attempt to use it for weight control. As a result, it’s highly unlikely that my experience can be used to shed light on your son’s options for treatment.

    I’m sorry you are facing such a challenge with your son, and I hope his treatment — whatever drugs or therapies are used — will be effective and helpful.

  • Mark, Thanks for sharing your experience. I was recently diagnosed with Epilepsy and given topamax. A few questions since you had such dramatic effects. What was your dosage? As I understand it has to be slowly raised weekly or dramatic effects can occur… in my case, seizures. Why did you increase your fluid intake so much? I have noticed the diuretic effect already and I’m only on 25mg per day so far. I know it’s been a while since you took topamax but there is no other forum to ask these questions! Thanks.

  • Hi, Janet.

    I’m sorry to hear of your diagnosis; that must be very sobering. I’m glad you’re seeking treatment, and I hope Topamax works for you.

    My dosage was very low – 20 mg, I believe. However, I am extremely responsive or sensitive to medication of all kinds, and, as a result, very low dosages often produce profound effects.

    The doctor who prescribed Topamax to me mentioned the need to “ramp up slowly” and increase dosage by 5 or 10 mg per week. He also was the one who stressed the need to increase my intake of liquids to avoid dehydration while on the drug.

    Again, I’m not sure this information will be helpful to you … but I’m happy to share what very little experience I have with the drug. Unlike me, you’re someone with a condition the drug was designed to treat, so I’m sure your experience will be a much better one.

    Mark

  • I take topamax for migraines that sometimes last up to 12 or 15 days at a time. I get a lot of the symptoms from topamax that Mark was talking about plus some. It’s difficult to decide if I should continue with it. Does anyone else get tired trying to figure it all out?

  • I have been taking Topamax for almost a full year now for bi-polar, and although they didn’t know it when it was prescribed to me, cocaine and alcohol addiction.

    Since I really didn’t know who I was, and I was a raging maniac before I felt saved by this drug, and I still do.

    I instantly was able to walk away from addcition cold turkey, my therapist is amazed. I have been tested repeatedly and still have no desire to go back to my old lifestyle and gathered the strength to leave my husband (supplier) by myself with no help from my family who believed that my problems were all a drama that I conncocted for attention.

    Yes, I’ve had many side affects, but I don’t care about them as much as the fact as I can get up every day and go to work and be pleseant and not reactionary, and not be a slave to drug abuse.

    Oh yeah, I was the only cocaine addicted fat person I ever met, so losing 30lbs in a year was a nice benefit too.

    This is just another story to add to this site, which I’m so glad I found.

    Thank you for letting me share my story here Mark.

  • I heard about Topamax and put myself on it, purchasing it over the internet. I am also bipolar (sometimes) and suffer from chemical depression for which I take Wellbutrin and Celexa. I suffered no real ill effects from Topamax, found it actually supplemented my medications in a positive manner. It didn’t damage my libido, that already isn’t so great I’m sorry to say, I lost 1 pounds initially, and can’t do more unless I get my rear in gear and exercise. I did have to give up all carbonated beverages since they taste horrible and since I was hooked on regular Coke this was a plus. Wine and beer don’t taste too great either. My appetite never returned as it was before although I do have the urge to eat more than I did the first two months I took Topamax. I plan to continue to take it through the end of the year and then stop and see what happens – if my appetite returns full force and if I ever get my taste for carbonation back. I hope I don’t – don’t need to.

  • I am presently on 100mg of Topamax daily for Migraines. Have no side effects other than a bit sleepy so I take it before bedtime. Would love to loose weight. For those of you who have had weight loss how many milligrams are you on and how long did it take. It has been a great drug! Not one headache in 2 months!

  • Hey Mark,

    So sorry to hear about such a horrible experience.Topamax has saved my life.I am an ultra rapid cycling bipolar, so regular antidepressant combinations the docs have tried in the past have always made things worse. Seems like Ive tried them all.It wasnt till I broke down and went to a psychiatrist that I finally got the right medication.For me with out Topamax there is uncontrolable crying, rage, euphoria, and a thought process that eats me alive, so to speak, because it never stops,not even to let me sleep. It got to where I could not read well, do math, other than very basic. Please over look any mistakes in this letter, Im not back to normal yet but Im on my way thanks to Topamax.I had to resign from my job because I couldnt do it. I asked my doc why bipolar was kicking in like this, he said my age range had alot to do with it now.Anyway Mark,I need Topamax, 400mg a day to keep me like every one else. Not crying,angry,bouncing off walls, just ME.P.S. my weight stays the same.best wishes kris

  • I was just given an Rx of Topamax this morning by my doctor. Brief background is that I had weight loss surgery almost a year ago and in the last month, deep depression has set in which has increased my interest in food. I have stopped losing weight ahead of my goal and only have a short time left in my “window” of weight loss opportunity.

    My doctor gave me Topamax and is going to work my dosage up to, I believe she said, 400 mg. She said that it will completely kill my appetite, which is exactly what I’m looking for. I do have concern about other side effects but she said they will be negligible in me.

    After reading up a bit, I’m wondering if this is going to work. It’s only for a month or so…

  • Hi Mark,everyone,Topamax has given me a new lease on life. I have been living with this bipolar illness for 30 years. I did pretty well with Lithium until about 7 years ago until I almost had kidney failure and then I was switched to Depakote, which never was as effective.

    Finally I switched doctors because my old shrink was just renewing my script for depakote and wasn’t even seeing me. The new doctor slowly built me up to 100mg of Topamax, from the end of July until a few weeks ago, and I feel like the new Mark S. It has turned my life around.

    I am appropriately passionate about things, I am hungry (I’m normal weight), I just feel plain fine, I work well, I concentrate well. Just hope and pray for me that this continues. I saw the new shrink today and he doesn’t want to see me again for another eight weeks.

    I realize that everyone’s body chemistry is different, but I have responded very well so far, and I owe a lot to Tomapax–so far–we’ll see what the future holds for me. The best of luck for the rest of you and may God bless.

    Mark S.

  • Hi, Mark S. Thanks for stopping by MadeByMark.com.

    I’m glad to hear that Topamax is working well for you. This is a good example of how a drug, when used for its intended purpose, can make a real difference for people.

    I wish you all the best!

    Mark

  • I took Topamax for a little less than a year for bipolar II. It helped with that a lot, and my appetite was less, which was a benefit for me, as I had gained quite a bit of weight due to the depression side of my bipolar. I too noticed that my libido was markedly decreased, something highly unusual for me. I mentioned it to my doctor, and he said that as far as he knew that was not a side effect of the drug. I knew that he was wrong, and figured it was just my body and it’s own idiosynchrasy. The mood stabilizing effect of the Topamax seemed to diminish after a few months, so I was prescribed Wellbutrin as an adjunct. My libido came back, full force, and I felt 100% better. I was more myself than I had been in years, and I was losing weight, which made me a lot less depressed.I think that perhaps when there is a condition that necessitates the use of this drug, that the side effects are not as prominent. Using it solely for weight loss is something that is being researched, but I can see why it would affect someone who didn’t have an underlying neurological problem adversely. Maybe it’s like Vicodin and other pain killers, you only get high from them when you don’t really have pain.

  • I was diagnosed with depression and as bipolar when I was in Middle school, yet not one medication has remotely helped. In fact most of them have made me either gain weight,depressed or manic. When I turned 20, my new doctor introduced me to the drug called Topamax. He explained to me the effects and that if my mind feels “cloudy” or I don’t feel like myself, that I need to let him know. He also explained that my appetite might decrease. He put me on 200 MG of Topamax and 200 MG Welbutrin. Over a course of 12 months my life changed dramatically. The benefits were that I lost 35 pounds, and never looked so good in my life. What happened over that entire year became one big blur. I lost my scholarship because I could not focus in school and my mind was completely scattered and foggy. My social life always came first. I bartended at night and then partied until morning. I did not care about my health or my body, let alone my family or what was really important in my life. I was out of control. I lied to my doctor so I could stay on the meds because I liked life being “sugarcoated.” Everything appeared so perfect on Topamax, that you almost feel numb. My parents couldn’t handle it any more, and forced me to get off the Topamax. Please be careful. Either stay at a low dosage, or make sure a loved one is monitoring you. I am still on Wellbutrin and it seems to be working ok.

  • Thanks to Mark and all of the responders for the wealth of information! I took my first dose of Topamax this afternoon- for Migraines. My doc refused to try it a year ago, but after putting on the pounds with Zoloft (currently 236lbs, 5ft 1inch tall, BMI 45) I begged today- handing him page after page of research from the net. I am very very hopeful about its efficacy for migraines and weight loss. The only thing I’m sure of at this point is, I am sitting here without a snack (unusual) and I do not remember the last time I stepped outside for a cigarette- it had to be more than 4 hours ago (very unusual). Maybe it will help with that, too!! I am also really glad (after reading all of the above) that I am an ice water addict AND I hate pop!! Lucky me! Wish me luck!!!

  • was put on topamax last thursday november 13,2003. 25 mgs per night to work up by 25 a week until i reach 200 per night. i dont think i will need that much. i dont have seizures i have fibromyalgia and lupus pain and neuralgia. if i stop will i have seizures?

  • Hi, Brenda. That’s a great question … but it’s one you should really ask your doctor. If you feel that dosage is unacceptable, you should tell your doctor that, as well.

    Good luck with your treatment! I hope the drug works for you.

  • I have been on Topamax for about 10 days for migraines. At this point I am so thankful. I have had headaches for years and they have just been getting worse. I lost too many days of my life to migraines. I have definitely noticed some changes since starting Topamax. I feel more relaxed and calm. No change in my libido though. Carbonated drinks — forget them! Yuck! And food is boring! Water is the only thing that tastes good but I don’t think I have been drinking enough of it because I have been having some abdominal discomfort for about the last 4-5 days. Could this be due to dehydration?

  • Mark.. I have tried every possible medicine for my migraines; Inderol, Noritriptoline, Imitrex, Depakote. All seemed to work for awhile, and then the affect wore off. My migraines started as hormonal, but seem to be more regular the older I get. I am 44. Sometimes I am in bed a couple of days a week. I have been on Topamax for 3 months. I am up to 100MG 2X a day- have lost 10 pounds, (is this only from appetite loss or is there something else about this drug that makes you lose weight? because I do feel my appetite has come back and I still am losing weight). I probably should not lose any more weight. My headaches are moderately better. I take Fiornal with Codeine on my headache days and am moderately functional most days. But I am concerned about the loss of libido, and the feeling that I am losing the ability to be orgasmic. This has never been a problem and is a real source of frusteration for my husband and I. Has anyone else had this side affect? I have been reading and scouring the web and seen nothing on this. Thanks much for the place to get info.. Dorothy.. PS I have found my memory is short, and I hate that feeling of not being able to remember a word. It happens often.

  • I am taking Topamax 25mg at bedtime for weight loss. Is this enough? Do i need to increase the dose? I have taken it for 2 days and feel no side effects and only moderately decreased appetite (maybe placebo effect)

  • Hi, Dorothy. Thanks for stopping by. I’m glad Topamax is helping some with your migranes.

    Like you, I suffered tremendously decreased libido while on Topamax. In fact, while on the drug, I had no sex drive … at all! For me, that was quite a change. Many people who write to me tell me that they experienced this too — right along with the loss of memory, general fogginess, and inability to recall certain words.

    Only you can decide whether the benefits outweigh the costs! Good luck with your treatment.

  • Hi, Tenille.

    Having taken Topamax for weight loss myself, I strongly recommend against anyone taking the drug for that purpose. Topamax is a powerful drug with powerful side effects. It is not approved for use as a weight-loss drug (and, as eager as the money-hungry drug companies are to develop the next big weight-loss pill, you can rest assured Topamax *would* be approved for that purpose if they thought they could get away with it).

    Only your doctor can answer questions like the ones you’ve posed here. I strongly urge you to discuss your choices with a physician.

    Mark

  • I too am on 100 mg twice a day for migraines have not had one migraine since I started the med. I did not really start losing my appetite until I was on Topomax approx. one month. I really do not have any other side affects, if anything my mood is more stabilized and I have more energy.

  • I started taking Topamax last week for migraines and have noticed a positive effect. However, I can’t stay awake!I sleep after work, get up for dinner, go to bed early, oversleep in the morning. I can’t decide if it’s worth the relief, because I’m a single mom, and still haven’t set up the Christmas tree or sent out cards. I did have some trouble with memory, but it’s gotten better. I’m taking 25 mg per night, and will increase weekly up to 75 mg. I’ve had the decreased appetite, bad taste with Coke, and I really don’t know about libido because it’s not a factor in my life right now. Anyway, just adding some info!

  • First, just have to say this is one of the easiest to read and use weblogs I have seen on the web in a long time. Thank-you! My Mayo doc started me on Topamax in mid-November 2003 for headaches, starting with 25 mg at night, working up to 200mg daily. I have not had any weight loss (normal weight), but have lost appetite. Main problem: really significant cognitive disturbances- short-term memory loss, inability to read anything completely (cannot complete even a magazine article), quick to feel “wronged”, too much “nervous” energy , speaking much faster than normal, unable to sleep, to eat, to concentrate, to pray, to hold two thoughts at the same time …. clearly, the drug is changing some brain chemistry.

    All this is new to me, and I have been perfectly healthy all my life.

    I would really just like to know the consequences of going off Topamax. Will, of course, talk to my dr., but would be interested in some less formal stories … Thanks.

  • I have suffered from Tourettes for more than 30 years (I am 46) and have become addicted to alcohol as a result as it often seems the only way to releive my symptoms on the really “Bad” days. My weight is a little high as a result of the excess calories consumed in alcohol (about 25 lbs over ideal) and lately Ive dropped out of school because of the alcohol affecting my grades. I am afraid to stop drinking for fear I will then have no releif from the Tourettes (and a mild form of OCD)but if I dont stop drinking I will eventually lose everything including my liver function. Does any one have additional information on the effectiveness of Topamax as used for Tourettes? Any replies will be appreciated.

  • I have a few questions about topamax.My doc put me on it for bipolar 3 days ago. I was taking lamictal, but had hair loss and weight gain from it, so he swithed me. when is the best time to take it ? morning or evening? does it keep you up if you take it at night? and also…does it give you gas? I feel like I have some kind of indigestion….any advice please????? Thank You

  • i’ve been on topamax for almost a yr now,i’ve lost over 40 pounds.my headaches have improvevery much.there are other side effects that youall are not even mentioning .you are all just concerned about the weight loss. i’ve had a smallkidney stone and it didn’t feel too good when ipassed it.but you have to remember to drink alotof water.because there is something about it thatcan cause kidney stones.just be sure to read theinfo.don’t learn the hard way as i did.and besureto stay away from yeast contain products and notbut if you eat whole wheat bread,cause you do endup with a yeast infection if not careful.but thisto me is just a small inconveince considering ifyour life is nothing much to begin with except onepill and another one through out the day.and thisone little pill of 100 mg has all but stopped allof the migraines except for a few and you never ever had a headache until you had a car accident.now my life has been given back to me,yes i havenormal crying days,but i consider it to be hormonal but nothing major.and i hope tha everyoneof you out there has great results from topamax like i have. if you are having any really bad sideeffects consult your dr before stopping.it could be that the dosage is not right. you know the world wasn’t made in a day.i was on a lot of this and alot of that before we finally tried this one.

  • Has anyone experienced increased irritability and anger while on Topamax? I cerntainly have and wanted to find out if it could be associated with this drug.

  • Mark, As a medical student and someone who has had the experience of anti-deppressants and other medications, I know about the side effects that you are talking about. However, these side effects are common and temporary with strong medications such as lithium, and it sounds to me like topamax probably affected you like many mood altering medications affect patients. You have to keep in mind that Topamax is a mood altering medication and changes brain chemistry(this is why it is used for epilepsy. I think that if you would have stayed on it for a while longer(1-2months)you would have seen that the side effects level off. Just something to keep in mind….the last thing that people who need this medicine should do is take someone elses reaction and make a determination whether they should take it. Everybodys different when it comes to side effects of medications.

  • I was actually involved in the clinical trials to put it on the market for bipolar disorder. My psychiatrist tried everything.. risperdal made me gain 30 pounds (yikes)in a month, seroquel made me hallucinate, etc… and finally topamax. I am currently taking lithium and topamax 150mg (twice daily) and it has changed my life… I still cycle and spike occasionally, but as a mood stabalizer it has helped complete my therapy. Its taken about 3 months to really help with that effect and I have only lost about 15 lbs (my weight has stabilized). The only bad side effect that I can see is occasional memory-loss, like word-finding. As far possible kidney problems, your doctors should monitor that with a creatine clearance or other tests.

  • I have also heard that Topamax has been used successfully in MS patients. I currently suffer from migraines, neuralgia, spasticity, ataxia. I am currently on 2400mg Neurontin daily, and have suffered weight gain (common side effect from Neurontin), which makes dealing with the MS symptoms much more difficult. I am also having “breakthrough” symptoms, which leads me to believe that the Neurontin is no longer as effective. I am going to ask my neurologist today to see if switching me is an option. I would like to know if anyone else with MS has had any adverse effects??

  • Hi Mark,First I want to thank you, you have summed up exacly what i have been going thru. I was put on topamax for migrains 100 mg a day I’ve been on for 3 month and the migrains have been better but it’s not worth not being me. I have been noone for 3 months and I could just not describe to my husband what was going on I founf your website and told him to read and said this is how I feel every day. I’m working my way off topamax now.Thank you so muchI did lose 10 pounds I would have kept them and myself

  • has anyone experienced hair loss? I have been reading that some women have had that experience. I have only been on 25mg for 2 weeks and will increase to 50mg in a few days. I started topamax for headaches…Great site! good input!shazz

  • Hi Everyone,Interesting site Mark. I stumbled upon it quite by accident, when I was chatting with some of my fibro friends at efibro.com. I was given topamax for my fibromyalgia. Yes, I lost weight. Yes, I experienced side effects. No, I won’t be taking that stuff again. Let’s see – there were headaches, weakness, lethargy, constipation, leg pains, pressure and ringing in my ears, palpitations,chest pains,nausea, heartburn, and a feeling of depression. One or two side effects I can handle, but this was too much. When I called to report this, the nurse at my doctor’s office said that it was not the topamax. About half an hour after that call, I received one from my doctor’s office. Seems that they pulled out the PDR and found all these possible side effects and told me to stop taking it immediately. I miss the weight loss, but nothing else. Fibro itself makes you feel so many things. I couldn’t add more!

  • I have been taking Topamax for one and a half weeks now. I have just started taking 100 mg. I have been very pleased. Only two migraines that were well controlled with Imitrex injections. No weight loss though (drats!). No other side effects either, other than feeling more energy and happier than I have in years. My husband says I am a tad more irritable than usual, but I chalk it up to less passive. I exercise on a daily basis and go about all my regular activities and continue my private practice as a therapist. The only problem I have been having is that my neurologist has requested that I take no other medications until my follow-up (April 7th) and I have been having a good deal of sinus pressure/allergies, but am managing. I have a colleague that has migraines that are absolutely uncontrollable. I wish everyone that has them could have as good a response as I have had on this medicine as I have had.

  • Cara,Check my post above yours. All those symptoms startetd out with a cold,laryngitis and a subsequent sinus infection. I would caution anyone starting to use this drug, but maybe it’s better for migraines.

  • I have been on topamax for 3 years and I feel it has saved my life.I am a bipolar II with many bouts of mania. I agree that it is difficult to deal with the slurred speech and dry mouth as well as the lack of memory. We have to remember, we have a condition that has to be dealt with every day. Consider your severity, how many people have to deal with you on a daily basis? I do not want to take drugs. I am a teacher and it is impossible for me to conduct myself properly and skillfully unless I take 5 drugs a day. Thats the way it is. L

  • Glad to find a site with so many others taking Topamax and sharing their thoughts. I’ve been taking it for a couple of years now for bipolar, I take 200mgs a day. I have had no weight loss although I do think it makes me eat less. I did go through the whole stage of being unable to drink carbonated beverages, but being a Pepsi addict gradually worked back into it. My real problems with it are loss of libido, hair loss, and I don’t regulate my temperature well now, so I get sick if I’m in the sun long. All started after getting on Topamax, but it really helps my bipolar. I just see a family doctor, no therapist, he tried to add Wellbutrin for some anxiety I still have from a car accident a few years ago, but my insurance won’t cover it. It sounds like that drug has helped a few of you. Anyway, I know this is getting really long, I hope someone has a suggestion. Thanks.

  • Thought that after a month of taking Topomax at 100 mg. I would check in with an update. I now seem to be regulated well on it with minimal side effects. This medicine seems to be a life saver for me. I do not know if I have lost any weight. I have not gotten on a scale in some time as I have recently been on vacation and have eaten a lot of rich foods. I take this medicine for migraine headaches, and have not felt better in years. For the first time in 15 years my sleep is regulated, my heart rate appears to be regulated, I only want to eat the food before me (not everyone else’s as well) and my headaches are significantly diminished. As I indicated before, I had initially had some trouble with mild to moderate irritibility. My husband informs me that this appears to have disappeared. I am very thankful to the researchers of this medication.

  • I just started taking Topamax 2 days ago for migraines. I am a little weiry after reading everyones symptoms. My Doctor didn’t tell me anything like them. He just told me I could loose some wait on them, which who would complain about that? Not I!

  • Over the years I have been diagnosed with the following : fybromyalgia, diffuse idiopathic skelatal hyperostosis (Forestier disease), arthrosis,and through a lot of research by yours truly, complex ptsd( believe me, I have very good reasons to have come to this conclusion).

    I recently got to see a psychiatrist in the hopes that he could help with the complex ptsd.First off he made it clear that he wasn’t sure that it was complex ptsd and that it might very well be bi-polar disease. He was in fact very evasive about this.Now I truly believe that the ptsd has a lot to do with the chronique 24-7 pain I have to contend with. I have had on and off bouts of depression over the years but I have never had highs and lows associated with bi-polar.

    Anyway , this expert prescribed Topamax in order to help alleviate the symptoms of ptsdbi-polar , chronic pain and to help me lose weight.

    I have been taking two doses of 25 mg’s per day for about 12 days now and all I have seen as results are as follows: no weight loss , sleepiness, in fact I get up in the morning after a good night’s sleep, I sit in my favorite lazy-boy to check out the news and wake up 3-4 hours later. I feel depressed ,I have short- term memory loss , dry mouth ,diet cola tastes like crap,I drink a lot of water because I don’t want kidney stones , I also sometimes feel confused and I have no appetite for life in general.

    I am at the point where I feel that I should stop taking this medication but on the other hand , since I will shortly be going to a higher dose ,I am wondering if these unnerving side effects might go away at higher doses of Topamax????

    I have found that I could not rely on my family doctor ,nor could I rely on the many experts at the pain clinic that I attended and now it seems that I may be hitting another brick wall with this new one .Geez, I hope I’m wrong .

  • Hello, My daughter is taking wellbutrin for about 3 weeks now, she was on lexapro 1/2 pill 5mg for about 2 months, stopped last week, and for the last 3 days the doctor asked me to put her on topamax 25mg at night, she takes the wellbutrin in the morning. She is having migraine like headaches, diziness, nausea and I think her fibromyalgia is flaring up, by the was she is only 15 years old and was diagnosed with fms 21/2 years ago. Any comments about these 2 medicines together, I want to stop the topamax because of the headaches, extra strenght tylenol is not helping at all. Thank you!

  • I had to switch to Topamax for Bi-Polar II disorder due to the fact that my lithium made me gain 15 pounds in one month. I have no highs or lows either-but with me because of my condition that’s a good thing. This drug is not intended for those who aren’t epileptic, bi-polar or suffer from migraines. Happily, I have already lost 2 of the 15 pounds I gained and I’m hoping to lose more. I’ll keep my fingers crossed.

  • I have been on Topamax for the last 8 months and am up to 75 mg twice a day for migraines. It has been a lifesaver because I hardly ever get them anymore. I was having some memory problems before going on Topamax. My MRI shows that I have lesions on my brain and I was abused as a kid so that may be the root of the problem of my migraines and memory loss. The memory loss has only been going on for the past year, but since being on Topamax, my head feels very cloudy at times and it’s very hard to learn new things and is affecting my job and other areas of my life. I just went through neuropsych testing but have not received results yet. I’m thinking about going off the Topamax to see if my memory gets better. The weight loss has been great…I’ve lost 25 lbs, but I don’t want to lose anymore. I’m in a size 0 so now I am a little bit underweight. I love how Topamax works on migraines, but I just don’t know if the memory loss and confusion is worth it.

  • Topamax apparently affects different people in different ways. I have been on 100 mg for a week for depression and weight loss. It has revolutionized my life, in terms of will power. No problem now to diet, and that’s a gourmet cook speaking. I am now eating a strict, healthy 1200 calorie a day diet (not the trendy Atkins one), and exercising every day, not touching alcohol (a big problem before). Interestingly, if anything, I feel physically much better than normal. I can tell that Topamax is somewhat consciousness-altering, I believe, and I do not think it is something I will stay on permanently, but I intend to stay on it until I lose every single excess pound. It is not debilitating and actually, I quite like the “feel” of it. I wonder whether Mark may in fact may have been on too LOW a dose of Topamax…

  • PS Other main problem I was having was alcohol addiction – not huge drinking problem but like – can’t comfortably go a day without a drink, can’t get to sleep without having a drink, that kind of think. On Topamax I haven’t touched the stuff. I have had one bad night on Topamax, otherwise the sleep thing seems to be going all right, knock on wood. Family history: Bipolar, alcoholics, BIG insomniacs.

  • I am taking Topamax (50 mg before bedtime) for a little over a week and a half now. I take it for bipolar disorder, migraines and to help me sleep. I also take Lamictal (100 mg 2X a day) for bipolar disorder. They both work great for me. Throughout my time, I have tried just about everything…you name it, I’ve tried it. However, no matter what I tried, I at least gave it a chance. What people fail to realize is that some medications don’t take their full effect or “peak” until about a month into taking them (this doesn’t include life-threatening circumstances though). Don’t forget, you may go through or try many different medications until you find the right one for you. Keep in mind that none of them are perfect – they all have side effects in some form or another. If you are looking for a “cure-all” drug, then you are looking in the wrong place. I am sure that some of you will agree with me. I am not an expert by any means, just someone who’s been through the “trial and error” of many medications…and still learning!

  • Does anyone know if it causes liver damage, heart damage or if your are left with any side effects when you go off or how slowly you have to go off if you have been on it for 6 months or so?

  • Thank you everyone for all the information. I am on my second day of 25mg before bed. I am taking it for a few reasons. Sleep (lack of) and weight gain from prozac. Prozac has helped me increase in weight over the last few years. My doctor says this will help me loss it. I feel the s/e already. So far it is just a type of fog. Not bad though. I am not sleeping well. Lots of dreams. I will continue with the topamax. I feel I have to at least give it a chance and my body a chance to adjust.

  • Thank you everyone for all the information. I am on my second day of 25mg before bed. I am taking it for a few reasons. Sleep (lack of) and weight gain from prozac. Prozac has helped me increase in weight over the last few years. My doctor says this will help me loss it. I feel the s/e already. So far it is just a type of fog. Not bad though. I am not sleeping well. Lots of dreams. I will continue with the topamax. I feel I have to at least give it a chance and my body a chance to adjust.

  • I had that fog at first, in a big way (“Dope-a-max”), and it is just about completely gone. I have been on T-max for two weeks now. Main s/e is drinking a lot of water and some pins and needles, but otherwise fine. Still no alcohol. None. Nada. Eating 1300 calories a day, exercising 6 days a week. Like I said before, physically, I think I actually feel better on the T-max (except for the pins and needles I mentioned). Oh, and BP is down to 110 over 80. This is not debilitating. I think people need to give this stuff a chance to work. It is good for people with depression/alcohol issues. It’s working for me.

  • Lisa,My doctor didn’t ramp up the dosage, but rather put me on 100 mg all at once (this may have something to do with the alcohol thing). That pretty well spaced me out the first couple of days. I would say after the first week I was getting used to it. I have been on it now for two full weeks and it is now no longer producing any appreciable cognitive problems (first week I went barreling into the wrong office at work one day – can we say emBARRRRRRRassinng??????). Anyway, now it’s not a prob. The fog has really gone now.

  • I was having some trouble spelling on T-max, too. Seems to be ok now. Hang in there, Lisa. You may need a week or two.

  • I’m on topamax and i’m relatively new to it… just thought i’d let you know that if you need info or support from people, I’ve found that there is a sight on http://www.ezboard.com called the topamax trip that has given me a ton of info and the people there are great at answering questions. If you have questions about s/es, someone there can definately answer it. good luck with the topa!

  • Well, I have been on Topomax for a little over two months now. I have been taking it for migraine headaches and have been writing in periodically to contribute my experiences with the medication. I had not realized until I read some of the above, that the difficulty with spelling and word recall was most likely an effect, ( as well as typing) but that seems to have gone away. Finally, I have lost a little weight!, but I have had to “help” the process along – little breakfast, slim-fast for lunch, exercise, small dinner, no alcohol, no dessert, no snacks during the day – no fun! This regimen has led to a loss of approximately 7 pounds over the two month period.

    I am on a relatively low dose – 100 mg/day – so no side effects, except for the inability to tast carbonation. I can really tell if I miss a dose though. I accidentally missed my morning dose, and within 48 hours I had a relatively severe migraine. Even with Imitrex I had a hard time knocking it out. The medication really works for me. It has made me functional. I never really realized how dependent I was on over the counter medication and how sick it was making me. I was at the point where I was really going to harm myself accidentally because my headaches were so unmanageable, and I was too afraid to try the Inderal prescribed by my family doctor (I have a low heart rate). I have never wanted to be the kind of person that had to take medication on a regular basis, but have had to accept that. P.S. – Does anyone know of any on line support groups for migraine sufferers? Thanks.

    Cara

  • I started taking Topamax in November, also as a weight loss experiment. I’m a Registered Nurse and talked my best friend, a nurse practitioner, into prescribing it for me. I did not ramp up slowly, I started with 200 mg a night and in a week or two increased that to twice a day.

    The initial results were dramatic, I lost 1-2 pounds a week which was my goal but the most dramatic effect was a total loss of craving for alcohol. Prior to the topamax I’d been drinking quite a bit, and that behavior evaporated the very first day. For the first time in my life I was able to have ONE drink and not want any more.

    However, I’ve stopped taking it for a while. I definitely felt foggy and SLOWED down. It certainly took off any manic edge I’d ever had, which was a good thing, but I realized that the manic edge is part of my personality. I went to my acupuncturist who actually cried — she felt that I’d changed so much and lost parts of myself that were valuable. Interesting point for debate — how much of ME is my pathology, and what’s left of me if the pathology is erased?

    I don’t know if I’m going to go back on it. I still have about 50 lbs to lose, and I appreciated the help. I’m drinking excessively again when I drink; and I crave alcohol again. And pasta. All very depressing.

    Since I had not gone on the drug with the advice of a physician, I think I’m going to try to find one who’s familiar with psycho pharmacolgy, alcoholism and bipolar disorder. Obviously I have some manic-depression, since those traits disappeared with the medication. Obviously I have an abnormal response to alcohol as well, which disappeared with the topamax.

    Mark, I understand why you stopped, I did too. But I still look at this as a miracle, life saving drug.

    Bobbie

  • My neurologist has prescribed Topamax for Thalamic Pain Syndrome that I developed after having a brain hemmorage ten years ago. I have tried so many different medications, I can’t even remember them all, none worked. I have only taken the Topamax for 3 days now and decided to look on the internet for info and ran into this site. Does anyone have a problem similar to mine? I also have been taking Paxil for the past 5 years. I have gained about 40 pounds since then. I don’t know if I have gained weight because when you are in constant pain, eating is the only thing that feels good or it is the medication. If there is anyone out there with Thalamic Pain Syndrome, I sure would like to hear from you. Thanks, Sandra

  • I have been on Neurontin for about 2.5 years for diabetic neuropathy and I just discovered that it is the likely cause of my weight gain and also inability to lose. My doc had tried to switch me to Topomax a few months ago but I resisted. I think the idea of kidney stones and brain fog scared me off. I am now trying the Topomax….50 mg daily at bedtime…I am foggy and weird, but it does help the pain a lot. I am going to try to hang with it for a while and see how it goes as there are not really that many options open to people with diabetic neuropathy. Also, weight loss would be a great plus for me 🙂

  • I have been taking Topamax for a year now for migraine prevention. I love the results! No real migraines to speak of in that time. Some small stress headaches, but, that’s life. I take 100 mg a day and have had some weight loss. I did however have a small kidney stone and had no clue that it was Topamax related. I do not drink enough water (but will now after coming across this site). My question is has anyone else experienced facial numbness? I feel “numb” or pressure around my maxillary (either sides of my nose) and at first I attributed it to my sinuses. Now I seriously think it is related to the Topamax. Anyone out there relate??

  • I take topomax for seizures and loved the weight loss but my hair started falling out. The neurologist told me it wasn’t related to the topomax. Anyone else lose their hair?

  • Angela, have you had any hair loss? I was taking 2 prescriptions at the time so I am trying to figure out which one could have this hair loss. I had headaches when I stopped taking the topomax as well and had a hard time with mood swings as my body adjusted to the change.Thx,Carla

  • I’m holding a bottle of topamax in my hand debating whether to start it or not. I have bi-polar disorder, have had it for many years I’m 37. I am on disability have two children and am married. I was on Lamitil and it worked like magic for the first 4 months, I finally started to live and I was so happy, for the first time in my life I felt like a normal mom and person.

    My shrink couldnt just leave it alone and she had to ramp me up to a higher dose (can’t remember how much that was). I crashed and burned with the quickness, I mean I really felt like I was going to die, head pressure, headaches, major confusion, loss of cooridination, slurred speach BIG time and weight gain and severe depression. I called my doc and told her and she reduced my lamitil to half, but it was too late, the medication changed my brain chemistry and I became very sensitive to it even at half the dose. I got off it 4 months ago and have been a misery to be around ever since.I hate my physchiatrist she’s a bitch, but she’s the only one that takes my plan. So here I sit, looking at this little bottle of Topamax, scared to death that it’s going to work great for a few months, and then drop me like a hot rock like all the other meds I’ve taken over the past 10 years. I have had kidney stones in the past, I have a rather large one lodged between my kidney and bladder, my doc doesn not care she says this is the best med for bi polar and weight loss.I’m going to try it but I’m going to break it up into quarters and start out really really slowly, bi polar’s are extrememly drug sensitive I have found this to be true in my own experience and from others. Yes, I will be drinking plenty of distilled water. I feel so alone, I need your prayers, and an internet hug…thanksMare

  • First off I wanted to thank Mark for sharing his experience with others and letting them know that the side affect of weight loss,Is as it says a “Side Affect”.I started taking this drug a year ago for severe migraine headaches that occured about 4-5 days a week.I am eager to say the drug works.My migraines have subsided and are down to about 1 every month or two.Although it has side affects,weighing that with the pain of migraine headache wasn’t even an option.The side affects that I mostly experienced were tingling on the extremeties,mostly my face around my nose.I lost about 45-50lbs in about 8 months which I really didn’t mind.Oh and by the way for some reason my labido is wayyyyyy wayyyy up.But all in all I have to agree with Mark on the fact that this is not a weight loss drug and should not be taken accordingly.The one piece of advise I think everyone should leave this website with is,No matter how much information your doctor gives you on a new medication you should always do your own reserach since you are going to be the one taking the drug afterall.You’ll be amazed at the information a quick 15 minutes search would get you.

  • I have been on Topamax 100 mg for aabout a month now. My doctor prescribed it for migraines, but I believe it has helped with my major mood swing more than headaches. I have lost 13 lbs in the last month, but don’t have much energy. Am wondering if I might be BPD or bipolar because of the calming of the moods. Feel some depression tho, too. And am wondering if you can mix anidepressants with topamax. Any thoughts?

  • My story (the very short version) …………On Topamax since 12/2003 (for migraine prevention) . Up to 100mg per day. It has worked well for the migraine issue. I started a diet.In early March of 2004 I wanted to lose 8 pds. I ended up starting having diarrhea and unable to get it under control. I have lost over 25 pds in less than 3 months and have other side afftect too.I have gone through a colonoscopy to ensure no other problems.What is scarry is how what other Drs do not know.Have much more to say but, have to go for now.s

  • I must say after reading all this stuff, I am a little nervous.I have a script for topamax 25mg.I am also on lexapro and wellbutrin. I suffer from depression and ptsd, also drug addiction and bulemia.I have been off of dope almost 3 yrs.and since I have sober I have put on an incredible amount of weight, also I had a baby. So I am excited about the weight loss. Also I have a horrible memory anyway because of drug use. I can’t imagine it getting any worse. Never say never. Anyway thanks for this site Mark, and also to the lady who posted the ezboard.com. I will have to check itout. I will check back in next week to let yous know.

  • Hi, I have been taking topamax 400mg for over a year now. Most of the time I feel great, but every now and then I notice the fog that is eternally present in my mind, the fact that I have often have difficulty remembering words or people’s names, forget what I was going to say in a conversation, or generally feeling like the village idiot. I also often feel fatigued, have sore joints and muscle pains, sleepy, de-hydrated, soda tastes flat, and have not experienced any weight loss. In fact I have gained weight since I have been on topamax. But I also remember how the depression and mania that I experienced before being on the medication and feel that the so far the side effects are not as bad as the deepest depressions I felt. There is also an increased chance of kidney stones for those on topamax, this is another reason doctors tell there patients to drink plenty of water. Also there are several side effects related to the eyes.

  • I was on topamax for 6 yrs. to help my bi-polar it worked very well for myself. My 10 yr. old daughter is on it also for the same reason and has had wonderful results. One side effect we both have above 100mg are the stiff joints and decreased strength in our hands.

  • This is for Mare, I had to switch from topamax to zonegran after my third child. For what ever reason the topamax didn’t work anymore. Zonegran is a mood stabalizer like topamax just a little bit stronger and I didn’t have any of the side effects I did on topamax. I love it. I’m also on welbutrin xl in the morning. I have also discovered in the 15 yrs of having bi-polar I am by best advocate and I go to all my appointments with documentation as to why I want to be on a certain drug. The internet has been a great resource. I usually don’t take no for an answer for myself or my children.

  • Don’t panic but the drug pamplet states that Topamax can reduce the effectiveness of oral contraceptives. That and too much weight loss can cause “loss of menses”!

  • I started taking topamax 25mg this week for fibromyalgia, shingles and carpel tunnel syndrome pain as well as migranes. I am working my way up to 100mg nightly. There is already a fog that is over me from being on Neurontin 300mg. I’m on 1800mg of Neurontin daily for pain and am being weaned off and over to the topamax, lipaderm patches and ultracet. I have difficulty remembering how much medicine I took and what my name is. I am willing to try anything to rid my body of this pain. If that means getting spaced out, skinny and living by a water cooler, I’ll do it as long as I have to. I will say however, I Have Become Comfortablly Numb! Thanks to all of you, especially Mark… may all your fantasys come true!

    Deborah Rose whose not so rosie right now

  • I have been on topamax for 4+ years for seizures and have been seizure free for going on 4 years. So for me the drug has worked so far. I have side affects. The confusion and lost of words but we have been blaming that on the fact that I’m a blonde until I came to this website and now everything makes sense. When I first got on this drug my doctor told me is was relatively new and the only known side affect at that time was weight loss. I did lose some wieght but I’m stable now around 120. I took this drug while I was pregnant and haven’t had any problems (knock on wood) with me or the baby. I was on Tegretol with my 5 year old and no problems with him either (again knock on wood) just in case any moms to be were wondering. Lately though I have been feeling numbness in my hands and hair loss which is why I started researching this. I got an appointment with my doctor this friday to see if I can either lower my dosage or get on another medicine. I’m only on 25mg morning and night. But if I stop taking it all together I know I’ll have another seizure as with all the medicines I have taken in the past. I’ll be siezure free for a year and the doctors will think their gone and take me off and Boom, I’ll have an episode. I hope this is useful to someone.

  • Hi, I’ve been on topamax for 4 weeks now for bi-polar, I found this site before going on it and its been really useful to read everyones experiences so far. Normal anti-depresants have long term neg. effects on me, which is apparently understandably now I’ve been correctly diagnosed, but after having gained 6 stone in weight from those meds. I refused to go on any mood stabilizers that stated wieght gain as a side effect, did some research and asked for topamax, so I am hoping I’ve done the right thing. I’m usually very sensetive to drugs, so I’m on 3 15mg tabs a day, being very gradually increased and monitored weekly. Its having some positive effects, I’m more active and more rational thinking, a little more positive than usual, I’m still rather over emotional so I don’t think the dosage is quite right yet, but I’m glad they’re being cautious. I’m dyslexic and have always had problems remembering words and particularly peoples names, this did get a lot worse to start off with, and I couldn’t do simple maths for a few days, but thats worn off, just back to my usual level! I also get a little occassional numbness in one leg, like I’m about to get pins and needles, which happens a couple of times a day when sitting, plus my body thermostat doesn’t seem to work very well when its sunny, I get hot flushes like I’ve got the menopause(it does warn about it in the leaflet though, its just not always ok to stop and sit in the shade with a drink if your out and about!)More good things, I’ve lost 10lbs, I’ve no inclination to overeat anything out of boredome or just because its nice, a bit is enough, plus no migraines, though if I’m late with a pill a tension headach quickly kicks in. My period was a week late, although the pains were there on time, which was a bit bizzare, but its here now (yippee-NOT!), wonder if that will change? Plus, coke makes me feel sick, I just drink water now, my face gets hot & sweaty, but feels great! Good Luck to you all and Many Thanks to Mark for this site, I’ll keep coming back regularly and will post if theres any changes that may be of interest,Best Wishes, Penny

  • I’ve been on Topamax now since Feb. and have lost approx. 28 + lbs. No side effects since the first few weeks and those were the numbness of extremeties and the foul taste to regular sodas, this was a good thing as I was totally addicted to Pepsi!! Now I’m at 100 mg dose at bedtime and am doing great. My physician tracks my blood levels every 2-3 weeks to check for acidosis which can signal several things from liver problems to kidney stones. I think as long as your physician stays on top of things and there is open communication this is a fine drug for weight loss. I’m in the medical field and after doing much research it is a much better choice than the medications currently approved and on the market for such like Meredia and Xenical which have MANY more side effects and can cause a 20% weight GAIN on top of what you lost once off of the medication. I’m sorry that so many of you have had negative effects from it. I hope to remain on it until I reach my target goal weight, approx. 20 more lbs. and then will wean off. Happy and healthy!!

    MereMere

  • I’ve been on Top. for about 3 weeks now for migrains. Only had 2 since going on so that may be a good sign. Haven’t wanted any wine at all and that’s really odd for me. I do like that. I was really looking forward to the weight loss and so far, nothing. Not a pound. I started out on 25 mg x 2 a day and am now up to 75 mg x 2 a day. I think I wanted the weight loss as much as I wanted my migrains to go away but it’s early in the game still. I still have my fingers crossed.

  • I have been taking Topamax since the end of March for Bulemia. The first day my doctor perscribed it to me I quit taking laxatives and have never taken them again. I had been taking them for five years so this is a great thing that the Topamax gave me the incentive to quit. I haven’t lost much weight but I haven’t gained weight either. I take 25mg and haven’t had many side effects except for grogginess. I just keep going and exercise too. I guess overall I am happy about the pill but I wish I were taking MORE milligrams.

  • I started topamax last week at 25 mg for migraine prevention. I have anxiety over the side effects of kidney stones and hair/memory loss. I will post my progress.maggie

  • I was on Topamax for a 1 1/2yrs for chronic migraines. It never took my migraines away, but it lessoned the intensity of them and stopped my morning waking up migraine. However I had many side effects, tremors, eye problems,speech difficulties, I would think one thing and say another ( same with writing), anxiety, couldn’t concentrate, and worst of all I was the sweetest person before topamax, then I turned into this angry monster. Finally I couldn’t deal not being me, so I just went off of it, and the wierd thing is, I’m in more pain than before I went on it.

  • I started Topamax in July for weight loss, but I only lasted three weeks on it. I started with 25 mg at night, and increased the dosage each week by 25 mg. The side effects I experienced were diarrhea, pins and needles, mild headaches, weird pain in my forehead (I thought I was constantly furrowing my brow, but I wasn’t), and heartburn, but I was also calm, focused, very happy, and not fixated on food – a first for me. I lost perhaps two pounds.

    On the third week, I increased to 75 mg, and the side effects were magnified. I chalk it up to depleted electrolytes – drinking a banana smoothie gave me a horrible stomachache, which I think was due to overloading my depleted system with potassium – even though I drank water like a fish. The pins and needles intensified, and the diarrhea was out of control. I already have irritable bowel syndrome and am prone to diarrhea, so Topamax made me miserable.

    After one day on 75 mg, I called my therapist, who advised me to drop to 25 mg and see if I felt better. I didn’t. So two days later, I stopped completely.

    I have an appointment with my primary care doctor in a couple of weeks, and will probably give Topamax another try. I plan to start a few days before the appointment, so I can explain the side effects to my doc and see if I need a potassium supplement.

    Has anyone been prescribed a potassium supplement while on Topamax? I’ve read that you may need one, but haven’t heard any first-person stories.

    Perhaps I increased the dosage too quickly; perhaps it interacted with the Claritin or Clarinex I was taking; perhaps I was seriously low on electrolytes; or perhaps I just can’t take the drug, period. At any rate, I’m not quite ready to give up on Topamax completely.

    p.s. – I was talking Wellbutrin XL 150 mg during this time, on top of the Topamax, allergy pill, and birth control pill (despite Topamax interfering with their effects).

  • i know how erin feels, i started taking topamax in April. Thought i had found my miracle drugs for the migraines i have had for 27 years, only had 4 in the first 2 months, but then started having more and more. Worked my way up to the max. recommended dosage but too many side effect, vision, speech, concentration problems, and lots of leg cramps. Just have to make myself do things, forcing myself to go and still having around 15 migraines a month. I am now weaning myself off of the drug, 10 more days to go. Looking forward to drinking that coca-cola. Guess i will just have to live on triptans drugs and keep on looking on that cure. Hoping menopause will help. Really glad for the people it does help, i know for those first 2 months it really did change my life just don’t know what happened after that, while i had the tingling in my hands it seemed to work but when that went away so the effectiveness, worked up to 200mg a day.

  • i just started on 25mg topamax at night in addition to 200mg neurontin BID for essential tremor. topamax was added to help with the head tremor and weight loss (which the neurontin adds). I’ve noticed that my hand eye coordination is off in my racquetball game. my dosage increases to 50mg next week. i’m hoping that in a month my body will have adjusted to the drug. i haven’t noticed an appetite change or any other side effects. if i lose any hair i hope its only the grey ones! good site mark!

  • Hello again, back with a progress update. I’m now on 4 15mg topamax per day, which went up by the 1 extra tab 10 days ago. I had stopped taking another anti depressant right at the start of this, my doc. said it would take 6 weeks to clear out of my system, so now its the pure topamax effect only. Since the start of the tablets in July I’ve lost 18lbs and haven’t had a migraine headache, although I’ve experienced some other type where my brain feels like its being squeezed, but not painfully! sort of stressy ones or is it what happens instead of a migraine, do any other migraine sufferers get this type of headache now? My depressions not so good though, I also have to make sure I space the tabs very evenly, if I go about 2 hours over when I should have one I feel quite physically tense and stressed. I can have a really good laugh at things sometimes, but I also seem to be able to hit some extra lows too, then I’m not really sure what I am in between. I’m getting very vivid dreams, so I avoid having a late tab. as they make my heart rate increase noticable for an hour after taking one, the doc. says thats why I’m losing the weight ‘cos its increasing my motabalism, I had sleep problems prior to the tabs anyway so have MORE tabs for that. Still, at least all cravings have stopped, ‘monthlys’ are still being weird (doc says thats ok on topamax) but I’m just feeling a bit odd, slightly detached from myself, personality wise, at times, which I hope goes. By the way, my brains working again, I can do maths and stuff, it was almost normal until they upped my dosage and it went a bit again, but at least I know it comes back. Haven’t had any hair problems apart from it going rather dry and dull, having to put a lot of products like serum to make it look healthy. Also saving a fortune on fizzy drinks, only drink water now!Good Luck and Best Wishes To All,Penny Uk

  • Has anyone experienced brochitis, larygitis and sinus infection while on Topamax. It could be a coincidence since I’m prone to allergies anyway, but it seems like each time I increased my dosage I suffered more intense symptoms. My doctor does not think the Topamax is the cause, but I am concerned because I am a professional singer and my singing voice is altered. I was on 50 mg. 2x a day, but have now weaned myself down to 25 mg/day. Other than the upper respiratory symptoms I have done great on Topamax. It completely knocked my migraines plus relieved neck and shoulder pain I experienced as a result of nerve damage from a ruptured cervical disc. I really hate to go off the stuff if I don’t have to as the migraines have already come back with a vengeance!!

  • Mary – I’m not sure if I have bronchitis, laryngitis, or a sinus infection, but since I’ve started Topamax, I’ve had this weird productive cough and increased post-nasal drip. Thank goodness a trip to my doc is scheduled in the near future. Thanks for posting, though, because I’ve been wondering if my upper respiratory symptoms had to do with the meds, or if they were caused by allergies or a cold that never fully developed. I’ll report back. (I’ve started back on Topamax, increased to 50 mg at night, but have backed off to 25mg at night because of gastrointestinal side effects)

  • Briefly: I am a retired psychiatrist whose wife with a loong history of bipolar disorder,paranoia, depression and anorexia nervosa was placed on Topamax, along with the Risperdal, Lithium and Wellbutrin she had bee taking. She absolutely refuses to to meds that may cause weight gain because of her obsessions and misperceptions that go with the eating disorder. In the past many meds and combinations etc., have been used on her but she is also an alcoholic/addict to a severe degree. In recent years the doctors had introduced her to Xanax and Ultram and now she has new addictions. I tried to warn them that Wellbutrin can cause seizures and appetite suppression, but they refused too listen. she was delighted by the appetite suppression and the finding that it may help women quit smoking-which she really needed badly. I did not notice much improvement in anything, except that her anxiety was greater and she sought more and more Xanax and similar drugs. She did reduce the amount of her smoking. Too me she looked gaunt and older, but could not see this herself, finally she had one of her many short stays in the hospital for suicidal ideation, I believe. I forget the exact time frame, but this was a number of months ago. the doctor on duty was filling in for her usual doctors and suggested Topamax for her mood disorder. My wife was delighted to hear that it could cause weight loss or surely would not cause gain. I never thought it helped her at all. Her anorectic obsessions and delusions about body size and appearance grew more intense. She actually grew more anxious and depressed and was seeking more and more of such drugs as Xanax and pain killers. From a once beautiful woman she turned into a boney 60 or more appearance when she is only 47. Her paranoid delusions of persecution and plots of death by the medical community etc., worsened. A few weeks ago a startling thing happedned that made me finally start checking on Topamax from the experiences of others-she abruptly totally stopped smoking and never started bacck, saying it ws the easiest thing she ever did. This is strange, since her mental and phsyical condition were worsening. For months she told me of periods of memory loss, finding her things rearranged and thinking people were coming in at night. She could not remember the next day what she had done the day before. She mentioned out- of-body experiences which she never had before. ther is much more, but finally she was hospitalized and fianlly taken off the Wellbutrin and Topamax and is now regaining weight, but I fear there is permanent neurological damage to her memory and because of the recent raped deterioration in certain visual problems she has. she is under thirty day commitment for. I believe that we must have drugs in medicine, but now lean for my own need to alternative therapies, especially homeopathy. M.D.’s must stick to what they swore “first do no harm’ and always realize that “one man’s meat is another man’s poison”. I think my wife is a victim of malpractice and would like to find a lawyer to consult. Personally, I feel Topamax, if taken long enough and high enough dosage can be a dangerous drug for many, if not all who may take it, and-like Thalidomide- must be tightly regulated. Sincerely, E. A. Fountain

  • I have been taking Topamax for a few months for migraines. The side effects, which were mild, went away after the first few weeks. The benefits far outweigh the risks in my case. I was suffering from daily migraines. Topamax was the only thing that I tried that worked to bring about any amount of pain relief. Maybe if the drug is taken for the right reasons (i.e. seizures, migraines) it is more beneficial. Also, weight loss is not always a side effect of this drug. I have not experienced any weight loss as a result of taking Topamax. I wouldn’t mind losing weight, but seeing as how that is not the reason I am taking this medication, I am not going to complain.

  • I am taking Topamax for depression and was thrilled to hear the side effects about the weight loss since I have gained 25 lbs from all the SSRI’s the DRs have tried me on over the years. I started Topamax about a month ago, first with 25mg and have worked up to 100mg and next week will go to 200mg. I take it at night. I sleep wonderful. The only side effects I have had were nausea (which went away) and some tingling in my hands in feet. For all of you that have lost weight…when did it begin? Also..I have not had a migraine since I started Topamax..I am hopeful that I can throw my Imitrex away! When should I expect weight loss?

  • Hi, back for a look to see how everyones doing and to let you know about a few things that have changed. I was interested to see the post from Mary on Sept.7th, don’t know if this is a coincidence, but I was occasionally having to use a blue asthma inhaler before going on topamax, I have gradually developed a chesty cough and last week was prescribed asthma meds to be taken twice daily at double the dosage that I’ve ever had at any time in my life…I didn’t link it at all, but has anyone else got asthma thats worsened on it? It may be some other reason, but it is a little strange.Anyway, my sweats and tremors have all gone, the weight loss has slowed right down but I still don’t want to over-eat and although I still get to feel quite angry and anxious sometimes its getting less, and I’m getting to laugh until I’m literally in tears, which I haven’t done for years, so I’m hoping that I’m just going to settle in to the tablets even more. I really hope that Meghan who posted just above me reads this,I’m glad to say I haven’t thought of suicide for some time now, which I used to a lot, but I’m much more cautiously optimistic now, it helps that for some reason its stopped me ‘imploding’ and I have the anger release, as well as it somehow taking away the need to over-eat, which was a kind of self-harm, not the same as yours, but I hope it will work for you the same way. I’ll be hoping for you, and best wishes to all on here too,Penny Uk

  • Hi there everyone, just checking in..it’s been awhile since I have posted (April 21). Still on the same dosage of the “Max” and am still taking the same dosage of the lamictal. Good news though. I have stopped drinking sodas(okay, I cheat every once in awhile) and almost always drink water now…which is something I thought would never happen to me. I am still losing weight (although that is not what I was put on this for, I was put on it to help me sleep and to help w-migraines and bipolar). I just wanted to say that my heart goes out to those who are having the bad reactions to the topamax. Unfortunately, topamax is not for everyone – that goes for any drug. I wish those people the best of luck in their search to find the right prescription to help with their problem.

  • I’ve been on Topamax for about a month now for recurrent migraines. I’ve tried other medications – preventative or otherwise – that simply compare to shooting a BB gun at a raging Godzilla. Topamax, on the other hand, seems to be gaining some headway, with some quirks, of course.

    Anywho, I’ve actually just spoken with my neurologist. I did, however, forget to ask him about a couple of lingering side effects that concern me. I’m a college student/paralegal dealing with these migraines, so either I take the Topamax and deal with the mental road blocks as far as cognitive thinking and reasoning go, or don’t take the Topamax and miss class/work two days a week trying to deal with the pain… damned if I do/damned if I don’t routine. Does anyone else experience this problem? Is there typically a dosage that will still work effectively to treat migraines, but not kill me intellectually?

    And secondly, what’s with the anger? Gradually over the past couple of weeks, I’ve been getting the urge to put my fist through a wall, and I’m not normally such an angry person. Am I correct in attributing this to a side effect of the medication?

    Thanks for any feedback, folks… Kinda grabbing at thin air here. Have a good weekend.

    Lisa

  • hello folks, sounds like there are still positive as well as negative experiences with topamax. i’ve found that with 25 in the morning and 25 at night that my more obsessive nature has relaxed. i was fairly sick to my stomach for a few days but i’ve figured out how/when/what to eat which may be that weight loss thing. i cant say there is great improvement with my tremors but since i’m less driven i’m thinking that the link between perfection, drive, anxiety and tremors is tempered by the drug. sort of a long work around. its kind of fun being more easy going! so lisa i’m surprised at your anger…perhaps topamax is a disinhibitor for you…

  • been on 300mg for 3 years for migrane sizures have no memory sometimes forget to eat but don’t lose weight because family members remind me. was in bad automobile accident. lots of things went wronge take 11 different kinds of meds. seeing new head doctor in november and your screen will help because im numb with no feelings anymore and im starting to get angry maybe i need higher dosage or new drug. my left side has gone heavy and i can’t lay on it without pain in my bones and muscels. and im getting tremors on the left side only.

  • I am about to try Topamax for bi-polar disorder, alcohol issues and weight gain. I was on Paxil then Lexapro (which caused a weight gain of 100 lbs in 18 months). I am starting at 25mg for a week, then 50mg for a week leveling off at 100mg in the third week.Some of the issues addressed here scare the hell out of me! However, given the medication I have taken in the past, what could be worse?I’ll check in as time goes on.Amy

  • My 21 year old daughter has been on topamax for seizures for several years. She also takes lamictal. Her neurologist want to increase her dosage of topamax from 400mg. daily to 450mg daily. The PDR states that dosages above 400mg. daily are not more effective than lower dosages. Anyone out there on a higher then recommended dose?

  • I’ve been taking tmax 250 mgm in a divided dose for about two years, sorry, no weight loss here, i’m taking it for mood disorder, and i’ve never noticed any negative side effects, but i would love to lose the weight those nasty SSRI’s made me gain! I’m also taking effexor and seroquel. My doctor just increased my dose of tmax to 300 mgm a day, lots of stress in my life right now, but i have noticed that i’m very thirsty and have been having crying fits, but i don’t know if that’s the drug or my situation. My doctor has told me that I should never just stop taking topamax, this drug has to be weaned out of your system–whether you’re taking it for seizures or not, stopping it cold turkey can make you have seizures! So, PLEASE don’t just stop! And by the way, this is a great site, everyone sharing so much information-way to go!!!!!

  • I first started taked Topamax due to rapid weight gain that resulted from three surgeries six months before I began taking the drug. I am 20 years old, and the last surgery I had was in 4-04. I went from 150 to 190 in six months. So my doctor prescibed me to Topamax. I also take Welbutrin XL to help with depression and Trazadone to help with anxiety and to help me sleep. I was also originally on Celexa which was believed to have helped me gain the weight. I started out at 25 mg, and moved up each week. They told me to take the pills at night b/c they make you sleepy, but I found myself waking up, so now I take half my dose in the morning and half at night, which does not bother me. The side affects are definitly there though. I do have a decreased sex drive, notice I say decreased, so it is still there. But I take the two other medications, so it is hard to tell where the side affects come from. One very harsh side affect that I have not heard from anyone before is severe joint pain. I have been to Orthopedic doctors who have no clue what is wrong with me. My knees are swollen. I had tests done for everything, arthritis, lyme disease, everything. I looked up the side effects of Topamax, and it said it can cause joint pain. I started having this problem when my doctor raised my dosage up to 400mg a day. Not but three days later did both of my knees swell up, making it impossible for me to walk. As I got used to the dosage (I believe) the problem has gotten better. But I do believe that it was caused by Topamax. I will say that I now weigh in at 168 pounds. So I have lost 22 pounds in three months. If you asked me if it was worth it, I wouldn’t no what to say.

  • I love this site. I thought I was the only one! I take Topamax for severe Migraine and tension headaches. I was on Topamax (100 mg) before now for a couple of months while on depo-provera (birth control) and couldn’t handle the side effects, so I went off. But it really is the only drug that helps w/ my headaches. So I got my husband snipped, got off the depo, and went back on. Worked my way slowly back up to 100mg. I’m there now for 3 weeks, and not sure how to react to the side effects. No migraines, just tension headaches once in a while. My biggest problems are the dry mouth, no matter how much water I drink, weight loss (almost down to a size 2), and the doozy, no loss of libido, but HUGE loss of the ability to have an ORGASM. I am an extremely sexual woman. 30 and in my prime! Ready to jump out a window I’m so frustrated. I don’t know if this will go away like most of the other effects, Or should I lower my dosage? My doc says he never heard of this reaction before. I don’t want to go off of Topamax again. I can’t live with those Migraines. I have 3 beautiful girls, one w/cancer who needs my full attention. Priorities, priorities. BUT..COME…ON… !! Could it be the zoloft? (150mg) for 4 years? maybe that needs to be changed? Any suggestions would be greatly appreciated, Firenjen1@msn.com. My vibrator is running out of batteries. (ha ha) I’m going to hit the health food store today, since I can’t talk to my doc till Monday. DRY DRY DRY is unacceptable!!!! The rest I can live with….

  • Since my last post in August, I started Topamax again, first at 25 mg then increasing to 50 mg. My goal is only to lose weight, but I’ve found that I haven’t had one headache while on the drug (hurray!). Unfortunately, at 50 mg, I found myself in a very depressing situation and was entertaining suicidal fantasies – a huge problem for me, as I’m already on Wellbutrin XR for chronic depression. Whether it’s the medication or just life exacerbating my depression, I’m not sure. Other negative effects experienced this time around: cramping in my hands, back pain, loss of libido. I’ve scaled back to 25 mg and am awaiting an appointment with my therapist to determine whether it’s worth staying on the drug. I’m carefully watching what I eat, drinking 10 glasses of water a day, working out and lifting weights, and have lost very little weight (1.5 pounds).

  • In defense of Topamax…I want & need to add the following to what I wrote the other evening, I wasn’t able to at the time, I didn’t want to be late to babysit my grandson.

    My husband is a psychiatrist, and, I too, did my time in the clinical & hospital setting before I retired. Combined time between us is about 47-50 years practice and research.

    Topamax currently is only approved for use as an AED, and to prevent migraines. Not for depression or weight loss. While some studies have shown Topamax to have some mood stabilizing qualities & helpful for obsessive compulsive disorders, that’s different than having FDA approval.

    I truly believe it unfair to blame Topamax for all kinds of side effects, if it [Topamax] is not the only chemical/drug in your (or, to the psychiatrist, your wife’s) body. This includes SEEMINGLY innocuous ones such as caffeine, cigarettes, even OTC allergy medication, asthema meds, marijuana (come-on, WE KNOW that 65-70% of the population likes the green bud!), add these to the more serious chems such as: alcohol, amphetamines, cocaine, benzodiazepines, pain killers, SSRI’s, ETC, ETC. How many of the above does or did your M.D. know about when you started taking the Topamax? Were you honest about the amount of JDaniels? About the Daily DUB or eigth?We’ve found that SOOOO many individuals don’t tell their Docs about the recreational fun stuff they’ve been smoking, swallowing, sniffing, shooting, and others forget or don’t consider them or the OTC health aids to be important enough to include on the health history.

    The more chemical compounds (drugs) one has floating around in their brains/body, the likelihood increases that side effects for 1 or all chems will occur!Notice those RED labels on your pill bottles, about not mixing them with alcohol? Did you ever? What Happened? Ever been party-ing (as a teenager certainly), drinking alot, accompany the alcohol with some serious bong rips, entire splif or blunt??? (please, this granny’s been to Amsterdam x 5) Did you pass out? Hmmmm, could that have been SIDE EFFECTS? Damn SKIPPY!Smoke the skunk without draining the bottle of JD, you could probably hack up a lung coughing, wasting most of that ozer of White Widow, but not pass out. Which chemical are you going to blame for the Loss of Conciousness (LOC) though?

    The Testing of medication is extremely controlled; for example, Topamax will be the only drug given to the mice (or people), unless they are testing Topamax as an adjunct to 1 other medication. This is how, scientifically, information is obtained about a drugs efficacy & side effects.A REAL side effect is when the people (the mice too but it’s limited, they keep chewing the pencils up) rate a given problem significantly higher than the control group did on the placebo. The mind is powerful, and can create situational problems in the body by suggestion alone (that’s how the ‘placebo people’ end up with “side effects”).

    The field of medicine is complicated, and the brain is even more complicated than the field of medicine. What happens when you bathe the brain in so many chemicals? Good question huh?!You want to talk about side effects? Do you know all of the side effects for your benzodiazepines, pain killers, SSRI’s, ECT, sleep meds? What about your Marijuana, alcohol, amphetamines, cocaine, and any of the other chems you smoke, swallow, sniff, or shoot? Lamictal has a fatal (or at least disfiguring) rash that Glaxo-Wellcome warns physicians & patients about in CAPITAL BOLD FACE TYPE! One of my friends has it. NO amount of money can compensate her for the constant misery & permanent extensive scars on her arms & legs.And why is it that side effects are tolerated if it’s the recreational “fun stuff”? Ohhhh, yeahhhh, falling over & getting dehydrated on E was a BLAST! Prefer shrooming myself, hey man, if I gotta be puking…Chances are most of the symptoms you blame on Topamax (sexual dysfunction, moodyness & rage for starters) are being caused by the benzodiazepines, pain killers, SSRI’s, & sleep meds!

    Have your shrinks or PCP’s explained to you the WITHDRAWAL symptoms (there ARE serious and sometimes PERMANENT after effects) of benzodiazepines, pain killers, SSRI’s, sleep meds? Do YOU know the WITHDRAWAL symptoms of your Marijuana, alcohol, amphetamines, cocaine, etc.? If Topamax is helping you “get off” of a chemical you’ve been on for YEARS, how do you know that what you are feeling isn’t THAT WITHDRAWAL?For educational purposes, I recommend 2 books “Your Drug May Be Your Problem” by Peter Breggin M.D. & David Cohen Ph.D. and “Toxic Psychiatry” also by Peter Breggin M.D.

    Whew, this soap box is making me dizzy, must be a side effect of the fumes & being up here too long, I’m comin’ down now…;)As patients, you ALL have a responsibility to educate yourselves. The PDR is online, read carefully, AND remember, just because it’s an M.D. throwing a drug at you, No ONE can make you take any med YOU don’t want to take! ONLY you know your BODY. Read & Research everything before consuming, you are the FINAL GUINEA PIG!Live well & PROSPER!Rebecca

  • I have been on Topamax since January 2002 for a seizure caused from a car accident and I thought I didn’t have any real side effects except from the minor memory problems and concentration problems but it was nothing to be alarmed about. Then, I my hair started falling out and it has just gotten worse. I went back to my doctor and was put on Keppra but it just gave me headaches, so I went back on the Topamax, but the hair loss has continued, so I think I will give Keppra another try because I can’t handle the hair loss anymore. I just want to know if the hair will grow back once I get off the Topamax. Plus I never sleep good at night. No one else mentioned that. I guess I am the only one that doesn’t sleep well.

  • This drug has a large sulpha atom in it’s structure. That would make it a sulpha drup which may not be well tolerated and cause problems, sometimes severe, in those people sensitive to sulpha’s. Actually, sulpha sensitivity is common.

  • I saw my psychiatrist today for my quaarterly meds renewal. I take 75 mg of effexor and a low dosage of klonopin for depression and anxiety. However, over the last few months I have noticed my depression deepening and I have begin to binge on food (mostly carbs) She is putting me topamax for the bingeing and seeing me again in a month to evaluate the results. She’s also increasing my effexor dosage for the depression. I haven’t gotten the topamax filled yet and, frankly, a lot of things I’ve read on the web and in blogs scare me. I know I will likely be on effexor all my life…One – because it really does work on the depression and Two – once you’re on it the discontinuation effects are so horrible, you stay on it. I guess I will never be drug-free again and that kind of bothers me. But I’d rather be medicated than live with depression again. Didn’t mean to ramble on. I hope I have a good experience with the topamax. Thanks.

  • HI,

    I thought I was crazy. I was prescribed Topamax for nerve pain associated with a back injury and it made my head feel so foggy. DR said they never heard of that complaint but told me to stop taking it. Tried it again when injury flared up and still same foggy head.

  • Started taking Topamax 3 weeks ago for ultra rapid cycling bipolar disorder. Began with 100Mg at night the first week. Noticed during that week that late afternoon I started to go down so I told my shrink.She then told me to increase the dose to 100mg morning and night. That’s when the nightmare began. I was a shell of myself. The whole left side of my brain must have decided to go on vacation. I couldn’t think straight ,disoriented, couldn’t concentrate, balance was off, easily distracted, math and spelling skills gone, couldn’t even find my own parking spot in my parking lot at home! I began to lose my appetite, get diarrhea, begin to lose my hair, suffer from sinus headaches, feel weepy—let’s just say–not myself :)I discussed this with my DR. and she immediately decided to take me off the drug and put me on anti -psychotic drugs. A little history here: I have been on every anti- depressant out there. Either they don’t work or they cause me to seriously plan the BIG ONE so I cannot take them. I cannot take the other mood stabilizers so it’s either Topamax OR the anti psychotic drugs. I’ve read up on those and if you think Topamax is frightening…..Plus they warn if you have a family history of hesart disease not to take them and I come from a family with a history of heart disease. You as the patient are your best advocate! ANYWAY: I decided to stay with the Topamax. I changed the dosage myself. I still take 100 mg at night but lowered the morning disage to 50 mg. WHAT A DIFFERENCE! I feel like a whole person again! I’m not going to lie and say ALL the side effects are gone. I still have at time bouts of diarrhea, my hair is still falling out, and my spellimg is not the best but my cycling is GONE and most of the horrid effects are gone. And there are no other drugs left for me. So I guess in the scheme of things I’m lucky. I don’t feel like my brains are crashing out of my head any more or I’m walking around with a lobotomy anymore. I’m becoming a regular person again. Thank God!

  • I’m on 150 mgs. of Topamax, down from 225 mgs. I take it for migraines. I have found it to be helpful, but the side effects (s/e’s) have been very difficult. I have found the depression (mild) and memory issues to be the most difficult issues. I’ve even had some mild acne on my back, which is listed as an uncommon side effect. If you check the Physician’s Desk Reference (PDR), available on-line, you will see that it has a very long list of side effects. What I’ve been doing is taking another med and using other techniques to avoid migraines in order to get my Topamax dosage as low as possible. No doubt about it, Topamax seems to help many migraine patients, but the side effects are really tricky. It’s probably best to avoid it. If you do decide to take it…take the minimum dosage and if you need to make an increase, go very, very slowly.

  • I took topamax for 4 years … now I am having trouble w/ my teeth. Tha new side effect is it will make you teeth fall out or become loose. I want to contact the manufactor of this drug… I am freakin out!!! Has anyone else had this problem??? Donna

  • I cant believe that i found this site. I was diagnosed w/bi-polar 5 months ago. I have been taking Topamaw w/ different combinations of anti depressants. I stopped taking everything because I got scared of what was happenning to me. I was losing everything. Forgetting why I went into a room, and what for. I must admit I am frightened of not being on anything now. Is there any combination that any one bi-polar has found that works? I have taken a lot of different Anti depressents since the age of 17 and I am 33 now. I realize we are all different so meds are different for all of us, i need suggestions.

  • Donna: Please keep us posted as to what you find out about your teeth. My teeth are the one asset I’m VERY proud of. They’re straight and white and very pretty. I’ll go nuts and if they go along with my hair!

  • Mark I have been on topamax for about 3 years and seizure free for that long. I take 400mg a day. I have lost alot of weight. I was a gym rat prior to the seizures and had lost alot thou.Anyway I have since went thru a divorce, went back to school full time and I am a single parent. I enjoy being “little” I get different comments from people some say I look great and of course some say “you need to gain weight. I do not eat alot of course but I am afraid to go off this because I have not had a seizure and I am afraid if I start changing meds it might trigger a seizure and they will take my license for a year I was told that..I can not do that and raise a child…Any suggestions

  • Hi, Rhonda. Thanks for stopping by MadeByMark.

    I can’t say anything here that could be construed as medical advice — I’m not a medical professional, and all I’ve done on this site is share my own very brief experience with Topamax.

    Other people who leave comments here are also merely sharing their experiences … and their comments should be taken strictly as personal expressions … not medical recommendations.

    I suggest before making any changes to medications you’re taking that you have a frank talk with your primary care doctor. He or she is the only one who is really qualified to comment on your situation.

    Take care,Mark

  • I had petit mal siezures as a child. They went away for over forty years. I began to have some simple siezures again after I developed type two diabetes at age 45. The Dr. started me on carbatrol. This controled the siezures with only some minor black outs and a fair amount of drowsiness. We then tried Depakote, same results. I have been taking Topamax for about three years. At first at 100 mg twice a day. Main side effect was mental slowness some gastric distress and some short term memory loss. I still had the minor blackouts. My dose was raised to 200mg twice a day. Not much change in side effects other than I found it much more difficult to achieve orgasm with my wife. Then they tried Keppra that about killed me, we stopped it quick, and went back to topamax. In July Dr’s raised my dose to 600mg twice a day. The deppresion and diarreah and vision problems were so bad after a month and my sex life ended, I would think twice before I would ever let them put me on that high of a dose of anything again. We went back to 200mg. Brian.

  • Mark,Like you, I started taking this primarily for weight loss. I didn’t experience the “loss in food and hunger” as you expressed in the first week, nor did I lose any weight. At least I don’t think I did, I don’t have a scale. What dosage were you on when you started? I’m curious what dosage it usually takes to kick in the weight loss effects. I was started off on 25mg for the 1st week, now, into my 2nd week, I’m up to 50mg, then I’ll go to 75mg, I think for 2 weeks then capping out at 100mg. Comments specifically related to mg and weight loss are welcomed. ThanksRSS

  • I have been on Topamax for 3 months now for headache control, and have had side effects of extreme fatigue, slowed responses and general “fogginess” on 100 mg/day. I’ve decreased the dose to 50 mg/day, and those symptoms have eased a bit, but now I have a terrible and constant “metal” taste in my mouth. Hope it goes away.

  • We just started my 7 year old daughter on topamax as an anti-seizure medication her med goal is going to be 100 mg a day. It will be used as an Adjunctive with Keppra 1500 mg a day.Hope this works. I’m scared as hell of her Grand Mals… they’re so severe sometimes i fear the worst. She has been on lamictal, zarotin, trileptal(allergic reaction) keppra and now Topamax. No bad side effects yet..on 75 mg a DAY..SO FAR… iF YOU PRAY i WOULD APPRECIATE YOURS FOR MY DAUGHTER TAIA.

  • Mark-and everybody else-Thanks for all the great info! I am so glad that I stumbled on this message board. I have been searching high and low for information about the use of Topamax for weight loss. I am 36 and have gained 31 pounds in six months which every doc I see seems to think may be caused by the Zoloft that I was on combined with a severe episode of depression that hit about that same time, and my age of course…LOL. So after seeing several doctors and getting tons of tests run to rule out other health problems…I am now working my way up to 400mg of Topamax per day–I am in my second week now–taking 50mg in the am and 50mg in the pm. I immediately got sick (coughing, sneezing, etc…) and have been running a fever…which I though was a coincidence…but after reading some of the posts, now believe that it might be related to the meds. Also, I am glad to see that the annoying numbness/tingling in my hands and feet is a side effect–I was beginning to think it was something else. I have not lost any weight yet though—if anything..I have been eating more than usual–I really never had a problem with eating too much though before other than when I have PMS which the Zoloft helped with, Now no Zoloft though…ARGH!!! Maybe I just need to drink more water–please send some feedback my way–Everbody enjoy Thanksgiving!!April J.

  • MY husband is on 60mg of prozac daily…. he can become manic if only on antidepressents.. he is schitzo affective… sorry i cant spell it… do you think its ok to take topamax with prozac?

  • I have been taking Topamax for a few months for bulimia and weight loss but I can only manage to take about 60 mg/day. I did lose 30 pounds, but I want to lose more, and at that dosage, it’s unlikely. Moreover, I can no longer drive a car for more than 10 minutes or so b/c I start spacing out and panicking, and if I drive on a highway, it is worse than driving on a street where the speed is slower.

    This is so crazy that people think I’m making it up. It gets worse if I take it with Effexor, Phetermine, Meridia or caffeine to increase the appetite suppression, but none of these interact with it and are safe to use in combination with it.

    My question is, has anybody tried Zonegran, or Provigil along with Topamax? I have heard that Zonegran has less side effects than Topamax but does the same things. Or that taking Provigil with Topamax decreases its side effects. I wonder even if Ginkgo Bilobo (an herb) would help.

    Problem is, the dern shrink refuses to believe any of it is caused by Topamax and won’t give me any other meds that might help.

    Any thoughts?

  • You had some mental and psychological problems before you started the topamax. there is no way possible that you had all these symptoms within seven days of starting this medication. first of all it takes several weeks before the medication begans to really work. You anticipated what you thought would be your symtoms and thus those were your symptoms. sort of like a placebo effect. your personality is a very dramatic one also. and I do not believe this drug did all of this to you. If you were to give this drug another chance and not anticipate all of the negative influence and just act like you are not taking anything, you would not have had such a bad experience. I think this was 90% mental and 10% drug.

  • I can’t stop you or anyone else from drawing their own conclusions or thinking what you want to think. The fact is: different people respond in different ways to different medications. I tried the drug, I had these experiences, and the stories I share here are authentic.

    Given the fact you’ve never met me, you have no valid perspective from which to make judgments about my personality or my mental and emotional health. You’ll pardon me, then, for dismissing your recommendation (“give this drug another chance”) as 90% hot air and 10% shilling for the drug companies.

    Mark

  • Began taking topamax for cluster headaches…I take so many diffeent meds for lupus, fms, diabetes, depression/anxiety that when I didn’t see results quickly I gave up on it. Now that the ch’s have intensified and I find myself in the emergency room in the wee hours a couple of times a week I think it might be wise to give it another try as so many of you have had good success with migraines. Aren’t we lucky to live at a time when we aren’t institutionalized for our malaise? I’m sure I would have been a candidate for the mental ward.Just keep on plugging along until you find something that works and count your blesings. Happy Holidays!kimmeesue

  • I having been taking Topamax since January 2004. It was prescribed for me for migraines. I have suffered severe migraines since I was a teenager. I am now 34 years old. I suffered two very mild strokes from the migraines in 2003. The neurologist gave me very specific directions as how to take the medication. It took me 8 weeks to get to the 100mg. dosage that I have been on since then. I did lose weight from the Topamax, but as a woman who has always struggled with being overweight, it wasn’t a bad thing. It gave me the ability to NOT overeat. I eat normal meals which I haven’t done in years. It does make me a little sleepy, so I take it at bedtime. I did experience tingling on and off in my fingers in the first few months. Other than that, no major side effects. I CAN orgasm!!!

    The wonderful thing is that Topamax did exactly what it was supposed to do. It stopped the headache cycle, which stopped the migraines that I was getting daily/weekly. I have had a few since January 2004.

    All medications will have different side effects on different individuals. None of us react the same. I know for me that Topamax has been a blessing in my life. I have 2 small children, 9 and 7, and the fear of another stroke (I had no permanent damage from the other 2) is certainly worth staying on Topamax.

    It’s been a good thing in my life.

  • I have just started on 25mgs ofTopa yesterday for bipolar-in addition to Celexa (20 mgs) and Tegretol.I specifically asked for this drugto help with the Seroquel and Celexa(?)-inducedappetite increase as well as increase in alcoholcravings after the sudden death of my father.I think any side effects can be rationalized enough to make this a win-win situation.Thanks.

  • I started taking Topamax about 4 months ago as a last resort to control the symtoms of tourettes symdrome. I have never had any luck with any of the other drugs out there exept orap. The side effects with orap were worse than the ticks them selfs. with topamax I have almost total releif from my symtoms. It has also been a great help in my strugle with my weight and OCD. I have no adverse effect at all. This drug has made it possible for me to live a normal life which I have never had before I started taking it.

  • I have a seizure disorder and after I had a seizure at work 6 years ago, I started taking Topomax. I took the smallest amount there is. After being on it for a couple months, I was sooo mellow and didn’t started losing weight quickly too. I was so mellow at work that getting things done didn’t really matter to me. Soon after, I lost that job. Eh, I didn’t really care at the time. I just floated along. I was still on the lowest dosage of Topomax. I interviewed for a new job every-other day for six months, but never got one. I had my mind set on what to say and said it good, but once the companies started asking questions, I couldn’t answer. I could “think” of the answer in my head, but I just couldn’t get the words out of my mouth.

    I wasn’t but a couple weeks after I begged to be taken off of the Topomax and put on Depakote, that I got a job and I’ve still here for the last 5+ years.

    Man, that stupid Topomax just messes with your head. If you don’t agree, maybe you need to try it yourself. If you’re just trying it to loose weight, it’s not worth all the other side-effects. Trust me.

  • I’ve been reading a few of the comments left on here and I’ll tell you about the different things I’ve gone through in the past 20 years from taking anti-sezure medication. These are MY side-effects and my opinions. Take them all with a grain of salt.

    Topamax – Screwed with my head and my thinking, but I did loose weight. I took Ginko Biloba to help my thinking, but it didn’t solve the problem.

    Dilantin – only thing I didn’t like about it was the enflamed gums. My dentist would always bitch about it. But I was taking it for years and my body became immune to it. (Damn it!)

    Depakote & Depakote ER – I took Depakote for awhile with no major side effects then switched to Depakote ER so I could just take it once a day.

    Phenobarbital – This was the first on I took 20 years ago. I was taking too much of it and had to switch.

    Zonegran – Woah! Now that stuff just made me a flat out a$$h0le! Very drematic mood swings! Very high and very low swings. My wife was getting scared of me at one point until she called my doctor and got me on…

    Lamictal – I already have a tremor in my right arm from a head injury (which is why I have the seizures) but this medication makes my arm shake even more. It’s so bad that I now have tendenitis in my wrist for the rest of mt life!

    As of today, I’m slowly getting off of the Lamictal and getting on something new (but I can’t remember the name right now). It’s not Neurontin or anything like that. I asked mt doctor about taking that and he said I’d have to take it 4 times a day. Screw that! I hate taking pills in the morning anyway. Doesn’t bother me at night.

    Good luck to you all and I hope you find a drug that will work for you with the least side-effects.

    Darren.

  • This is the first time I’ve posted, but I’ve been on Topamax for over a year.. I staged up to 75mg and now I’m down to 50 and 25 some nights. I was put on Topamax for migraines so bad I was hospitalized on several occassions – and it has been a wonderful thing in that area – I have missed less work and my family isn’t afraid that I’ll have a migraine that will knock me unconscious with nobody to help me with my baby..

    I’ve lost more than 100 pounds – which is also the result of dieting after a massive weight gain from a high-risk pregnancy..

    My side effects – so much hair loss. I had so much hair.. in the past 4 months – it just doesn’t stop. And I have yet to read of anyone who has had the hair loss stop while they are on topamax, or after stopping it. Surely there is some evidence of what happens – or are there a lot of bald women walking around out there that haven’t found this website?

    My stomach is constantly upset lately after eating.. and I’ve been having tooth pain – but that could be sinuses. The worst is that my tongue always has a coat on it and it burns like heck!!

    I can live with uncomfortable side effects to avoid my migraines – but I would prefer to avoid going bald in my early 30’s if at all possible.. Has anyone heard of anything in this area.. anything positive??

  • Hello…My name is Michell and my Neurologist gave me topamax this week for migraine headaches. The first day I took the pill @ night and felt like never before.. no, not in a good way… I felt so bad!! I had nausea, and a head ache the size of Texas!!COke tastes horrible… now i know this is normal…Im going to continue with the medication for 6 weeks until I go back to the doctor and see what happens then.

    Very good web site. really liked it!!

  • Hello Ive really enjoyed reading your stories.Ive been on topomax for 3 days now.Currently on 50mg per day working my way up to 200mg.Im taking it for a seizure disorder.Im coming off dilantin which Ive been on for twenty years and quite happy to do so.Ill get back to you and fill you in on my progress.(hopefully thats what it will be)Be well every body. Sue

  • Just an update…my hair started to fall out and I had to reduce my dosage of Topamax significantly. At first I had a lot of migraines, but then they leveled off. I also started to take Selenium, Zinc and Biotin which are said to help hair. The hair shedding has stopped. My headaches currently are not more frequently, but they are stronger.

  • It is possible to get the weight loss effect from a very small dose. I started on Topamax last June with just 1/4 of a 25 mg pill and lost my appetite. I increased the dose by 1/4 pill every two weeks, and every time I increased it, I’d lose my appetite for a few days. I slowly worked my way up to 75 mg and after 3 months had lost 8 lbs. At that point the weight loss leveled off entirely and I lost only 2 more lbs in the next 6 months.

    So I’ve been on it for 9 months and lost 10 lbs — obviously not a big loss!

    I was taking it for bipolar, migraine and restless legs. It worked for all of them but made me dumb as a box of rocks. I am now going off it and am so happy to have my real mind back! Even if I gain the 10 lbs back I won’t really care, it is more important to have my mind, and as Mark says, my passions.

  • My gosh!! I am also dumb as a box of rocks…though I have lost quite a bit more than 10 lbs (due to cutting back also)…hair is falling out(sometimes strands, othertimes chunks-just started)…soda tastes horrible…the odd hallucination and more…Is this the Topamax?

  • I was put on Tompamax for nerve damage (carpal tunnel) and took up to 75mg for a month and a half. During that period, my family and coworkers noticed I could no longer talk intelligently and my ability to handle complex issues dissolved. I let my MD know that I was weening (sp) myself off the dope. When off I became my old self with all my faculities.A couple months later I thought I was experiencing hearing loss, because I would be in a conversation and somehow zone out and then I would find myself becoming aware of not being aware (funny). No one seemed to notice this, so it must have been only seconds.I went to an Ear/Nose/Throat MD for testing and found hearing to be normal – very odd.Recently, I experienced an episode early one morning, when I could not determine if I were awake or asleep, and there were lights all around my room – possible siezure.

    Could being on the Tompamax have caused my problems today? There are no siezure problems in my family.

    Have any of you experienced something like this?

    Thanks for your time.

  • I’m in the first week of Topamax. While researching, I came up with some eerie similarities you may want to notice. I was on a doctor-prescribed low-carb diet called a modified protein fast for 4 1/2 years (think Atkins, but low fat, and yes it was complete yuk!) I have migraines, yeast problems and insulin resistance. The interesting thing is that all, I mean all, of the side effects of Topamax that I was warned about, are also side effects of my diet. I quit my diet because I decided that I would rather die than eat another day of only meat and lettuce. The bottom line is that the diet and the drug both induce a ketogenic effect to your body. Not only does it change your brain, but also it changes your blood ph (metabolic acidosis). As long as you know going in what you may experience then you can make good choices. It is certainly not without risk: Lethargy, Daytime Sleepiness, Memory Loss & Brain Fog, Nausea, Constipation followed by Diarrhea and other Gastrointestinal Issues, Hair Loss, Loss of Appetite & Weight Loss, Loss of Libido, Mood Changes and Depression. (This is according to the drug maker’s own website)The only consolations are nearly no migraines, I can eat a balanced diet, (yeah!) have energy to exercise, perhaps lose a pound or two that I gained back after going off that miserable diet. My greatest worry about taking Topamax is losing my creativity. I am a professional artist. The best tip from this blog has been to supplement with magnesium. When I was on my diet drinking all the water to not get kidney stones and to keep the tinglies away, I added the water-soluble electrolytes, such as magnesium, back into my diet as supplements. I had forgotten that I did that. Thanks.

  • I have secondary progressive MS and intractractable and stactic epeliepslesy.. OH and i belong to an HMO Which at this time shall remain namless. i have been changed from neulogistolgist to neuologist, to specialist to specislist to spelist , the last one was a pain specialist, and the one before that didn’t know copaxone for MS ws a once a day RR MS drug, no a SPMS drug, i have been through proubly every primary first line drug and 3/4 of the second line AEDS that are out there, have multilple refurals to level four epilsy centers but no one wants to touch me because i need two neurologougists in the 18 nmonyths i have been on AEDS no one has ever cheched my liver function , kidney function (which was damage when i gave birth to my children ) or checked for inter action with my MS medications that kept my MS in remission for the last four years.. How about some help..Now i am currently on topamax 300 nmg after they relized i was severally allerergic to trilepltal i told them i was allergic to tegretol in the beginning, and keppra made me suisidal and they incresided it from 1000 mg to 3000mg, change that to lamictal at 300 mg. valium-10 mg/4 x a day and diastat in stasus or in a cluster.

    krista

  • I’ve been on topamax for a year and a half for migraine prevention. I think it is a wonder drug! I used to get about 4-8 a month that were so bad I couldn’t get out of bed. Now I have maybe one a month and that one is usually before my cycle and I can usually knock it out with two tylenol. I experience a few mood swings as side effects but sometimes I wonder if it’s just stress and the fact that I have a full time job and two kids under the age of 7. I started Weight Watchers 8 months ago and lost 42 lbs. I suggest topamax for migraine prevention to everyone I meet that tells me they have migraines. Oh yeah, and my sex life is amazing!

  • I beleive taking lexapro gave me an electrolyte disturbance called hyponatremia. I stopped without taper. Now I am swollen and sick.What do I do to feel better?

  • I’m taking Topomax for the second time right now . Round one was great. I slowly worked my up to 200 mg with minimal side effects and had excellent results in helping to control my mood disorder. I had to stop taking the drug during pregnancy and have recently gotten back on it. Since the postpartum period was so rough emotionally, the doc and I decided to just stick me right on 100 mg instead of working up slowly. After about a month and a half I started having flu like symptoms (diarrhea, body ache)…this has been going on for about 4 weeks now. I have this strange metallic taste in my mouth at all times. I’m not sure if it’s the Topamax or not since the symptoms didn’t start right away. Perhaps the difference is the lower dosage??? Has anyone had an experience like this?

  • I’ve been on topamax for about 2 months now for migraine headaches. My headaches are completely gone and it feels great, but everything else that could possibly go wrong seems like it is.I’ve lost 20 pounds in 2 months. Im 5’1 and i was 115 and now i only weigh 95 lbs. My parents think i’m on drugs or have an eating disorder but i’m just never hungry. I feel like i could go days without eating and not even be affected by it. Eating is painful to me now, i dont have a taste for anything and nothing sounds remotely appealing. I can’t concentrate on a damn thing and trying to have a conversation with me is the most rediculous task you will ever attempt. I feel like i’m confused all the time and if u ask me to remember something its not gonna happen. I feel like taking topamax got rid of my migraines and gave me ADD. Someone please tell me there is an alternative drug similiar to topamax but that wont make me feel chronically confused all the time.

  • Mark, I had a similar experience with Meridia, didn’t realize I was in trouble until driving home from working out and had a seizure, chem panel showed I had gone into ketoacidosis from not eating, very scary and left me with some bad side effects. I take topamax for migraine control and am trying to get off, having a very diffucult time doing it. Good luck to you. Also, there is now way that any extra pounds could be more important than the essence of who you are. Find and activity that you really love and the hell with the few extra pounds. We all get older…

  • Hello all,This is my second time on topemax and after being on meds for approx 10yrs now I urge everyone to have patience and DO YOUR OWN RESEARCH!! USE THE INTERNET ! ASK QUESTIONS! AND GO TO THERAPY! drugs alone will not make you better! In addition, do not underestimate the importance of playing with dosages, times of injestion, and other factors. Meds are an extremely precise science.. Think of yourself as your own experiment. Even the doctors are not certain! Everyone is different, as shown by the vast # of postings for one drug on the same site!! Keep a journal. That is the only way to have accurate records. Exercise. Find activities that you love to do. Topemax can be a good drug, however for myself I find it works best when broken up into small doses – so it does not hit me in one gigantic explosion. It is worth mentioning that I am on Wellbutrin 150mg, concerta 18mg and clonipzam as needed. Take care and be as self aware as possible.. Many times your doctor may or may not tell you or even be aware of certain side effects. Go to your psy doc’s ready to make a case for yourself. Finally, also be honest about ALL the other substances you are injesting into your body. If you mix recreational drugs, alachol, and or SUPPLEMENTS with your meds, you may be reducing the effectiveness of the drugs that you are taking. There is a rule in medicine, if you are on more than five of ANYTHING, you will incur side effects. I know it is hard and frustrating as hell being on these meds, but everyday that I take these pills, it is a choice between life or death… I choose life. Lots of hugs for you guys! Keep writing and posting. It can only help. There is no lonlier place than one where where no one understands or empathizes with a life on meds.Deborah

  • Has anyone seen an improvement in old (acne or otherwise) scars with topamax?? New research indicates this as an amazing side effect.

  • i have been taking topa for 5 weeks for chronic headaches. just increased to 50 mgs 2x/ day. only side effect i haven’t noticed others mentioning that i worry about is pain in both wrists and forearms, and i feel as though i have lost my ability to grip things as well. this has only begun in the last week after i went from 75 to 100. thinking of waiting it out…or going back to 75. anyone else experience anything remotely like this? i saw only one similar post from a while back.

  • I’ve been on a 75 dose for my migraines now for a bout a month and I can’t put into words how happy I am. The only side affect that I have noticed so far is that I have slightly – and only slightly less awesome orgasms… (31 Male btw)

    I’ve had migraines since I can remember – I have imitrex, anti nausea meds plus vicodin – NONE of them were working!!!! Finally I got someone other than my GP to take me seriously & I went to the Neurologist. He gave me this RX. This year alone I was having 1 migraine a month and they were lasting up to 5 days! Needless to say they needed to be addressed; so far it’s been over a month now and NO MIGRAINE! The Dr I went to said that I might lose weight but by no means was it a ‘for sure’. I didn’t realize it was actually given out to people for this. I think it has affected my sense of taste a bit as some of the soda that I used to like doesn’t taste very good any more but hmm on the list of side effects I think I have to chalk that up as a + 🙂

    Best of luck to you all!

  • do you think anyone can have side effects at only 15 mg a day? esp. side effects like poor sexual appetite/orgasm? isn’t 15 mg too little to have such an effect? even if true, have people experienced that their sex drives go back to normal once they discontinue the drug?

  • Hey Everybody,I seen the gamut of responses to this medication which has been beneficial for some and a nightmare for others. Its good that they’re sites for people to get a better idea of a medication such as topamax, my only concern is people read too much into these responses. Remember, these reponses are only a small select from the population who are actually on this medication. I too was originally on topamax for migraines, but prematurely stopped becuase of muscle pain. However, I think if I followed increasing my dose these symptoms could have dimished. This medication takes some work and its not for everybody (that’s for damn sure). But for someone to post a response such as “DONT take this medication- its horrible!!” is foolhardy and personally, irresponsible. As you can see, many people have benefited from this medication for different reasons. Currently, I have been on Tegretol and will have to stop because today I noticed a mouth sore as well as a sore throat (possible signs of the nefarious “Stevens- JOhnson syndrome”). So, am I justified to post something such as “Don’t take Tegretol- you may burn from the inside out”. Of course not. If I did, I’m sure there would be a plethora of responds who could attest to the benefits of Tegretol.As for myself, I hope to start 25 mg. of topamax soon and go very slow ( I also have read that is medication is notorious for people re-trying 2 or three times). My Migraines have been a giant weight on my back and I hope this round of topamax is better. As I said before, these aren’t easy medications to take so I send out my best wishes to everybody. Remember, give the med a chance, because as I have read the symptoms go down as you increase the dose (does seem bizarre, doesn’ t it). If it doesn’t work out, then the med wasn’t for you. My e-mail is open for any resposes, chats, words of encouragement.FInally, I would like to thank Mark for making this web-site.Take careMark M.

  • I have been taking topamax for about 7 mos. now. 25mg morning 25mg. evening, along with 500mg. of dilantin. I lost about 28lbs. the only thing is when i eat and lay down, my stomach will be really crampy.

    Has anyone else had this problem??

  • Most all of my side effects went away after two months of taking my topa (I’m going on fourth months now)The spelling and concentration problems were the worst! But they are gone now! My migraines did go away 100%. The problem I am having now is horrible eye problems and my dr won’t address it!! My eyes are killing me and at night I see lightning type flashes in my vision. I started taking topa for nerve pain and migraines from a neck injury. Now, I believe I am suffering from headaches caused from my eyes. The flashes started once I hit my 100mg dose, which is where I’m still at, and the eye pain at around my 2nd month into the med. Now, how the heck do I convince my doc that it’s the med causing the problems??!! One thing to remember is to drink plenty of water while on this med–it really does help with the side effects!! And..who wants a kidney stone. 1/2 oz of water per lb of body weight per day is what I have read. Good Luck!

  • Andy,Topamax hits the temporal lobes big time. I mean it really affects this region of the brain. This is most probably the cause of your problems (I’m not the doc though). Your doctor should know this about Topamax. Go get a new doctor if he’s in the darkMark

  • today is my 2nd day of 25mg Topamax. I was prescribed Topamax due to migranes. I’m Hypothyroid for the past 8 yrs. & have gained 50lbs. cuz of it. Now that i’ve read that a side effect is weightloss I’m a bit hopeful.Has anyone on Topamax lost weight even w/ Hypothyroid? if so, what dosage were you on? and also, how soon before you saw results? thnx.

  • i’ve been on it for about a yr.200 now lately i’ve been really tired and i noticed my hands and feet are swelling up alot and sometimes my legs as well,i also feel warm and when its hot people comment on how red my face gets. please let me know if anyone else is having this problems, i would really like to know. thank you

  • hey, just curious what dose you were on, i’m on a lower dose since it’s just for migraine prevention (i just started), but i’m trying to decide how high to increase the dose to (25 mg – 100 mg). also, i’ve heard that if you take it just for weight loss it the side effects are way worse, i don’t know why that is though. thanks!

  • Hi, I’ve been reading this site since March, when I was prescribed topomax. I was diagnosed with bipolar and suffered with migraines since I was 8. I started from 25mg at night. Gradually increased it. I see my doctor every 2 weeks and take blood test to see changes. Now I’m taking 50mg in the morning and 75mg at night. I’ve been taking before prozac, celexa, paxil, last was effexor that I took with topo, but stopped taking about 3 months ago. I’m carefully watching changes in me as I had bad experience with other drugs. S/e are usual for topo, tingling in my feet, lost of concentration, lost of words when u need them… after a few months on topo i don’t have my usual morning migraines at all. I was so used to live with those so it is a huge thing for me. I had TMJ and sleep with night guard but that didn’t help me much before. And now it is gone. I have flashes like I’m on menopause, but I’m only 35. I drink water nonstop. Start loosing weight only at 125mg. in 2 wks lost about 15 lbs (I’ve gained about 50 lbs with celexa) I had short term hair lost, but started to take vitamins and it looks back to normal. Just need to get back my concentration and abilities to think clear. Feels like I’m sub spacing time to time. Do not hear others when they are talking to me. But I’m working actively on the physical and mental balance to help my chemical changes to get along. Thank you all for the information you’ve shared here. It was very helpful.Irena

  • first of all let me just say that this drug really helped for my migraines. i used to get 7-10 a month, let alone they linger around for days or weeks and Now i get 1 or 2 migraines if that or just a few headaches…i have been taking it since March till now Aug (6 mos). I had pretty much every side effect listed but it was worth it. The major side effect i went through so far was the weight loss, being 4’10 i weighed 145 and now i weigh 105 so we all know that was a big change for me. But now i’ve fighting a bout with its less known side effect, hair loss =( Some are lucky to not get it, unfortunately I did. Its not severe yet, but has anyone else experience this too? I haven’t gone bald (yet **crossing fingers) So i called my Dr and i’ve reduced dosage and started taking vitamins, so we’ll what happens there. Please email me back ’cause i’m so sad now let alone I dont have thick hair to begin with! But then again, maybe its a blessing in disguise because my husband and I were planning on having a baby by the beginning of next yr so weening off of the medicine to clear out my system is probably a good thing at this time…I really like this medicine, other than this stupid side effect LOL I just want my hair to grow back =(

  • I am having the same problems you are having. I cry myself to sleep every night thinking morbid thoughts convinced that I am being abandoned by everyone I love. I am taking it for mood stabilization and although I love the clarity and focus, I am not sure if I can take the emotional toll it has given me.

    thanks for the article, very interesting perspective.

  • Great site about Topamax. I’ve been on this drug for about a year and a half (150 mg. daily) for migraine. I also have spinal cord damage with nerve pain which it helps as well. I get some of the side effects that many you have described. The most disturbing one I’m dealing with is the hair loss. I had thick hair and it’s thinned to the point where you could practically see my scalp. I am strongly considering going off the drug for this reason. I’ve suffered awful migraines since age 12 and this drug is like a miracle – DRAT – why does this have to happen! Has anyone here gone off the drug for this reason and grown back the lost hair?

    Also, I’ve noticed that being on Topamax for a while, you do regain your appetite after a while so hang in there, it seems to be related to increases with your dose but once some time passes your body adjusts.

    karen

  • I HAD A HORRIBLE EXPERIENCE WITH TOPOMAX! I was taking it for migraines, but they were nothing compared to the way Topomax made me feel!!I gained weight, I fogot words in the middle of a sentence, I had terrible anger outburst, I had depression, I was holding water, and had irregular heartbeat, I WAS ALWAYS TIRED, TIRED WITH NO ENERGY AND FELT HORRIBLE ALL THE TIME!Worst of all after being on it for seven months, getiing off and going to heart Dr. to find out I have a leak in one of the valves to my heart, and my heart is only pumping at 50%, I am 42 years old by the way! I always had pvc with my heart, but not the other problems until being on Topomax!!I think it is a horrible drug, and am asking my Dr. if Topomax cuased these heart problems.I found a wonderful Chiropractor who has taken away my migraines, and without terrible side effects- that may be life-long!

  • Hi, it’s me again. I’ve seen two eye dr’s since my post and they both tell me that my med is not causing the problem. I just went from 100mgs to 150mgs and had to back down to 125mgs because of increased anxiety and anger problems. wow. My headaches were under control until I had an esi. They seem to be ok now. I did have some pretty intense sinus pain last night, so I’m thinking that, and after doing a lot of research–you have to remember that the topa will dehydrate you. This includes your sinuses. I now believe this is where my eye pain is coming from especially since I have a clean bill of health from two eye drs. I also picked myself up some drinks with electrolytes in them. Most all my side effects are gone except the tingling in my hands and feet when I get into an air conditioned room and get too cold. I’ve been on topa for five months. But…I still wonder about the lighting type flashes I see at night. The eye doc said that the topa can take away my pain, but not the other problems that come with a migraine. I never had flashes with a migraine. Any thoughts. As for the weight loss–even at my dose, I’ve only lost 15lbs, because I like to eat!!

  • I took 25mg daily topamax for one week for bi polar (I REALLY have anxiety, agoraphobia, and tinnitis, but try convincing a shrink you know how you feel), and it turned me into a turnip. I do not remember much of that week, only fragments. Told my doc, and he wants me to keep taking it. I said no. Depersonalization, somnolence, memory loss, just horrible… I am a math major and I couldn’t remember the simplest rules. I already give up food for math (my passion), and there is no way I will give up math for Dopamax. Do not take this medicine unless your life depends on it (siezures) unless you enjoy being a zombie. I can take benzodiazapines for my anxiety etc. (I use ativan) with nearly no ill side effects other than occasionally getting drowsy, but I can’t take it just before exam days (gotta drive the mind like a ferrari). It would be nice to be able to convince my doc that I only need to be on this one med…

  • I am so tired of feeling like a zombie, so I am switching from topamax to dilantin. How long has it taken most people to wean off of Topamax and how did you break down your dosages when you were taking yourself off? I’ve heard if you don’t take yourself off Topamax slowly you will have killer headaches.Thanks,Patty

  • I am 17 years old and I was just diagnosed with Juvenile Epilepsy and I was put on Topamax taking 6 25mg pills a day and the side effects I have encountered were memory loss, depression, fatigue, pretty much everything everyone else has mentioned. I found out I have epilepsy the day before moving away to college so its been a tough time and I really dont know if there is another option for me or another medicine for me to be put on. If I am not on meds there is a 90% chance for me to have a seizure and well last time I had 8 staples in my head and lets say it wasnt to fun so…

  • I took topamax for several years for migraines. My doctor had me taking up to 200 mg/day. I experienced many of the side effects mentioned including tingling in my hands and feet (even after a couple of years), memory loss, hair thinning, fatigue, forgetfulness, etc. I also lost weight when I first started taking the drug. It got to the point that my doctor was concerned because I kept losing weight. The weight loss did cease, though, and I ended up gaining some back. In August I started to wean myself off of the drug because I have heard about the potential problems that taking the drug can cause an unborn baby. I am not pregnant now, but hope to be in the early part of the new year. I decided to start weaning myself off of the medicine so that my body would have plenty of time to be rid of it once I do get pregnant. In order to wean myself off of topamax, I filled my final prescription, and for that month I lowered the dose bit by bit until the bottle was empty. I haven’t had any terribly noticeable side effects from getting off the drug. I am relieved about that since I had taken it for so long. But, I am nervous about my migraines increasing again…

  • Interesting to read all the comments. I have been on Topamax for a year. I take 300 Mg every night for severe migraines and cluster headaches and sleep disorder. I immediately lost 40 pounds in 3 months and the headaches dropped from 6-7/week to 1-3 month. My insomnia episodes were drastically reduced as well. I am also diagnosed with clinical depression and recently switched from Zoloft to Lexapro and take Elavil at night for sleeping. The biggest issue I have with Lexapro is the hair loss and it concerns me greatly. I have experienced limb numbness and some brain fog–but never knew how much to attribute that to occasional insomnia still or to the depression. The hair loss has become epidemic and I’m now obsessed with it. I try to stop taking Topamax with immediate negative results for my other issues. I gain weight instantly (10 pounds in a week), my headaches increase to almost 5/week and I stop sleeping. I say it’s worth far more to stay on the drug–but I truly don’t want to be a bald woman. I have a positive self image–but it’s starting to suffer due to my hair loss. I once had thick hair and considered myself attractive regardess of my weight. I am 5’1″ and my weight fluctuated drastically due to depression and insomnia. I now hover b/w 120 and 130 lbs depending on the dosage of Topamax. I had weighed 175 lbs at my worst w/ the migraines and insomnia. Can anyone suggest what to do w/ the hair loss issue? I just started taking biotin vitamins. I am desperate for some answers. Help!!

  • Greetings all,I took Topamax for one day until having an allergic reaction to it because it contains a sulfur molecule and I am allergic to sulfa-drugs.

    I’m currently experiencing clinical bipolar depression. Somedays I cannot get off the couch to do anything and I am basically dependent on others to take me to my psychiatric appointments.

    I’ve tried 21 different anti-depressants and mood stabilizers but could not handle the side effects.

    I’ve also been hospitalized inpatient for suicidal thoughts, overdose and cutting behavior.

    Topamax gave me one good day out of the past 9 months. I did notice the diuretic effect immediately. The need to drink the extra water comes from the warning of possible kidney stone formation as indicated on the package insert.

    I am horribly upset that I cannot take Topamax as I saw it as a possible life saver for me.

    For anyone thinking of trying it for bipolar disorder do so. It may not work for you, but it did for one day for me.

    I would gain 30lbs just to have my mind stop racing and be able to function like a ‘normal’ person.

    Good luck to all and God Bless.Katya

  • Does anyone take Topamax with Depakote ER for migraines? I take both and STILL suffer with awful migraines that last 3 days!!

  • I had such severe side affects that mostly went away…unbelievavle thirst..tingling..of hands and feet…less of An appetite..but the worst never went away..the hair loss..and change in hair texture…I coudnt deal with that..I also really didnt loose weight maybe 2 lds in 2 months.I have been off now for a month..no problems..but my hair loss is still continuing.MY SCALP TINGELS ALOT ALSO..anyone have this problem

  • Topamax 100 mg. No weight loss which is OK. Headache gone Perfect. My problem is profuse hair loss. I havve been on the meds for 2 months. I need help. Does anyone know what to do?

  • My experience with Topamax has been about as brief and almost as negative as Mark’s.

    The long story is below. The two new things I can add here are these:

    1. For me, Imitrex is probably a much better treatment than Topamax for my migraines.

    2. Topamax had a serious impact on my ability to run.

    For me it was prescribed for migraine prevention. Previously, I have been taking Imitrex or Maxalt whenever I have I migraine. As I often say, for me the only side effect of those drugs is that I feel normal – no pain, no nausea, no extreme sensitivity to light or sound.

    The main problems with Imitrex and Maxalt are cost, bureaucracy, and fear. I use an average of about fifteen 50 mg Imitrex or 10 mg Maxalt tablets per month, which at about $20 per tablet runs about $3000 to $4000 per year. The bureaucracy part is that you can only get nine tablets at a time and sometimes one migraine requires more than nine, so you have to make sure you refill before you run out. You also need a doctor willing to write a high number of refills, so you don’t have to keep calling in or, even worse, keep making visits just to have your “ticket punched.”

    The fear is this: Imitrex, Maxalt, and other triptans work by tightening blood vessels in the brain that have overexpanded and are causing pain. Maybe they will also squeeze the blood vessels in the heart and cause a heart attack or possibly cause a stroke in a different part of the brain. Some doctors don’t worry about this because there is some research that shows that the triptans only affect the blood vessels causing the migraines. Other doctors don’t know about that research, don’t believe it, or maybe have access to something that tends to say otherwise.

    Imitrex has been in use for about fifteen years now. There has been no study to show that Imitrex users are more likely to suffer a heart attack or stroke than a migraneur who does not use Imitrex or another triptan. In fact, I believe I read about a study which concluded that the chances were about the same. On the other hand, it only took about three or four years of use for the world to figure out that Vioxx was such a problem that Merck has had to pull it off the market and defend itself against thousands of lawsuits. If Imitrex was that kind of problem Glaxo Smith Kline would have been in the same boat a long time ago.

    I believe that anyone who suffers from migraines should ask his or her doctor about Imitrex, Maxalt, Relpax, etc. If the doctor does not want you to try them ask why not. See if it is related to fear of a heart attack or stroke. Ask if there is something else that you are at much greater risk for than everyone else. Then go to a second doctor and if the second doctor gives you the same reasons, they may be right. If not, try a third. Also, if you get a prescription and it doesn’t seem to be working, make sure the doctor is allowing you to try the maximum dose or giving you a very good reason why you shouldn’t try the maximum dose – and then remember what I just wrote about a second and a third doctor.

    Now, about the running. I am 47 years old and have been running for five years. Normally I can run 5 miles at 10 minutes per mile very easily. At that pace my pulse would normally be around 120. At 9 minutes per mile it might be closer to 130 after five miles. At either pace I would not be very tired afterwards.

    I started Topamax at 25 mg per day. On the second day I went running at a 10 minute pace and I felt so tired that I had to stop after four miles instead of running five as I had planned. I did not notice my pulse. On the eighth day I increased the dose to 50 mg per day and I went out to run. I ran only 3/4 of a mile and felt horrible. I had been running at a 9 minute pace and noticed that my pulse was at least 180, maybe higher. I rested and tried a few shorter slower runs and had the same result. Three days later I tried again. This time I ran a mile in 10 minutes and found my pulse at over 150 and did not feel well.

    The running problem was not the only problem. At 50 mg/day especially, I am confused, have problems with words, math, schedules, and memory. I also make more mistakes driving, like missing turns and having a hard time deciding whether it is both safe and legal to make a right turn on red. I am trying to start a new business now and at that dosage I could not figure out what I should be doing next. Things came to a standstill.

    So I have started phasing out the Topamax. Today, at 25 mg per day, I am beginning to get things done and feel like myself. I will probably cut it out completely in the next few days, but maybe I will try 12.5 mg per day (half of a 25 mg tablet) for a while to see what effect it has. If it could eliminate the most severe migraines and reduce the Imitrex expense without messing up my mind, that would be good. Otherwise, I don’t need it.

  • Hey everyone, I wrote several messages above on august 3rd about dealing with topamax & hair loss. well i just thought i’d give an update on how i’m doing…Since august my hair loss slowed down. Don’t get me wrong, it hasn’t stopped completely, according to my derm doctor i am losing the normal range of amount of hair right now (which to of my paranoia still seems a lot just cause i had lost a lot but for others no one had really noticed cause i guess i had a lot of hair.

    Anyways, taking vitamins, biotin, centrum, selenium, & zinc had worked for me. The other day i went to a hair stylist to get a hair cut and she noticed that i have a lot of baby hairs so i’m assuming that means my hair is growing back since the summer when all of this had began. Since august, I had stopped taking the topamax and started taking a low dosage of elavil in early sept (of course by dr’s orders). i did that till the end of oct. and that didn’t really do shit so unfortunately I went back on the topamax again because the last week of oct I had a migraine that lasted for 7 days. I’m just taking 50mgs and the vitamins still, but its better than the elavil. The loss of appetite side effect came back so i lost a couple of more pounds, so i pretty much down to 100lbs now.

    Steve, unfortunately the topamax does make you loopy and not very “smart” for awhile…i usded to have a great memory and when i started taking it my brain went to mush for that first month until i adjusted, but honestly it was worth it because it reduced all my migraines. It just sucks cause it does take a toll on ya = both migraines and all these crazy side effects all of these drugs give us.

  • I have taken Topamax for 3 years for migraines. I have found most of the side effects have worn off, except some memory and word loss. That’s why they call it “Stupamax!” It makes you feel stupid sometimes. However, to me it is worth it because my migraines were debilitating, and even Imitrex did not always work for me. I have taken every drug available for migraines as well as accupuncture. Topamax is the only thing that has helped me!

  • i take a very low does of topamax (between 25-50 mg) for migraine prevention. i experience extreme irritabilty/anger and have very aggressive reactions towards people. has anyone else experienced this?? as for the migraines… it’s a miracle drug… i just feel it wreaks havoc on my moods… hoping that the negative side effects will subside soon…

  • I took Topamax for over one year from November 2003 to January 2005. I lost 25 pounds in the first three months! This was an incredible change for the better for me. My mood was totally stable and I did not experience any odd side effects. I personally believe that this drugs effects each person differently but I also know from personal experience that it effects each person differently at different times in their own lives. I tried taking it again about a year ago because I had gain a considerable amount of weight back. It did not cause any weight loss and I did not like the way I felt while taking it. I just started taking it again a few days ago and I’m experiencing loss of appetite again and being able to sleep and a experiencing less anxiety.

  • Hi,

    I’ve read through the posts. I’ve been taking Topamax now since May and am currently at 550mg for migraines. Bipolar also runs in my family. I was on lithim about 13 years ago before we started having children. Anyway, I have been lucky in not having many side effects. I haven’t had brain fog and much difficulty with finding words or doing math problems. I just finished a physics course and I can’t say that I had more difficulty with it than I would have had prior to being on topamax. I mean I invert numbers with or without the help of topamax. I did notice shortly after taking topamax that I wasn’t so sensitive to the lazer wands that professors sometimes like to use to highlight their lectures. It also seems that when I read, I am more able to keep track. So there actually was some positives that I noticed. I don’t feel brain fog at all. I think when I first started taking it, I did notice the tendency to get lost while driving. I didn’t actually get lost, but could see the tendency. I do have hair loss though. I am also on a low calorie diet through HMR through Sharp Health Plan. I started topamax about the same time and one of the symptoms of the diet is hair loss, so it is hard to say which is which — but I am thinking both. Anyway, I have lost 90 pounds in all. I am sure that topamax could be helping, but the diet is meant for people to lose weight, so whether I was on topamax or not, I would be losing weight. That was not my purpose in going on topamax. Basically, it was the migraines. I have atypical migraines in that I have them not only on one side of my head, but on one side of my body — down my back, dowm my one arm, leg, hand foot… The one side that is effected, is contracted. I have gone to a massage therapist and she could tell which side was effected in that it was bunched up and hard. So I am thinking it is nerve related. The nerves effect the musculature. In any case, it goes on for days, then there is a reprieve and it switches to the other side. It can go back and forth and is usually kicked up by my cycles. I would do about anything to escape the pain. Baldness or pain — it truly isn’t a great choice. Though, I have a ways to go before I am bald. But I really hate the pain and I can’t see going back to it. The topamax doesn’t take it away — but it is less. I am also taking 150 welbutrin every morning as well. My ultimate plan is to be on 600mg topamax and just stay there for a while. It seems that it is working. 200mg didn’t stop the migraines. They are hormonal for me — and when that time came — the migraines still came. My ultimate goal would be for them to stop — but that hasn’t happened yet. It is better though. So time will tell — but I don’t believe I will be going higher. I was just looking to get one prescription where it would be one co-pay. At 600mg — that is the case. So that is my story thus far.

    Kim

  • Have only skimmed the postings, so I am just providing a comment. I took topamax for about 2 years, prescribed by my psychiatrist for insomnia and post traumatic stress disorder. I was already thin, but I believe it may have “helped” me lose more weight and/or maintain the weight loss. I suffer from PTSD (since a very violent nearly fatal attack) and depression, both of which affect my ability to sleep. Topamax is being used by some medical professionals as an off label use to treat victims of violence. Unfortunately, due to work-related stress, I ended up quitting my job, and have not been able to find employment in over 3 years. Shortly after I quit my job, I had to give up COBRA and went off of all of my meds. I would love to go back on Topamax. I slept and felt much better when I was taking it.

  • Can anyone tell me how long it takes to stop the hair loss after Topamax? I was only taking 50mg and have lost half of my hair over the last 6 months. I have been tappering off the drug to see if it will stop the hair loss.

  • I have been taking 200mg of Topamax for 10 years, since I was in 5th grade, for my epilepsy. Yea, the weight loss is great since I never really have to worry about it and if I overeat, I can pop an extra pill at night and loss three pounds by the next day. (Don’t do that!) It has taken me a long time to realize I am caught between the addiction to weight loss associated with the medication and the deterioration of my memory. Looking back on my life, I find, and I know this is hard for some people to grasp but finding this website was very comforting, I find I don’t remember much and I have to rely on friends and family to fill in the gaps. This site helped me realize I would rather be slightly less vain about my weight and remember my life then continue to knowingly take a drug robbing me of beautiful moments. I tell people all the time, when I can’t recall a peice of information or use a big word that is on the tip of my tongue (I’m an English major)that I use to be a lot smarter, and I did. I urge you, if you are taking this medicine for sensless reasons…please reconsider. I look in the mirror everday and don’t recognize the person looking back, loosing myself ever so slighlty to Topamax.

  • How soon did any of you notice the hair loss? I started on the topamax 2 weeks ago, and I am so worried about the hair loss that I am thinking of giving it up. My husband wants me to stay on it because my headaches are so much better already, but I just don’t know.

    Also I have fibromyalgia, and I am on Lexapro for it. If the topamax effected your libido, did it resolve itself with continued use?

  • I’ve been on Topamax for a month for an eating disorder. It’s helped with that, but I’m going to try counseling instead. I love the weight loss, of course, but these side effects aren’t worth it. Yes, in response to Twiggy’s post, I have the aggression, anger and irritibility too! I’ve been (generally) happily married for 5 years, and since going on this stuff I’ve fantasized about taking off with my babies sooo many times, I know something’s wrong in my head! So, enough Topamax for me! I’ve always been a firm believer in therapy for emotional issues anyways. I believe medication is certainly always an option, too. I appreciate all the posts and input from everyone.

  • I have been on Topamax for approx. 2+ years now starting with 25mg. and now up to 300mg. per day. I feel it has definitely lessened my debilitating migraines and I lost about 35 lbs. Problem is I have a great deal of stomach issues now, ulcers, irratable bowel disease; I never had any of this prior to Topomax so I’m unsure if it’s related. My husband is convinced that it is because of all of the warnings that are on the packaging. Anyone else with any of these same problems?

  • I started topamax 25mg 8th December 2006, by the end of December I was being treated with anti-biotics for a sinus infection which is still ongoing it is now the 8th January 2007. I have still got daily chronic headaches and migraine and don’t know how long the side effects are meant to go on for. The GP hasn’t connected the two but after a day on the web I can see that they are. Do I stay on them and try and weather the storm or do I come off them now before I get worse, I am now up to 75mg a day and have to say feel dreadful!

  • i was on topamax for migraine for a year. it worked wonderfully, but i had memory problems along with emotional problems i had never experienced prveiously. i cried constantly. i also lost a great amount of hair. the hair loss slowed down in the months after i went off the topamax, but it took a while. it has mostly stopped now, but i have to use colder water. isn’t that odd? if i use hot water, my hair falls out like it did before, in clumps. i have very fine hair to start out with and this devastated me.i wish these side efffects did not exist, because i found the effect on my headache a huge change in my life for the better. i also hated feeling stupid all of the time and just not caring anymore about anything. i feel like myself again now and finally have regained some of the weight (i lost too much weight on topamax- it didnt’ matter what i ate, i just kept losing weight).good luck to everyone- it was really great to read everyone’s experiences and realize i was not imagining the side effects.

  • I have Bipolar II and have experienced some of the symptoms mentioned on this site, the most disturbing being: increase of depressive symptoms, hair loss and hostility. The hostility was really a surprise to me. I’ve experienced many side effects on other drugs that treat my disorder, but I’ve never had this one, and no, I’m not a pot smoker or a drinker. But what doesn’t work for one person may work for another, and I’ve seen that “rule of thumb” at work since my diagnosis as a manic depressive person. The thing is, my current doctor doesn’t always listen to me and although he may be trying to come up with other reasons for things like depression (S.A.D. – which I do have), I know my body best. There is a perceptible difference, to me, once enough of this drug is in my system. Although I have stuck with this doctor for 3.5 years, I hope to find another doctor who at least gives the impression of hearing and taking me seriously. I have had other empathic doctors, so I know this is possible. Sometimes, I wonder if we wouldn’t have so many problems if doctors took into view the whole person and treated him/her with respect and compassion. How did that drop out in the search for the perfect drug cocktail?

  • PS I just wanted to say that it does bother me to think that someone might use this site or any other site to determine whether they will comply with doctor’s orders to get a drug prescription filled and at least begin the course of prescribed treatment (Especially for those who may need medication for an affective disorder). I was already stabilized on Depakote ER and taking Klonopin when I began Topamax to address the significant weight gain which Depakote has put on my person over the years. Ideally, I’d like to lose 70 lbs, but would settle for 50 (I can’t believe I’m saying this, how, just 7 years ago, I would not have believed how large I might become).

    Any side effects I have experienced with the Topamax may have been caused by the interaction of the drugs I am taking, so I don’t think my, or anyone’s else’s one experience with Topamax can determine the course of anyone else’s ideal drug combination.

    I will hand it to the creator of this site, though, that it’s nice not to feel alone in this world of meds and their effects. It has been the brave candor of memoir writers and people who aren’t afraid of speaking about their experience that has carried me through many a rough patch. Just knowing that, like some of you said, we aren’t the only ones to feel and experience these things gives me the chutzpah to keep trying, keep asking questions, and keep expecting good treatment.

  • Hi Mark,I was taking Topamax for my Bipolar disorder and at first I really believed it was helping me. But then the side effects just as you described began. I discussed them with my Pysch. Dr. and he perscribed Aderal. I was now taking two medications but the side effect got worse. The ONLY GOOD I got out of those medications was a 60lb weight loss in 11 months. On the down side I had a nervous breakdown. I’m now taking Trileptal for my Bipolar and it seems to be working great. But I am very fearful of gaining the weight back. I was considering taking the Topamax again that I have left for just weight loss and that is what brought me to your website. I want to THANK YOU for doing your experiment and writing about it because you reminded me that the side effects are NOT WORTH IT!! I will be watching what I eat and exercising more often. People need to be aware that perscription drugs are not something to mess around with and to always follow your Dr.’s instructions.Thanks Again!

  • My doctors want to start me on Topamax but my insurance company is fighting it saying the medicine is not a good enough use for Fibromyagia. I have heart trouble,six heart catherizations since 2000 and stent placement. I need to know if this medicine will cause my heart more problems?

  • Hi! I took Topomax for 2 years for my bipolarism. One night around 1:00 am I woke up to use the bathroom and was in excrutiating pain.I waited an hour to wake up my husband to take me to the ER.Once there they tried to get a urine sample via cathertization (3 tries and no luck!) and finally gave me some demerol and took some xrays.I had 12 kidney stones that had not passed and the largest one ended up tearing my ureter and I had to have a temporary stent put in.Found out that one of the major side effects of Topomax is kidney problems, specifically stones. So anyone out there thinking about going on this drug make sure you watch yourself for any indication of a kidney problem.Once my doctor took me off the Topomax I was fine and haven’t had a problem since!Thanks for the site-it’s nice to hear from other folks with my problems.

  • i have taken topamax almost 1 year . i had a bad reaction when i had to go to the 100mg Migranes. I started a new job and it all seemed way to much i could not concentrate at all and had to leave the job ! SO i stayed on only 50 mg for last 6 months . now i am finding my hair getting thinner and thinner and i called it is a slight side effect ! plus my birth control had that side effect . but I was on the new birth control a month so i know the topax also thinned my hair.I remember thinking my hair is falling out seems thinner then when i took the new birth control wow my hair stoped growing and the two meds my hair is too thin ! I asked a friend on topax she said yes her hair falls out she trimms it up ? so look out does anyone els have this ?? im getting off it or im gonna be bald !!!!!!!!!!!! help

  • I have Cluster Headaches chronic 2-3 a day I,am on Depakote 2500mgs Verapamil 720 mgs Wellbutrin 300mgs Buspirone 30mgs I take per day now trying Topamax in the mix starting at 25 work up to 100 mgs a day.Been on Topamax one week at 25 mgs no side effects yet. Great site let you known at 75mgs what’s happening

  • I have been on Topamax for about 3 years. I couldn’t tell I was on anything except at first my headaches went away. But they continued and I didn’t realize until recently “why am I still taking this”, I still have daily headaches. It wasn’t until my Dr. put me on Provigil that ppl started noticing that I had changed and I didn’t realize it until my daughter was hospitalized for 10 days and I didn’t have my meds. I don’t know how I was functioning. The Provigil made me crazy, I wasn’t myself. On Topamax I did not loose weight or anything, 100mg twice daily. I had headaches with my meds and now headaches without. It is expensive. I have not compared if Provigil and Topamax work against each other yet. At first I would have to give Topamax 2 thumbs up b/c my headaches did stop. I do feel better now not taking anything, don’t know forsure if it’s being off Topamax or Provigil, I believe being off Provigil.

  • I read your page and wanted to encourage you to try topamax again. I started taking topamax for my migrane headaches and had the same feelings for the first couple weeks, but as treatment went on the feelings went away. The only sind affects I feel now after three months are that of appetite supression and numbness in my hands at times. Like many medications, the side effects are intense in the beginning, but they lessen and even end when your body adjusts to the medication. I have not had one headache and I have lost 11 pounds unintentionally since I’ve been on topamax.

  • I wanted to tell you all that is Vitamin C which is the thing which helps with the Tingling sensations side effect one gets on TOpamax. My neurologist suggested it when he first gave me Topamax and I di get that side effect immediately as the first one noticeaable and the Vitamin C,1000 mg, if taken at the same time gets rid of it within twenty minutes. However, some of my other side effects have been rather gruesome indeed and after about a year I fear I am having more new ones. The earlier ones included depression. I eas basicall okay until I was above 75 mg per day but every time they attempted to raise the daily amount of Topamax to 100 mg daily I would becaome a crying machine.THey gave me an entire Mg of Prednisone intravenously in an attempt to deal with the side effects of the depression in order to to get me up to about 200 mg daily but I oly became more and more depresed until I, to, became suicidal and took myself off the medication. I certainly keeps the headaches away but turned me into a person so depressive that like others, I did recognize myself, and my boss said I had no affect at all.Eventually, I decided to go see a phsciatrist to get pression drugs in an attempt to counter the sideeffects so I could take the Topamax and am again on 200 mg for the pasat six months but this past week have found myself in the emergency room with chest pain twice with all of their findings being negative I am now wondering if this too can be a side effect of the TOpamax??Any theories??Alyce

    PS No Migraines but whoa these side effects are the pits!

  • I am currently on Zoloft for anxiety and bulimia. Unfortunatley, I have gained 15 pounds. Has Topomax been helpful fo bulimia?

  • I have been taking Topamax for about 18 months now. My Dr. perscribed 100mg a day for migraines. I have suffered with Migraines for years, some lasting for as long as 12 days. My Dr. never told me any of the side effects that came with taking Topamax, not even that you had to drink alot of water while taking this med. I have had hair loss, weight loss, memory problems, fatigue, kidney stones, bladder pain and infections, depression, morbid thoughts of death, insomnia, headaches,trouble focusing on everyday tasks, stomach problems, vision problems, loss of balance, and I could go on and on. When I would tell my Dr. he would say be patient, give the meds time to get into your system and work. Other times he would deny that the Topamax was the problem. It wasn’t until last month when I spent 7 hours in the ER with Kidney stones in the worst pain of my life the I began to do research on Topamax and found out all the side effects that taking this drug can cause. Whats worse is the side effects that I was experiencing were listed as the “more common” side effects on the Topamax website! After futher research I came across this forum and although I am sorry that others have had problems with taking it as well I am at the same time thrilled to know that I am not crazy. That all of these symptoms are not just in my head and that they are being cause by this drug! I only hope that after I get off this med that I dont have permenant damage to my kidneys and bladder.

  • I visited a shrink today hoping to be prescibed Topomax instead of the Valpro he had put me on 7 years ago for my Bipolar Disease. I had heard of the weight loss benefits of Topomax and was sick of weighing over 100lbs instead of 60lbs.

    Two things changed my mind about Topomax: a) The cost. 60 tablets cost as much as 400 tablets of Valpro or Epilim.b) 25 days ago I started a diet called Weight Loss 4 Idiots which promised a loss of 9lbs every 11 days of eating 4 specially designed meals a day. And then having 3 days of eating what I wanted.

    The diet worked brilliantly. I lost the 9lbs as promised without feeling hungry. Tomorrow, I weigh myself after the end of the second 11 days. Already my clothes are looser. I feel fantastic.

    The shrink said that the best way to prevent weight from stacking on once I’d reached my ideal weight for age (60) and height (5’2″) was to exercise more than I do now. So I’ll take the dog for a leisurely half hour walk where she pauses for sniffs, plus taking a brisk walk by myself. I might also re-learn to ride a bike. Whover said that riding a bike was something you never forget was wrong.

  • I was prescribed Topamax by my neurologist for my pseudotumor condition to lesson the headaches. I have been slowly working my way up to 200mg/day and am currently at 100. I am also taking Diamox. The tingling that I get with the Diamox is intensified with the Topamax to the point that I just can’t stand it. Not to mention that I feel as if I am walking in a fog all day. I have a stressful job that requires me to multi-task and my staff and my employers think that I have lost my mind. I feel like I have. At the advice of my neurologist, I am quitting. Cold turkey. My sex drive has completely died, I have learned from my gyno that I will no longer be allowed to use hormonal birth control if I choose to stay on Topamax, I feel absolutely dead to the world and find myself becoming less focused. If I have to undergo periodic spinal taps to relieve the pressure in my head, I’ll do it. As long as I can feel like myself again.

  • My doctor prescribed Topamax for weight loss. I have been on 100 mg for just over 2 weeks now and am losing tons of hair! I have severe tingling in my arms and legs and my brain just does not function. Finding words is just an impossibility for me at this point. Additionally, I am feeling really sad. I could not figure out why all of these things were happening to me and I did not associate them with the medication. I was not aware that any of these things were side effects of the Topamax until I found this web site today. I am so grateful that you all wrote in about your experiences. I am stopping my meds right now. This is so not worth it. There has got to be a better way. Thanks Mark.

  • Hey Mark. I’m 14 years old, and I take topamax for depression. I don’t have seizures or migranes, I’m just unhappy. I feel that extreme focus you explained often. Unfortunatly, I’m wicked overweight, and I don’t feel like topamax has made me lose anything. After researching the drug online, I’ve been reading about people losing a lot of weight, and I don’t know why it isn’t happening to me. I still have a total interest in food, and sexual thoughts haven’t left me. I started my dose with one 25mg pill a day, and now I’m up to six pills everyday. Am I going to die, or just finally lose some fat? (i have been feeling really thirsty, though)

  • I’m starting to wonder if my psych put me on for depression or weight. you mentioned how you had morbid thoughts, on topamax. I have them too, with or without… so hmmm.

  • My 22 yr. old daughter has been on 100mg of topamax for about 8 months now. She is having extreme hair loss and is very depressed because of it. I have been reading all the comments and the one thing I haven’t heard is does the hair grow back after you stop taking this drug? I need to know this as well as if it does come back how long does it take?

  • My 22 yr. old daughter has been on 100mg of topamax for about 8 months now. She is having extreme hair loss and is very depressed because of it. I have been reading all the comments and the one thing I haven’t heard is does the hair grow back after you stop taking this drug? I need to know this as well as if it does come back how long does it take?

  • I took topamax for a year and a half. After four months I started to experience severe hair loss but none of the 7 doctors I was seeing thought it was this drug and told me to continue with it for my migraines. While I had no migraines during the time I used this drug my taste buds were altered and I suffered from chronic sinusitis that I was told is “no problem” but it would not go away no matter how I was treated for it. My feet and hands tingled and short term memory very affected. I went off topamax cold turkey from 100mg/day and all I can say after almost 2 weeks is my sinuses are better, the ringing in my ears has ceased, my sever GI problems and constant stomach pain has gone away but the hair continues to fall out despite massive use of vitamins and supplements for the past 9 months. If I had it to do over I would never have taken this drug and just dealt with my migraines as they came, severe as they were. The side effects of this drug have devastated my life and a woman losing hair is the worst indignity. Shame on the drug reps and drug company for not disclosing these side effects and allowing people to experience severe damage to their bodies all for profit.

  • I took topamax for almost 2 years and I was more depressed than I have ever been in my life. I even started to take anti-depressants, which didnt seem to help. I experienced extreme weight loss (far from 3%, a 40 pound drop in 2 months) and hair loss. At only 17 these were all side effects I worried about, but my doctor didnt seem phased at all. After coming off of it, I didnt have headaches anymore but more importantly I wasnt as depressed, but I havent gotten any of my hair back…

  • I have been taking 100 mg. of Topamax since Dec. 4, 2006. On December 24, 2006, I developed a cold and was left with a sinus infection. Now, 3 1/2 months later, I still have it. After four rounds of antibiotics, and five Doctors later, I was just told sinusitis is a side effect of Topamax. My Dr. wants to take me off it, and I’m ready to try anything. Has anyone else had this experience?Jean

  • Ok, I did not read all of them, but I read alot. To the Lady Doctor a year or so ago, my doctor perscribes all of my medications so he knows all that is in my system. I don’t drink, he knows I chew nicotene gum, etc.My Pharmacist also fills all of my presciptions and I asked specially about interactions of Topamax with the pain killers and muscle relaxers and such I am taking. So, I think its unfair to assume people are having reactions because they are misusing the product.Since the day I started taking Topamax my body has reacted in the extreme. My lips get dumb and draw down (whats that? for whever asked about facial dumbness). Also, dumbness in hands and feet and arms and legs has increased. I have increased pain in other areas (for which I take all those other medications which I don’t understand at all). I’ve thought for the past week that I’ve had the flu, but right now I’m certainly questioning whether or not I have the flu or its a side affect. My Dr. prescribed Topamax about a month ago and I took it for 3 or 4 days after the script was filled I had to make an appointment in the middle of the month to see him again. So, I basically stopped taking it initially after the first 3 or 4 days and then recently, about a week ago started taking it again. To date, this time, I’ve had diarhea nearly everyday, my stomach is in uproar and I don’t know about you, but when my stomach is upset and empty, it feels worse to me than when it is full, so, so far, no weight loss cause I tend to eat when my tummy hurts, even if its just crackers and warm milk. I’ve had head aches everyday, not migrains, just headaches. Its better now, but the first few days of taking Topamax were otherworldly. I didn’t feel I should be driving and I had to cause it was my daughter’s Bridal Shower last Sat. and I had dentist appiontments and doctors appointments.The first time I took it I found the lining in my nose thinned and there was a lot of bleeding and crusting, this second time there is still thinning, but much less bleeding. The headaches are in the area of the forehead and near the eyes which is of some concern with what I’ve read on the Topamax site. But so far, no blurriness. If you experience blurry vision with Topamax seek medical attention is what I’ve read.

    During the first experience (a whole 3 or 4 days) I actually understood for the first time in my life how someone could commit suicide. I was in that much pain. I am 50 years and I have never understood the point of suicide and for a brief moment I knew if I felt the way I did then everyday of my life that I would not last long. Perhaps my Doctor gave me too high a dose, 100 mg. Perhaps my other meds were reacting badly with it– but both my doctor and pharmicist claim they are fine to take together. I don’t know. What I do know is that this is obviously a drug that needs to be depensed far more carefully than it is just by reading the comments from the people here and from my own experience. I’m still uncertain if I’ll continue to take Topamax. I don’t know how long I can deal with the side effects, I’m drinking bottles of pepto and not taking my pain pills for fear of interactions that I’ve been told aren’t there. Now, I’ve been taking those same pain pills and muscle relaxers for anywhere from 6 yrs to 6 months without any problems so it seems to me the new kid on the block is the problem.

    My doctor prescriped Topamax for neuropathy and weightloss. So far, it hardly seems worth it lol.

  • Can anyone recommend a Doctor in Orange County or Los Angeles, CA? I want to try Topomax to help me with my alcoholism, and then after some sobriety switch to something like Campral with less side effects. My weight is also a huge issue as a result of excess calories from drinking, so that would be a side benefit. Primary need is to stop my destructive pattern (have been to rehab twice, AA, support groups, but keep rebounding). Thanks.

  • Update–things aren’t much different than last week. I noticed the comment about the price of loss and I admit that was my goal, but I never would have been approved for the med if I didn’t have nerve pain for which it was approved. And, I repeat, I’ve lost nothing. Although, it appears now that I can’t go off cold turkey without suffering consequences and its too close to my daughters wedding to do that right now. I’ll talk to my doctor about cutting back the dosage later this month and hope the side effects abate and the headaches chill.

    The fogginess seems to be less with longer use. But apparently if your stomach can’t deal with sulfa drugs then no amount of remedies are going to calm it down. You would think the sheer amount of diarhea would cause weitght loss but I also seem to be bloating. I’m torn between drinking the water I need to avoid kidney problems and packing on more water weight just to have it slosh around an already uncomfortably full belly and intestine. Anyone else have this particular problem with this drug? Maybe I should just put some lemons in my water and stay away from salt for the next 3 weeks and pray things go well until after the wedding.

    I’ve expereinced “cold turkey” going off meds without doctor supervision and control a couple of times since I’ve been disabled and both times I spent a few weeks in bed miserable because of my foolishness and haste.

  • I’ve been on Topamax for about 3 months, taking in stages of increments of increasing levels. Since I’ve started, I’ve had the worst sinus infection ever. I’ve seen 3 doctors plus a specialist. The specialist after all visits, finally gave me an over the counter medication, Neil Sinus Med which is good but no cure. I’m literally in agony. I’m convinced it’s the Topamax. I’m ready for an X-ray, surgery, or any other remedy they have available. I would tell your doctor that if you are feeling any of the symptoms I have indicated above, that this is no joke!

  • Hi, I have been on topamax for 5 days now I’m on 25mg and my medication goes up every 2 weeks. I am beeing treated for bipolar. I have found that topamx calms me dowm alot, because I have really terrible mood swings.I have found the side effects difficult so far, topamax makes me very sleepy.I have to go to bed straight after I have taken my dosage. I can feel that I have a change in my appitite and nothing tastes the same all my tastes are completly different. I also found that I am a little for argumentitave but hoping that will go away. I hate the sickness I have and hoping that topamax will help me keep control of it. but so far, I feel numb. I kinda feel like I dont have emotions. which at the moment I think is a good thing. less people get hurt. but I am battling a bit with the side effects cause I already have a consentration problem and a terrible memory and this is going to make it worse. well anyway. we’ll see how it goes.

  • I’m on 600 mgs of Topamax daily for epilepsy and migraines, and it’s been a godsend for me. I have had no side-effects and no problems with it. It has been the only thing that has helped me and controlled my seizures and has prevented the severe migraines that have attacked me since age 8 yrs. I’m sorry you had such a hard time with it, but, I don’t think weight loss is really what it’s for is it? I mean, yes, I think it’s a huge benefit (hey, as a vain female I love that one side-effect that I take back my above statement , I do have) but, it’s no reason to take a drug like Topamax.

  • I’m on 600 mgs of Topamax daily for epilepsy and migraines, and it’s been a godsend for me. I have had no side-effects and no problems with it. It has been the only thing that has helped me and controlled my seizures and has prevented the severe migraines that have attacked me since age 8 yrs. I’m sorry you had such a hard time with it, but, I don’t think weight loss is really what it’s for is it? I mean, yes, I think it’s a huge benefit (hey, as a vain female I love that one side-effect that I take back my above statement , I do have) but, it’s no reason to take a drug like Topamax.

  • I recently have been prescribed Topamax by my doctor for weight Loss. My doctor is a highly recommended weight loss doctor with high results. And yes for all you that keep saying Topamax is not for weight loss well welcome to 2007! Topamax is now being prescribed for weight loss and weight loss only. Although I have Hypothyroism and can’t seem to loose one pound no matter what I do because my metabolism is so slow. I have been on Topamax now for one week and I have actually lost 1 pound wow what a miracle. I also have fibromyalgia and didn’t even realize that this past week that I haven’t been having pain. It just dawned on me it must be the Topamax that I am taking. Topamax is also good for post traumatic syndrome in which I am also going through. A very close family member was just recently murdered. If I had to rank in order I would say that Topamax first has helped my pain from fibromyalgia then has curbed my appetite and thirdly helped with post traumatic syndrome. My doctor has started me on 25mg and increased it to 50mg this week and plans to increase it to 75mg total. Remember this was for weight loss only. My appetite is no longer the same, I am not hungry like I use to be, soda pop doesn’t taste the same however sugar taste like sugar and food tastes like food I am just not hungry like I use to be. I do have a strange headache in the center of my forehead and kind of tired. If I loose weight and I am no longer in pain I think it is well worth it. I have tried to loose weight for 3 years and nothing has worked.

  • I have been taking Topamax for migranes for over a year now. I have gained 20 pounds. I have gained depression due to my in ability to drink soda because it now tastes like dust, caffeine made me happy. I could sleep all day if someone let me. I thought that all the wierd side effects were over after 4 months, I’m now discovering I was wrong. My eyes now do this wierd vibraiting, twitching, thing. All of you out there that are taking this to lose weight I beg of you to chose another way, or embrase your squish and love every bit of yourselves. This drug, these side effects, are all part of my genetics and poor choices made by a dumb kid with drugs. I have to go through this you don’t. Your weight loss will stop and you will gain it back. Like I said, I GAINED 20 pounds.

  • I am tapering off T-max after being on it for 10 months for migraine treatment. It is the best thing I have done! Although my migraines were less often, they were more intense, especially during my period (which was disappearing). My eyes often felt like someone was stabbing them with darning needles. I had a very bad reaction with allergy medication that had my heart rate throug the roof and sent me to Respiratory Therapy. I had unexplainable crying jags, couldn’t read a book or a newspaper article, or focus on my computer. Could not recall names. I totally relate to Mark’s feeling of “not being himself”. I often looked in the mirror and didn’t like or recognize my reflection. Hard to put into words. I noticed the muscles in my face getting “tighter”. I hated myself in my body and was having thoughts of suicide. I never lost an ounce and started to gain weight although I think it was mostly fluid retention. I used to enjoy the odd glass of wine, and now would smell and taste like crank case oil. My counsellor said that emotionally I would go off like a “Roman candle” which wasn’t like me either. All this and I still had headaches! So why be on the stuff???

    I will be completely off T-max by Saturday and have been starting Effexor with great effect… and a 5 lb weight loss. (probably the fluid retention from the T-max withdrawal but I’ll take it). I notice that some people have great effect, but if it is not the drug for you, then speak to your doctor or find a doctor that will listen to you. Your mental health is as important as your physical health.

  • Hi,Just wanted to say that I too am taking Topamax and have been for years. It’s important to drink plenty of water. If you don’t you will experience tingling in your fingers and toes. I suffered from severe migraines and Topamax has helped me tremendously. I had been in the bed for days at a time unable to function until the Topamax. I take the maximum dosage 200mg everyday. But it works for me, I did experience weight loss in the beginning, but I have leveled off and so has the lathargic feeling. I have never had the morbid thoughts you experienced possibly because I was so relieved to have the headaches gone. There is nothing like having your life stolen from you by a headache for days on end. Topamax gave mine back to me. I do however agree that I can focus better while on Topamax. I have always had a problem with putting first things first. Topamax has solved that for me but I hadn’t realized it until I read your blog. I think it’s like anything else,it depends on the person, their chemical make up and their needs. Good luck to all of you in your endeavors.

    God Bless.

  • Topamax was once a God send that ended up giving me the worst nightmares of my life.I was prescribed Topamax for severe migraines in 2003 by my Neurologist. This stuff worked right away, for 9 months I did not have a single migraine, I lost a few pounds, but then I noticed I was not happy. I was avoiding people and started becoming angry and depressed for no reason. The final straw came one day when I got out of my car one day to start yelling at a woman in a parking lot for taking the parking spot I had been waiting for. That was not me, I don’t know who I was at that point! Went off Topamax and the migraines came back full swing. Enter April 2006, by now I am having injections into my skull to relieve migraine pain. I asked my Neurologist if we could try Topamax again, I was that miserable! This time though, we tried anti-depressants with the Topamax, hoping that would keep the anger and depression away. Fast forward 3 months and I was worse than the first Topamax episode. This time I became so angry that I told my best friend I wanted to beat my kids father’s head in with a baseball bat and I could plead insanity because I was on this medication that was making me a mad person. Trust me, if this Guy had done to your child what he had done to mine, you would have felt the same way. 15 minutes after that conversation I was calm again, upset still, but calm. I already knew it was time to ween myself off of this drug, again. But apparently I had scared my best friend so badly she wanted me to talk to a shrink, so I went with her, we were late to the appointment and the Dr refused to see us. I didn’t care, but she was adament and drove me to speak to another Dr nearby at a hospital. Suddenly I am being told that I am on a 72 hour psych hold and this Dr is trying to convince me that I am taking a “mood stabilizer”. I told him I had no idea what the hell he was talking about! He kept trying to get me to sign some document admitting that I was on this “mood stabilizing drug”. Well, it turns out that mood stabilizing drug he was talking about was Topamax. Unbeknownst to me (and most of America) Topamax was being given to psych patients as a mood enhancer. I laughed at this Dr and told him they had the wrong idea, to call my Neurologist and get my Medical history and he would realize that they had made an error and I was not a psych patient and never had been. I was taking Topamax for migraines, I also let him know that I am a well educated person and I actually READ the FDA pamphlets that come with the drugs I am prescribed, so I am very aware that Topamax is only FDA approved for Epileptic seizures and migraines, not for any mood crap. Then he asked me about the anti-depressants, so I had to explain myself there as well, giving him that whole history. That Dr never bothered to call my Neurologist! I was kept in this God Forsaken hospital for a WEEK before I had a review and a judge released me! I lost credibility in my job as they knew what hospital I was in, my Daughter’s father told her that I was in a nut house for threatening to kill him, he tried to ruin my relationship with my Daughter. The day I got out of that hospital I decided I did not care how long it took me, I was going to find out what was causing those migraines so I would NEVER be in that position again. It took 9 weeks of being out on sick leave from work, but I got my answer. I have a micro-adenoma in my pituitary gland and I am now in treatment. Here is the sickest part of all, that Hospital is now trying to sue me to collect money for psych treatment that was already deemed unnecessary…..all because they did not call my Neurologist for my Medical history. Topamax has been the worst experience of my entire life and that’s saying something when you have been diagnosed with a brain tumor!

  • Gina- Update I’ve now been on Topamax almost 4 weeks. I’ve lost about 5-6 pounds which is really good for me since I have a metabolism of zero. The carbonated beverages are starting to taste good again. I think my body is adjusting to the dose I’m on. The upset stomach has went away and I am doing great. I think the key is finding the correct dose and not to increase your dose too quickly. Things couldn’t be better. I sleep great at night, I no longer wake up several times to eat. My binge eating is under control. For everyone who is going through multiple side effects if you give your body enough time to adjust to the dose the side effects should go away. Hang in there.

  • I’ve been on Topamax for 5 years, after Depakote and who knows what else. I take it to cover massive migraines, Bipolar and severe manic depressive. I had major hair loss in the beginning but that has stopped. I lost my appetite, lost my short term memory, and my ability to focus. I have my appetite back, weight is the same, but still have a hard time picking words out of the sky. I talk in circles and it kills me. I notice when I forget to take it, my migraines come back like a freight train and put me in tears! I do have less strength in my hands and found someone had said that. I never knew where that came from. I’m tired alot. My sence of smell has REALLY increased and my taste has diminished. I have lost the excitement I used to have, I don’t smile anymore. I wonder if this is due to Topamax and it’s numbing nature, or if I’ve been on it so long I need to up my dose? Not sure. Nothing else worked so I don’t want to change again. I have bad reactions to side affects and I’m tired of being sick. I really thank everyones information. It helps decifer whether it may be this medication or something else going on. I’d like to have children and wonder if I would have to stop taking it. That would be detrimental but not sure how harmful to a fetus it is. Thanks for the site. Take care.

  • Mark, I was taking Topamax for Migraines (basilar migraines, common migraines & hemiplegic migraines)…it improved my common migraines & made everything worse.

    When I was on it, I experienced these side effects: loss of appetite & weight loss (not good for me as I’m small to begin with), extreme sluggishness, continuously falling asleep during the day, increased problems with my ataxia/gaite, hand tremors, anxiety, disrupted my nighttime sleep more (was already bad), paresthesia, confusion, increased memory problems to the point I couldn’t remember from one minute to the next, difficulty with long term memory, lost skills I learned w/in past yr or so, increased hypnogogic hallucinations, etc. Oh, it made my basilar headaches worse & really long (2-3 weeks) & increased my hemiplegic migraines.

    Now that I’m off of it (for 2 months), I still have:paresthesia, weird sensations in my limbs,weird tastes/smells, increased sudden headaches, stiffening/clenching of limbs & soreness in my hand when I wake up, my morning migraines got worse, fortunately my basilar migraines & hemiplegic migraines got a little better. I still have problems with short term memory, increased difficulty with spelling & dysgraphia (writing disability), but improved long term memory. My doctors think, based on my EEG & MRI & symptoms, that somehow I have a partial seizure disorder & neurologically atypical that was somehow triggered much, much worse due to my Topamax experience. I’m not sure if I quite understand it.

    I am still unemployed & having difficulty focusing on my job search.

    Granted, some people find Topamax works great, but it was horrible for me. Considering the possible intense side effects in some people, I am surprised your doctor (& other doctors) continue to prescribe it for weight loss. Even though you say you had no problems before, you could be “neurologically atypical” and not know it…after all, you do make tarot cards & fantasy art, don’t you (which is a good thing)? ;-P Many people who have addiction (food or otherwise) issues have underlying issues that pop out if that addiction stimuli is removed…I used to work as a substance abuse counselor & have seen people who seem to have no psychiatric/neurological/behavioral/medical issues all of the sudden have major stuff once they tackle their addictions.

    I think it’s really important that Pfizer is aware of all these possibilities, so they can be aware how it affects some people & try to be more judicious in who should be taking this med.

  • When I was on Topamax I also experienced:-increased sensitivity to smell-increased impulsivity (spending money/actions)-increased obsessive thinking-severe IBS/constipation (doctor forgot to tell me it has lactose)-kidney stones (able to flush them away)-decreased focus (bad to begin with)-increased distractability-increased dry eye-more difficulty with driving

    Does anyone have AD/HD and Basilar Migraines with partial seizures or mild cerebral palsy? I’m just wondering if adverse affects have anything to do with having a different neurological system.

  • Hello there fellow topamax users!I’m ‘shocked and stunned’ at discovering this site dedicated to sharing peoples experiences with topamax.I have been on this medication for 7 years for seizure disorder (a fancy name for epilepsy).I have nearly every type of seizure you can shake a stick at. The doctors started me on depakote when I was 10 but my hair started falling out at the age of 30 (slightly unfortunate for a jazz singer) so they switched me to topamax. The first 3 months were terrifying! My speech suffered and I couldn’t remember how to play the piano ( since I’m a jazz pianist that too was unfortunate). But to those just starting out, I say “Do not give up because in time it does get better!”. After a month I was at large playing (piano) and singing again in Chicago. My hair is long and luscious! At present I am attending university in New Zealand and pursuing a BBS with a major in marketing. This year I got A’s!!Occassionally I forget things (like my phone number, or what I’m supposed to be getting when I’m at the store!) but that’s part of life. A russian hitman once threatened to kill me when I had a gig in Cambodia and I survived that. So I guess the question on everybody’s minds is which is worse… Topamax or our condition?Currently I take 250mg of topamax daily. I also take ani-oxidants(coenzyme Q10 etc) and magnesium .Anti-oxidants hunt down free-radicals and topimax can increase the toxicity in your body quite considerably. Taurine can also be helpful as a neurotransmitter. By taking taurine you may not need to take as much seizure medication . It is available from healthfood stores. I would advise doing kidney cleanses every few years though (even if you aren’t on topamax!) Ha ha!Be knowledgeable… be powerful!

  • Has anyone had fairly severe and continuous hair loss with Topamax, particularly after taking it for a number of years? I have been on 150mg of Topamax for 4 years for chronic migraines – was a godsend at first. However, for the past 13 months, I have had continuous hair loss. The neurologist doubts this could be Topamax as it started so long after beginning the medication. I am on other drugs but Topamax looks to be the most suspect for this. Not many people on this site seem to be referring to hair loss. Am wondering if this is a Topamax problem and am pretty much ready to go off just to find out. This is a great site.

  • been 6 months my hair is still not growing back since I stopped 100 mg topamax . Plus the birth control I was on then stopped hair growth. I saw dermotoloist she tested blood said im ok but it could take 1 year for hair to grow I should be ok . Topamx is bad stuff I have my mind back and can think clear take a close look at your personality while on topamax . It took a year /job 4.00 hr away from my life it is bad stuff for some people hair loss was bad i have thin hair now pray I get growth again ?

  • HAIR LOSS, I have been on Topamax for migrianes for over 1 year (100mg) and the side effects have gone away at each dose adjustment (even the sexual stuff ladies, just move your butt more at the gym it helps). But my hair has been falling out. I have a lot of hair and I didnt think too much of it at first, I have had periods of shedding before but one day my hair dresser said something about how it was getting thinner and then when I put it in a ponytail I realized OMG. I went to my doctor and she said, I doubt it let me run some tests, to check for other stuff (diseases) they were all fine. I went to my neurologist, he said I doubt it and I dont think you should come off of this. SO NOW WHAT, its still falling out…HELP PLEASE!!!!!! I AM ONLY 32 and I dont want to be bald, could it be the topamax (this site makes me think so, what can i do to help, what should i do)????

  • Let me start out by saying I was on Topamax for two years and remember a combined total of one week of those years. I am not going to say this drug is horrible or I suffered greatly. Fortunately, I do not have seizures unlike many of the commenter’s on this page; in which I wish you all the best. No, I was not trying to lose weight. I weighed 125 and was 19 years old. I was diagnosed with essential tremors and persistent migraines. Basically, shaking hands and headaches. Except the hand shaking made me spill food, drinks, write horrible, look like a fool, and type inconsistently. Which is all unfortunate, since I was a teenager in computer engineering 🙁 I moved away against my parents wish to go to a different school and moved in with a couple of friends from 1st grade and high school. (The reason for the excess description is for the validity of the subject). To which they can attest on many occasions I would sit in my room with the lights out and never come out unless I had to be at work. Now this was still summer so now class had began. I was not working much at all to begin with because I was a student. 4 days a week maybe. 5 hours a day. I was a smoker too might I add. No girlfriend. Prior to the Topamax I was quite the partier. Yes, I was a smart student and I happened to be the bastard that you hated that could go out on the week night on a school night and party with my friends in high school and still graduate with honors. I’m not bragging about anything just laying a foundation. But while I was away to go to college on topamax I would stay in my room for days and not come out. I can not layout a full day for you to save my life for either of those two years. My two best friends who know me better then any one call those years my dark years jokingly. As to mark making the remark about recalling the fantasy… let me say its true. I was “hard” once. And the only way was because I finally realized how out of it I was to which I could not even get aroused so I went off topamax for a week and my “fun” and went back on it. The reason I went back on…. Ill be honest I have never thought and meditated and wrote so much in my life. I can honestly say I enjoyed it to some extent. It was enlightening. But it was a fluke. It is a rare side effect. Not all people experience sexual side effects as well as clinical depression. My next doctors appt. was a little different then the previous. My weight had dropped to 109 pounds and I had become clinically depressed with suicidal tendencies (after being referred to another dr.). So needless to say I went off the topamax. Now, I am 22, hanging out with my friends, have a wonderful girlfriend, back up to 125 lbs. (for some reason I can never can gain any weight, the neurologist says it’s a fast metabolism.), and as for my headaches I still have them but not as often but when I do I take maxalt. And for the tremors instead of topamax I was told to suck it up and drink some wine; literally, (the reason being: I am too young to have benzodiazepines which is a barbiturate, in turn has the same effect as alcohol.) All in all, topamax can help many things but it has some crazy side effects if you take it be careful.

  • I also just want to add that my dose was fairly excsessive for tremors, so that could be aslo why I was locking myself in my room. And other side effects I underwent included: forgetfulness, being scattered brained, face tingling, LOW TOLERANCE TO ALCOHOL!!!!!, lack of motivation, loss of appetite, loss of sleep at night, drowsiness during day, disassociation from peers and co workers, desire to read and listen to music (maybe that was just me), desire to take notes as reminder, irritable towards random actions of peers and i hated to be around any form of media tv, radio, newspaper, or even go out in public.

    50MG qAM100MG QPM

  • I have been on topamax for 2 months, just up to 100 MG. I am loosing my hearing, have blurred vision, still have headaches and have been told that they might be permanent. Lets just say I am not impressed. Not to mention all the other BS side affect, nausea, stomach pains, loss of appetite, Mental changes, confusion, Giving me ADD and cutting my IQ from 145 to 80, aphasia, headache, depression, too many to mention. I hate the stuff and am tapering off now.

  • Wow! This website has helped me a lot. I have an 8 year old son who was put on Topamax last February. In June his neurologist increased his dosage to 200 mg a day. His behavior is horrible! This once sweet, happy boy is now aggressive (to the point of hitting and kicking me and throwing things) and anti=social. He has lost all enthusiasm for school and acts as though he is drunk. He babbles to himself and starts laughing and laughing at nothing at all. Unfortunately he does have a severe speech disability and this medication has made it even worse. He has lost his word recall and has even lost a lot of his ability to read. I am so thankful I ran across this website because I keep telling people (including his doctor) what this medication has done to him, and no one (not even his doctor) believes me. Thank you all for your messages.

  • If there is anyone out there who has a severly disabled child who has been put on Topamax PLEASE BEWARE! My son who’s 11 years old and has cerebral palsy, has been on Topamax for 2 years. In those 2 years we have watched him literally wither away. He refuses to eat most days and it’s a struggle to get him to drink. He has lost so much weight that he looks like a skeleton and is now waiting for a feeding tube to be surgically placed. Because my son cannot communicate how he is feeling it has taken me a long time to work out that it is Topamax that has done this to him, and reading all of the other stories about what Topamax has done to other people i am truly appalled as to the agonies i may have put my son through. At the end of the day whilst it has controlled my sons seizures it is not the only anti-convulsant on the market and i shall be fighting my sons corner to get him off of the stuff and try something else. I am not saying that this is the case for every child, but parents should be made more aware of this side effect especially when a child cannot speak for themselves.

    I’d like to say a big thank you to everybody who has written on here and shared their experiences good & bad. It has truly helped me have courage in my own convictions. Topamax can be a life-saver for some people, but can have truly evil effects on others.

    FROM A VERY STRESSED MUM

  • I started out on Lyrica & was put on Topamax for weight gain and other bad side effects. I was taking both meds at once during the switch. I was on 200mgs a day of Topamax. It had me going to the bathroom a lot & I thought it was just the extra fluid in my body from the Lyrica being removed. I told my neuro about this & the many other side effects (speech problems – vision problems – lack of concentration & creativity – pins&needles sensation – & one heck of a bad temper even at dead loved ones & more). So he cut me back to 150mg. The need to keep going to the bathroom got worse & I went to a doctor who told me it was acute cystitis, but now he thinks it could be a caved in bladder. I’ve been on antibiotics for 20 days now & they still don’t know exactly what’s wrong. Has anyone had bladder problems while taking the med?

  • Hello everyone!I am a psychiatric RN and have been for 5 yrs (10 total). I work closely with a psychiatrist who favors topamax for treatment of bipolar and sleep disturbances. For treatment of these issues it is quite efficacious. I suffer from horrible migraines and am overweight. I have taken topamax on two occasions for 3-6 months each time hoping the migraines would cease and I might lose some weight. I suffered the “dopamax” side effect, not really knowing what was going on around me. My ability to concentrate was nonexistant. I couldn’t have an orgasm to save my life. I had the awful tingling in my fingers and toes. I have to say the worst and scariest side effect was the hair loss!!!! I had no idea that hair loss was a fairly common side effect. I attributed it to stress, pulling my hair taughtly, you name it I thought of it as an excuse. I never thought it could be the topamax until I began researching it and discovered it was actually quite common. I did have fewer headaches during the time on the medication but I don’t believe the benefits outweigh the risks. I loved my beautiful thick hair. I am patiently awaiting it’s return!! I hear it is reversible. Thank you for listening. For all of you that have had good results treating bipolar and depression GOOD FOR YOU!!!! That is great. I just thought I would share my experience.

  • THANK GOD I found this site! I thought I was going crazy! I have always been someone who has loved and appreciated the little things in life. Then about a month ago, I was put on 25 mg of Topamax for migraines, and like so many of you, I have become a shell of who I was. I care about nothing, have no emotion, and have even developed suicidal ideations. I found that my hair was falling out more than usual, I’ve lost 10 pounds (and was not big to begin with) and can’t concentrate. Originally I was on 50 mg a day, but they cut it down to 25 because I found that I was forgetting where I was, and what side of the road I was driving on. 25 mgs seemed like such a low dose that I didn’t link any of my other symptoms to the Topamax. Especially the mood issues. Instead, I went to a shrink, and began depression meds and anxiety meds. But I tend to be a person who reacts strongly to medications. I am so thankful that there are other people who have become numb and depressed with Topamax. It is giving me hope and making me see that I am not losing my sanity. It is also illustrating that, very clearly, this medication needs to be better described to patients before being prescribed. I wonder if doctors are getting a kickback/bonus for prescribing it?

  • I just found this site and i’m shocked a few things I never new. I started this drug about 4 months ago for fibromyalgia which oddly enough it’s stopped everything after years of nothing working.I was diagnosed with if years ago, but told I had it since I was born.I had no idea that sexual urages were taken away that much . .would explain alot . . .Also I read a few comments and yes the drug is used now by alot of doctors for people that want to loose weight fast.The only problems I have been having on this so far are “blond moment”… I’ll be in the middle of a deep conversation with a person and then have no idea whats going on and what there talking about… something simular is I was watching a tv show on how they make Jiffy peanut butter and I sat down then all of the sudden the show was over, I looked at my cell phone and it was an hour later . . ??where had that hour gone??? I have a feeling my doctor thinks i’m a fruit cake but he says it’s fine.Has anyone ever gotten numbness on this? I’ve noticed if I sit in one spot or stand still for over a half hour I get numb, like a pain numb then total . .just thought I would throw that out there.. dont want to loose a foot or finger…. :)Also I have looked everywhere . .i’m on 100 mg and going up and I can’t find anything about being pregnent on topamax, it says talk to your doctor . .well i’d like to know now rather then go to a doctor that over prices me because he is a specialist.Thanks for reading.

    **** Lisa ***** the hair loss thing, I thought it was stress, I had thick hair til I started this stuff, my new hair dresser said something to me about thin haired people . . .

  • I have been on Topamax for the past 8 months, prescribed by my neurologist. I take it for severe migraines. When I started having 17 out of 30 days in the month with migraine, it was time to try something new. Add to that, I have a 5 year old with autism, makes for a very rough day! I had tried this drug before seeing my neuro from my family doc and he had my taking 25 mg 4/per day and it was a mess. Thank god I found my neuro! Obviously I had my concerns, but I trust my him. I was previously on Elavil (prescribed by my family doc) which made me gain 40 pounds which I was very unhappy about and did nothing for the headaches). I started out at 25 mg/day in the am and am now up to 300 mg/day (100 in the am, 200 at night. I am down to 1 or 2 a month now. I did experience weight loss, but I also went off the Elavil too, which was causing me to gain weight. My neuro also told me to combat any of the brain fog to drink a glass of OJ every day, which I do. I also drink a ton of water which I believe helped the weight loss. The only side effect I have ever experienced with this med was some tingly fingers when I was upping my dose. This med has been a life saver for me with the headaches. I dont believe it is a miracle weight loss pill, I know people who have never lost a pound on it. I see my neuro every 3 months for a checkup and if it ever loses its effectiveness or I reach max dosage (400 mg) then it will be time to try something new. For now, I am counting my blessings!

  • I have been taking Topamax not for almost two months at 100 mg, I began at 25 and worked my way up slowly. Lately I have been noticing that my hair is looking thinner in the front and my scalp feels painful, like I have a bad headache. I am also on wellbutrin for depression.Its hard to concentrate on life when you think your hair if falling out and your scalp is in pain. The weightloss has been a plus with this med, but I don’t wish to be bald. Help!

  • I gained weight on topamax. 20 pounds! I can’t take it off either. I was overweight to begin with and when the doctor prescribed this for me for migraines and depression he said weight loss would be a bonus. Ha! My migraines keep returning an d they keep increasing my dose. I’m at 100 mgs and they tried to put me at 200 mgs and my brain couldn’t handle it. I thought my feet were on the wrong legs and freaked. It was weird. I want to wean off the drug but I’m scared the deperssion will return. So I’m stuck with feeling mellow and stupid and weird all the time, or feeling depressed…the migraiens are there no matter what, and the weight gain is just weird….

  • i was prescribed topamax last year to treat chronic migraine, it initially seemed a lifesaver, seemingly sorting my migraines with few horrible side effects – the most bothersome were the tremors. though reading through all this info now i realise that a lot of how i was acting and feeling was down to it as well, Anyway after 6 mths it stopped working (re migraines) so i came off it. still having major probs with migraines and doc suggested going back on topamax last week. so i did 50 mg a day 25mg am 25mg pm. then had 3 days of hell as i had the worst reaction of my life. extreme loss of appetite – i couldnt even physically chew (previosuly on this drug i had moderate loss of appetite but nothing so bad as this) had vertigo so bad that simply standing up had me throwing up. extreme lethargy to the point of being unable to function at all. migraine – so they didnt work this flipping time for my head!!! palpitations and chest pain, lower back pain and really to sum it up feeling very, very sorry for myself. also very frigthened by the violence of the adverse reaction.

  • I’ve been on Topamax for three months now. I started with 25 mg and did the weekly titration to 25 am, 25 pm, then 25 am, 50 pm and then 50 am and 50 pm. That’s where I am and where I plan to stay.

    It has helped with the frequency and severity of my migraines a great deal. Now when I get them, I can take a 100mg Imitrex and actually function and not even feel sluggish from the Imitrex. It’s almost like I don’t have a headache at all! I’m truly thankful for that and for the fact that I’m getting them less frequently than I was.

    The only side effect I see are tingly fingers if I forget to take my potassium supplement (or eat an extra banana for the day) and cokes taste flat. I do feel like my hair might be getting a bit thinner but my hair stylist didn’t notice anything so I’m not going to worry about it. I’m so thankful to have headache relief that I just can’t worry about that right now. I may start taking Biotin just to see about preventing it…just in case.

    I didn’t have any appetite suppression or weight loss but I don’t have any weight to lose so I’m actually glad about that.

    So I hope that the bad stories don’t deter others from trying out this med. It’s not a bad med. As with any medication, some will react badly, while many will get the proper relief from it. But usually the happy patients don’t scout out message boards to share comments. I happened to come across this one before I had started Topamax while I was researching it. I research pretty much anything before I try it. But I’m very glad I didn’t get scared off because it’s really helped me a great deal.

  • Mark,I stumbled across your site by searching for topamax reviews. I just began Bipolar II treatment with Topamax today. I am currently taking 1,000 mg of Depakote, which is a great mood stabilizer. However, I have gained 20 lbs and I’m constantly overeating. Diabetes runs in my family so I need to control that problem. Self-image is also a target for my depression.This is why I’m starting Topamax.What people need to remember is that because this drug acts like a mood stabilizer for some, it can mess up the moods of others. You probably felt strange while taking it because it targets that area of the brain.I’m very nervous about Topamax giving me memory loss. I’ve heard it’s nickname is Stupamax. When I was suffering from Bipolar, I had serious memory issues and couldn’t focus in school. Hopefully, this drug will have the adverse effect and help me focus even more than I can with Depakote.

  • Just wondering if anyone else is experiencing the bronchitis also? I can’t seem to find any doctors or pharmacists that say it’s an official side effect, so my doctor doesn’t want to take me off it…if anyone has experienced it, does it just happen at the beginning or does it get worse as the dose increases?

  • To answer your question above. I had a very difficult time breathing, or getting air in my lungs. My chest and throat felt conjested. When I went on Reactin for allergies, my lungs really reacted and my heart felt like it was beating out of my chest. Plus my usually normal blood pressure went quite high. I found breathing a laborious behaviour and felt sick often. I also contracted the worst chest cold of my life a few months after the “allergy” reaction. Thought I’d never get over it and I usually don’t get that sick. I’m off Topamax now and glad of it. It was for migaine control. I have now decided to “go natural” and have elminated all the food triggers that I have found to exacerbate the headaches ie. wheat,red meat, milk and milk products except yoghurt, sugar (and no aspartame either), wine, beer, and of course caffine. Since cutting all the above out, I have reduced the amount and severity of my headaches by at least 75%. It is amazing. Oh ya, I’ve also thrown in Yoga and stretches (especially around my upper shoulders and neck). It is amazing to feel this good and be drug free.Oh ya, cutting out the bad foods is also contributing to a weight loss. I have since recovered my ability to focus and can read again. How wonderful. I feel like myself again!

  • For those who have lost hair, I am currently on 600mg for migraines and bipolar disorder. I had a scare recently with the insurance company refusing to renew — but in talking to them and them having the pre-authorization again, it did go through for another year. Still, it gives me pause to try and decrease my amount slowly down to 400mg — though the 600mg has been working. I hate that insurance can have that much power — and that if that weren’t going to be OK, I was allowed to go that high… Oh well… Anyway, I was taking Prilosec in addition to the Topamax. I looked on the internet to see if anyone had hairloss with Priolosec — and sure enough some people did. When I stopped taking it, I stopped losing hair. When I started again, I started losing hair. After I stopped for good, I have stopped losing hair for good. So for me, it is not the Topamax. Perhaps for some of you it could be prilosec as well. Just a thought. Good luck — Losing hair can be a real downer!!!

    Kim

  • I have been on topamax for about 6 months for bipolar, and it has been a wonder drug for me…I can live with the side effects, my husband actually likes me again…I did, and do get very sleepy from it, but now I take provigil to help me think more clearly…And I lost a lot of weight my first month…I don’t like that I can’t drink my Dr. Depper, but I haven’t felt like myself in years!

  • I have been on 100mg of Topamax for about a year for migraines. Why anyone would take something so chalk full of side effects for weight loss i don’t know!! Anyway I thought It was the wonder drug for me. I am 30 and have been looking for help since my teens. Until my hair started to fall out. I am a hair stylist snd this is horrible for me…and every women this would happen to. It does help my migrianes (why can’t I spell that) but at what price. I have been taking 50mg and will try going off the med. But after reading what many of the posts it looks like I will be Brittney Spears a while longer!! I hope one day all of us who suffer so much with these migraines can live a pain free life without having to take meds that make us bald. And ps. I hope my teeth don’t fall out too. Like i said before People who are taking this for just weight loss…DAH!!!

  • I have been on Topamax for almost 3 years now (and believe me when I tell you it took me a good 10 minutes to remember when I started the medicine). I originally started the medication for severe migraines I was having 3-4 times a week. I wish I could say the good has outweighed the bad…but at this juncture, and after again reading so many others’ horrible side affects, it is hard to believe this is a “miracle” drug for anyone.

    Yes, my migraines have subsided considerably. I now am lucky enough to only get a migraine once every 1-2 months, which is AMAZING!! This has made a huge difference in my professional and home life.

    However, every negative side affect I have read from Mark and all of you, I believe I have experienced in some form over the last 3 years:-weight loss (I now am a waify 108 lbs although I lift weights, and food is hardly a concern of mine)-mental confusion/blurriness (this is an everyday occurrence without question, and though it is “funny” sometimes, it is hardly funny to forget your past and not remember important family or work items, dates, stories, etc.)-“dope-a-max”,”stup-a-max” are fitting names, and I consider this a separate issue from the memory loss. Not only do I have long & short term memory loss, but I forget vocabulary words, phrases, and I am not stupid!! It is impossible to feel intelligent on Topamax.-Lethargy is a daily issue one way or the other. I struggle to concentrate on any 1 topic and I constantly feel drowsy at work or at social functions. I am a zombie.-Loss of sexual libido is a huge issue! Not only do I not think about sex, but when I try to think about sex, it is like firing a gun with no ammo. My brain and my sex drive simply feel like they no longer function – and I am a 25 yr-old newlywed!!!-I used to be an EXTREMELY happy, vibrant young lady! I, thankfully, never dealt with BiPolar or Depression issues. But since being on Topamax, nothing makes me TRULY happy, and very little upsets or angers me. My passion for Music and Theatre has dwindled and the phrase “shell of my former self” would accurately describe me.-I experience the numbness, tingling, palpatations, upset stomach, blurry vision, strong sense of smell etc. that everyone has mentioned and I have experienced them since the first month of starting Topamax. They never got better with dosages and have never gone away.-I have asked Doctor after Doctor after Doctor about side affects from Topamax and what they think, and “conveniently” NONE of them ever seem to “know” anything. How can Doctors NOT know about their own drugs? What is most scary about these side affects is that the doctors prescribing the drugs “appear” to have no idea that they even exist…nor do they care.-Worst recently, and my reason for visiting this site: I have seen more doctors in the last month than EVER in my life. I am now looking at a diagnosis of IBS – Irritable Bowel Syndrome AND IC – Interstycial Cystitis (I have 3-5 bowel movements a day, and pee non-stop) and these are both issues I NEVER had before taking Topamax. Not only this, but I am seeing an Orthopaedic Surgeon to discuss potential nerve damage in my left elbow, and tendon damage in my right hip.

    I AM incredibly physically active so these things could be completely unrelated to the Topamax…but after re-reading others’ posts, I am wondering how a perfectly healthy female who before starting Topamax had NO other health problems besides Migraines is now dealing with IBS, IC, nerve damage and tendon damage….sounds fishy to me.

    I tried to get off of Topamax about a year ago due to side affects and my migraines came back instantly. I don’t know if this is a trick the drug company is playing on us, but my only advice to anyone considering this drug would be to THINK ABOUT IT!!!! It is fabulous to have Topamax fix your problems, but is it worth the potential life altering problems it could stick you with? I plan on revisiting my neurologist to find another plan to get off of it as soon as I can…and I take only 25MG/day. (The most I ever took was 75MG). Please be cautious. I am concerned for all of you.

  • Oh, also, something else I forgot to mention (surprise!)…I have no idea if anyone else’s doctor has said this, but when I started the drug (3 years ago) my doctor presented it to me as a “fix” for migraines…something I could try taking for 1-2 years (I was VERY hesitant to go on ANY type of daily medication, as I was on none before Topamax) and after 1-2 years, I could come off of Topamax and my migraines would be “cured” …not sure if this was just a way to get me to start the drug, as even my doctor was taking it at the time, but it wasn’t until I tried to go off of the drug 1 year ago that my new neurologist told me it definitely is NOT a “cure” or a “fix” for migraines, it only temporarily helps, WHILE you take the drug.

    Just something to consider for you migraine folks. You will be pain free while you are on the Topamax, but I can speak from personal experience, without Topamax you may be worse: is this something you want to committ to long, long, long…term?

  • I have contacted the makers of Topamax and reported my loss of hair. I suggest anyone who has hair loss to report it so they will list it as one of the possible side effects on the label. I feel more people need to be aware before taking this medication. When I call the lady I spoke to was a nurse and said it could take up to six months for the hair to grow back.

  • I am a Diabetic with neuropathy and migraines and switched to 150mg Topamax for the migraines so I could take percocet for the neuropathy to get off nurontin/lyrica/etc. that were causing me severe depression for the neuropathy. I started this last Christmas when I weighed a whopping 340 lbs at 6 foot tall. Now 11 months later I weigh 220 lbs (thats 120lb drop in 11 months). It completely wipes out my cravings and makes any carbonated beverage (I only drank diet anyway) taste like …ugh. So I mostly drink water and diet Hawiian Punch. By the end of the year I hope to be 220 lbs. 🙂

    I do notice a slight amount of depression with the 150 mg of Topamax but it is nothing compared to the 3k mg of nurontin.

  • First, I would like to say to Ryan, you have not seen the correct doctor. You have classic Fibromyalgia symptoms. Unfortunately, many doctors still don’t believe in Fibromyalgia. When you make an appointment with a rheumatoligist, ask if the doctor treats patients who have fibromyalgia. Many will not even see someone with that diagnosis. The Topamax has probably hidden some of the symptoms for awhile. It has helped me, but it was not the first medicine prescribed. Try a neurologist as a next resort.I never knew so much about Topamax. I started taking it about 5 years ago for fibromyalgia at the suggestion of a P.A.of a spine specialist. I didn’t even look into the side effects, except for what was included with the pharmacy info. At that time, all the info was related to Topamax being prescribed for migraines. I was started on 200 mg/ 100 twice a day. Within a month I noticed weight loss. Within two months my doctors were running tests to see why I had lost 50 pounds. Obviously, they did not know about the weight loss side effect. The tests showed everything was ok. I didn’t have the libido long before beginning the Topamax and had switched to Wellbutrin, which was fabulous for ME. After skimming through all these posts, I’m glad I didn’t know all this info in the beginning or I wouldn’t have stayed on the medicine. Don’t we all have periods of extreme stress that cause us to go into brain fogs? I never blamed it on my medicines. I was in my early 50’s. Hair is going to start falling out from hormonal changes. My fibro causes so many different things to happen that I can’t blame one medicine when I am on 8 others. There is something call “interaction”. I blindly continued on the med and side effects were noted and eventually lessened or went away. Over the years with a chronic illness, I’ve learned that you have to accept some bad to get to the good. I did try some meds and drop them because there were too many problems to overcome, but I gave them a chance. If I had dropped every medicine immediately, I would not have an effective treatment plan for my condition. I found this site because I was trying to find out how many mg’s of Topmax is prescribed for weight loss. After 5 years, I’ve gained back 10 pounds and would like to lose them. I wondered if I could up my doseage to 300 mg and maybe get that stubborn 10 pounds off.

  • To, Maggie: Thank you for mentioning Fibromyalgia – it sparked my interest and I looked it up. None of my doctors have ever mentioned it, and it does seem to blanket many of my symptoms, along with some others I had never really thought about. (ex: extreme soreness after working out, and TMJ/teeth grinding at night). My concerns would still be that many of these symptoms have gotten worse in the last 3 years since I started Topamax (I’m 25 now, was 22 then) and I would still wonder are they side affects from the medication, or symptoms from an underlying problem I’ve had all along and just never knew it?

    Just this week I started halving my dosage of Topamax (I was on 50mg, now I’m taking 25, even though I said 25 earlier…I forget so many things!) but now I’m wondering: should I get off the Topamax and see if these “side affects” go away, or is the Topamax helping, if you say you were prescribed it for some of the same symptoms…

    I know it feels like such a guessing game and it’s nearly impossible to get a proper diagnosis. But I do have a cousin who was recently diagnosed with Lupus, so maybe she could refer me to her doctor, who is maybe a rheumatologist?

    Either way…thanks for the advice, and good luck with the extra 10lbs! My only advice there would be that any time I changed doses I never noticed a severe difference one way or the other in weight loss, it was steady throughout my 3 years. Of course, everyone reacts differently, but maybe upping your dose and upping your workouts combined would help going into the New Year! Good luck!

  • I started on Topamax just last nite (25mgto50bynext week)because of my latest quest for weight loss. I have known for years that my overeating and obcession with food hs something to do with or with not a chemical in my brain. Occasionally in my life I have taken a med that “fixed” the problem and I could decide on a rational level wether or not I wanted a particular food. I am 60 years old and still dealing with this. You’d think old age would take care of it so at lest I wouldn’t care. Not so. So far–nothing. No effects whtsoever. I took the script phen-phen back in the day and that worked. Anybody else out there know their eating problem is caused by a lack of some chemical in their brain?

  • I started taking Topamax 3 years ago for to control binge eating. I take 300 mg every night at bed. I lost 10 pounds the first week I took it. I’ve lost 25 pounds in all and my binge eating is a thing of the past. I literally use to sit on the kitchen floor and consume an entire cake and cry and contemplate whether or not I would throw it up. Sad – I know. I’m also Bipolar so Topamax apparently works along with my other meds-Wellbutrin, trileptal, ativan (+sleep aid) to stabilize me. So in that respect Topamax has been good (weight loss and mood stabilizer). However, I agree with Mark in that the side effects are enough to make one question whether the drug is really worth it. My brain is basically in a fog most of the time, my short term memory is gone, word recall is seriously lacking to the point that conversations are embarassing. My interest in most things, even my favorite things are no longer there, including my libido. My driving quality has taken a turn for the worse with me driving my husband’s truck into the side of a fast food restaurant on Topamax. I have had several doctors refer to Topamax as Dope-o-max. I’m just so addicted to the drug I can’t get off of it. I’m too afraid of my mood destabilizing and of gaining weight.

  • I know the cake thing. White boughten cake with white frosting makes my knees weak. I also take Wellbutrin. Took Paxil for about three years and gained constantly. Finally convinced the shrink to try the Wellbutrin. He kept saying “calories in vs calories out, it’s not the meds” but I think it helped.

  • Hi Mark,I’m sorry to hear about your experience with Topamax. I haven’t time to read all the comments, but I will second what I am sure some have told you: trust your own experience. Everyone’s body chemistry is different, and if you had that experience, stay away from it.

    Dehydration is NOT good for you, and if it’s killing off your libido, as well as your sense of yourself, do not go there. I looked at the site for topamax and in clinical trials quite a few people reported fairly significant side effects, including confusion, memory loss, etc. How Topamax works is not known but it basically interfers (to all evidence) with voltage-dependent sodium channels, which (I am drawing upon my physiology here) means that your nervous system will probably not transmit things the way that it normally does. In someone with epilepsy, as was pointed out, this can be quite different than in someone with a normal nervous system.

    I am wondering if you might want to look at a “The Diet Cure” by Judith Rossi (no, I have no interest, no affiliate, etc., it’s just one I am currently using). She published it in 1999 and had been doing her program for a good many years before. It focuses on balancing biochemistry through easily obtainable amino acids and etc, and many of the assessments are things you can do yourself. It also features some sound and interesting nutritional info. If you have been trying to lose weight but find that things don’t seem to be working for you, you could give it a look.

  • Hi again. I am an ex-Topamax user. I took it for migraine control. Here’ the whole story… please stick with it.

    I have had headaches my ENTIRE life. Even as a child they were debilitating and interfered with a lot of fun things other kids could do. Not to mention I was a good head and a half shorter than all my classmates. I am still only 4’11′(and that was after what I called the “growth spurt” in grade 9).

    When I was about 18 a doctor sent me for allergy tests. Among all kinds of environmental allergies he also mentioned grains, grain dust, and esp. wheat. (also cinnamon good grief!). I don’t think the doc was too up on grain allergies and sensitivities because he kind of put it to me “to avoid being in fields”. (I live in the “Bread Basket” of the world) so this is very tough. Also to avoid wheat dust while baking etc. He told me to cut back eating wheat, but NEVER told me to QUIT eating wheat or that it was related to my headaches. I went for allergy shots and after a year or so had my children and it was too difficult to keep up with the shots.

    My headaches continued as did other autoimmune sypmtoms. I just started to think that chronic pain was the way it was going to be for me. I gained 55 pounds in a few months and looked bloated and miserable. Pain and poor self-esteem sent me to “the pits”.

    A new doctor tried to assess me for headaches and sent me to a neurologist. Of course, it must be “depression” and I was perscribed amytriptelene (Elavil) for about 8 years. 8 years of extreme sugar cravings. Must be diabetes…no… Eventually I just got sick of being fat and went on an exercise and diet regieme and gently lost 55 pounds in two years. I lost another 220 pounds after that…I got divorced.

    While on the diet I drank soy protein shakes and ate salads and fish and noticed my energy come back and my headaches dissipate. However, once I reached my goal and started eating “normally” again I was soon sick with migraines, weird skin rashes, chronic muscle pain and debilitating fatigue. I was diagnosed with Lupus.

    So, back I was sent to the neurologist who took me off amytriptelene and put me on…. you guessed it Topamax. There the nightmare really began. I did not take to it well and was physically and emotionally totally vegitative. I have chronicled this before so I won’t bore you with the details.

    I felt so awful and frustrated at the lack of support I was getting from my physician that I changed. I was feeling totally suicidal by then and begged to go off the Topamax, which he helped me do. Back to Zomig and Ibuprofin.

    As my mind started to come back I started to read. My sister who works in a nutrition centre suggested a liver cleanse as she was concerned about all the medications I’ve ingested over the years. I was very leary of it. The first time I did it I felt ill. The second time I did it I felt a lot better. I then followed a cleansing diet and then commenced with an elimiation diet.

    Through the elimination diet I could totally determine that the headaches were caused by my old “enemy” wheat. (barley and dairy too, but not so much). I wasamazed at the connection. If I eat wheat I have a migraine the next day. Sometimes immediately. As long as I follow a wheat free diet I have virtually no headaches. Any that I get are minor and usually go away on their own. Which was unheard of!!! Also, as a bonus, my new diet of organic veggies and fruits and grains like quinoa keeps me satisfied and I’ve been losing weight again. I look about 10 years younger, am no longer bloated, and have energy throughout the whole day.

    So, that is how you go from an allergy to Topamax. I feel upset sometimes when I think about the years of pain that I wasted by my ignorance of what exactly to do about a wheat allergy. But I accept that all things happen for a reason. If anything, to help any others that may have the same problem.

    To also make sure my headaches stay away, I do saline nasal syringes (keeps allergens down naturally) and have totally given up caffine. I don’t even miss it. I have plenty of energy on my own steam.

    I wish you ALL the best of success on your treatments. I know we are all individuals with our individual illnesses, but I just encourage you to stick with your gut. If you know the medication is not for you then find alternate forms of treatment. If it is good for you and working then by all means stick with it.

    Regarding Topamax, I would only ever take it when absolutely all avenues have been exhausted. It is perscribed far too readily. There is no cure in a pill for permanent weight loss. Like another said. Less food in and more energy out. Set your mind and your body will follow. I wish everyone who has posted on this site the very best.

    Thanks for reading my story.

    Kim

  • Has anyone experienced hair loss and hair breakage from taking topamax? I have but I don’t really know if it is the Topamax or just my anxiety. I stopped taking the topamax a few months ago and still have the hair loss and breakage.

  • I have been on Topamax for 2 years, now I am having trouble with my liver. They think that it might be caused by the Topamax. I go on Wednesday to have a liver biopsy to find out. My liver enzymes are very high and the doctors have been trying since October 2007 to get them to come down with no luck. Has anyone else experienced this kind of problem from taking Topamax? This is the only medication that I have taken that has worked for my migraines and I really don’t want to stop taking it, I am scared to stop taking it. I have migraines with auras and smells and they last for days and I have been migraine free for 18 months due to Topamax. Thanks to anyone that can give any advice.

  • I have been taking Topamax 200 mg for 8 months.. and since my doc increased the dose to 200mg.. I started experiencing yeast infections.. one after another..after another.. Not sure if it’s connected to Topamax but I can’t think of anything else.. My headaches are gone.. So, I dont want to stop taking Topamax.. but I can’t live with ongoing yeast infection either.. Does anyone else experience this?

  • I have been taking Topamax 75mg sprinkle caps for 3-4 years. I am sorry to hear about such side effects for you. I am someone that has NO tolerance to most drugs. That is why I take the sprinkle caps and such a low dose. The tablets give me terrible heart burn that I could not tolerate. The sprinkle caps cured that. I take Topamax to prevent seizures from a concussion from a car accident. Initially I dropped 40 lbs the first three months, YEAH ! I had no complaints there. They almost took me off the drug for fear I would get to skinny, but the weight loss has leveled out and my appetite has returned somewhat. The worst part is that my hair broke off. I was devastated, but would not take any of the other drugs for fear of getting fat. For hair loss I have started to take hair vitamins and have seen new hair growth. I have also had hair Loc extensions put in that look so natural as my hair grows back. Good luck to you, not all drugs work the same on everyone.

  • I started taking Topamax one year ago for migraines and my dosage was 100mg a day. By summer, I had major hair loss, but it wasn’t until the fall that it was very apparent. I normally have very thick, shiny hair. I’ve now lost over half of overall hair and it is dry, brittle, frizzy and breaks. I stopped taking the drug three weeks ago and I’m still losing a lot of hair. I’m sorry I every started this drug.

  • I forgot to mention in the above comment that I also started suffering from dry eye. I had to start using artificial tears.

  • I started taking Topamax (100mg) about 5 months ago for chronic back pain. I haven’t had the same side effects as you have although I do have a reduced libido. I’m not sure if that is because of the topamax or the lexapro or the ativan? 🙂

    My appetite is definitely suppressed and I have lost weight and I’m not complaining about that because it helps keep the strain off my back.

  • look – i’m on megadoses 500mgs for seizures and would love nothing more to NOT be on topamax and it pisses me off to be on this for WEIGHT LOSS and then kevtch that it changes your personality. then go off it. I can NEVER go off a drug I NEED and hate. I want to go off it and die – so I want you to go off it just so I can experience freedom from the drug through you. Be fat and happy and stop complaining about weight – at least you’re ALIVE AND FREE AND ALIVE AND FREE AND ALIVE AND FREE MAN. fuck the rest of life. I WANT OUT OF the trap of my seizure encased trap topamax puts me in.

  • As a medical student who has just completed neurology (with several lectures on migraines, seizures, and topamax) and a migraneur who uses Topamax herself, I feel the need to comment on some of the things mentioned by other commenters on this site.First, as this drug affects the central nervous system by enhancing inhibitory neuron signals and suppressing excitatory signals, one would probably not see results in the first couple of days because the effects need to build up in your system. These early effects are, I’m sorry to say, most likely psychosomatic.Also, as with most neurotropic drugs (such as topimax or antidepressants) most doctors will want to keep you on the drugs for at least a month before taking you off, as negative side effects tend to appear first and then either level off or disappear. Don’t give up on something just because it makes you feel ill for the first day or two, it may end up being a life saver.The numbness and tingling in the hands, fingers, and face that some have felt is termed a “parasthesia” and is a known side-effect of topiramate that the prescribing doctor really should have warned you about. It also should have been explained in the ER that it was not dangerous or permanent and that you shouldn’t worry. I experience these parasthesias sometimes, but the benefits of being migraine free mean I try to take the episodes in stride.To the person with the chronic yeast infections, you should probably have your blood drawn and a CBC with differential to determine if you have some kind of leukopenia that is making you more susceptible. It is unlikely, but it could possibly be a side effect of the topiramate.Some people may also not be experiencing true migraines, and therefore it’s not surprising that a migraine drug does not work for them. If you have tried several migraine drugs (both prevention and ablation therapies) and nothing works, perhaps you might look to another diagnosis, as there are MULTIPLE causes of headache. Don’t always blame the medicine you are taking for the development of new symptoms, as sometimes these might be the clue your doctor needs to find out what it truly wrong with you.The most important advice I can give anyone though is to TALK TO YOUR DOCTOR! Write out your questions on a little note card before you go to the office. Make sure they explain things in a way YOU can understand. If they are patronizing or just don’t take your desires into account, it’s time to find a new doctor. Medication decisions should be a combined effort on both your parts.I hope this helps all the people who come upon this site looking for information about topamax and drugs in general.

  • I have a 10 year old son taking topomax for his tics associated with touretts syndrome, he was currently taking orap, with sugnificent weight gain, hes up to 50 mg a day of the topomax so far the only effects i have seen are hes sleeping better and not as hungry this is his 5 th day.

  • well since i last posted i had to get my son off topomax he was becoming overly sensitive he was trembling nad couldnt express any feelings such as happy, or hurt.I and his drs do not wnat him on a “mood stabilizing drug.

  • Hi everyone!It’s a great thing to find out that you are not actually going crazy! Istarted taking topomax 6 weeks ago(25mg) and was told by my neurologist to increase by 25mg every two weeks. I managed to make it to 50mg for 2 days when I started to feel AWFUL. I was convinced that I was a having a stroke or a brain aneurism. The left side of my face went numb along with my left arm. I was having severe pain in my jaw and under my chin and also had that “watery” feeling in my mouth that usually signals vomiting. I called my neuro’s office right away and was told that I needed to increase my potassium intake. So, I ate a couple of bananas and had some orange juice (even though I still felt like throwing up) and eventually the numbness went away. The following day, same story, and I really felt too nauseous to eat or drink anything. The neurologist’s office told me that I could take potassium supplements if I didn’t feel up to eating. Well, that did help with the daily numbness and tingling but not with the pain in my jaw/chin and the watery mouth. I decided to go back to only 25mg of topomax, and I did feel better for about a week. Then, the pain and all started again and I went off the topomax altogether 4 days ago. Here’s the problem: I still feel the pain in my jaw/chin area and I wonder if it’s ever going to go away? I kind of feel like I didn’t give the drug enough of a chance. It did help my migraines, and one of my friends even commented that I seemed happier (even though my kids would probably say otherwise). Has anyone else had pain in their jaw, muscle cramps in their neck, watery mouth?

    Thanks to all who have shared their stories, it helped me realize that there are many and varied side effects out there; I think I feel better already

  • I have been on topamax for about 10 months for seizure disorder and have only one problem, that is no persperation. So working out has stopped. I am resuming however, with swimming and walking and yoga for now. No morbid thoughts, or any of that. NO prob with sex, or appetite. I guess i’m lucky. oh well good luck to all. scott

  • Question for all of you diagnosed with Bipolar I disease:

    I have been taking Depakote ER on and off since being diagnosed in March 2007 following a manic episode. I only take a small dosage (750 mg) but feel lethargic, apathetic and basically dulled. In addition, I have noticed that I an constantly hongry and have gained weight. My Dr. wanted to put me on Seroquel as she said that it has beter anti depressive qualities but I read that it also causes extreme weight gain. I have an apt. this week and was wondering about adding Topamax and Wellbutrin. Are there people who take all three or can you taper off Depakote all together? Of course I will also discuss with Dr. but just wonder.Thanks, Lee

  • My daughter has had a non-stop headache for over a year. Doctor thinks maybe chronic daily headache after many tests and nothing specifically came up, except a spot on her brain that may have been there before, not necessarily connected with the headache. She has been on Topomax now for about 2 weeks to see if it will break the cycle, but so far not. I haven’t noticed too many more side affects than she has already experienced before the Topomax such as loss of appetite, tingling sensations, tightness and pain in joints, knees and fingers in particular, feelings of weakness and constant fatigue, inability to concentrate which is causing her problems in schoolwork now without much understanding from one of her teachers. But most of these symptoms she already had before starting Topomax. My son used it for about a year when he was younger for migraines, and then they went away and was able to stop taking it. My daughter is 13.

  • I am weaning off Topamax after building up to 100 mg daily for chronic pain management. It was effective, but with lingering symptoms, my doctors suggested going up to 200 mg daily. At 125 mg daily, I started to have debilitating n/v, diarrhea, the brain fog, moodiness, and too rapid weight loss.

    I wasn’t told “anorexia” is a side effect of Topamax, just that weight loss is. But not being able to eat because I’m heaving all the time, helps neither the pain nor me staying gainfully employed.

    I have a heart arrhythmia that would have eventually caused stroke range tachycardia had the vomiting continued to the point of electrolyte depletion. No one mentioned that, and I found out from the pharmacist, not either doctor, that Topamax reduces the efficacy of hormonal contraceptives yet is potentially teratogenic.

    Very scary for my husband and family. Please ask every question you can think of BEFORE going on this medicine.

  • Hello,I was recently put on Topamax 400mg’s a day for a seizure. Topamax is . Lets just say its taken me 25min to type this far. This drug for me, makes me so fuzzy&Hazzy.I Hate the pain in my hands and feet are constantly tingling .I cant wait to get off this drug it is the worst drug that i have been on.

  • To go back to “mell”‘s comment tho – should people really be using a narcotic as dangerous as Topamax to loose weight anyway? This experiment was crazy to begin with. Those of us who have neurological problems that Topomax is intended to solve are at enough risk taking it. Mark – are you sure you want to take that risk just to loose weight? There are other ways to do that. If I could stop taking Topomax I would do it in a heartbeat! I’m not trying to lessen any pain or hardship you might feel Mark but use the proper tool for your problem. This is some dangerous stuff!

      • Regardless, there are still a lot of dangerous medications out there. Or worse, the the ones that are marketed for one disease, and the big pharmacy companies use us as guinea pigs through “free samples” from the doctors office

  • Topamax saved my life, but after I was over my crisis, I also knew that I had to get off of it. While at my worst I was taking 400mg per day.

    I took it for anxiety and PTSD. Before taking topamax I couldn’t do much of anything, including not being able to sleep.

    I never noticed much weight loss if any, but my migraine headaches when away and I was finally able to not feel afraid and sleep for the first time in over two years of sleeplessness.

    However, once I became well, I was so sleepy that I wanted to sleep all the time and my sex drive was less than what it should have been.

    After about 6 years of taking it, I ended up taking less that 50mg per day and eventually tapered off the drug completely.

    To this day I still don’t get headaches and I still feel more steady.

    I have been off of it for almost a full year now and am glad to have my life back and better than ever.

  • Hey Mark,I’ve been on Topamax for about 3 years now for migraine prevention. Wow! you’ve described it perfectly! I like to say I’m a Topamax Zombie! Loss of appetite for everything: food, sex, etc! The 40lbs I’ve lost is nice but the loss of libido is really taking a toll on my marriage! I’m thinking of coming off it but I must admit the thought of the 3 day long migraines returning is a bit scary! Have any of your posters found a med that works for the migraines without the side effects?Thanks!Mark K.

  • Donna, perhaps your body works well with Topamax, but I personally lost 42 lbs in three months on Topamax. I was prescribed the drug as a sleep aid, whilst my doctor also prescribed it to help with the weight I had suddenly dangerously gained from a totally different medication. I went from 115lbs to a whopping 185lbs from taking the other medication. After taking Tompamax for three months, I dropped down to 142lbs with no effort at all. After I discontinued the use of Topamax, I had children and lost even more weight. Today I weight 128 lbs and have a 4 year old and a 2 year old.

    The drug Topamax, in my opinion, is a VERY strong drug that should only be taken for short periods of time. It does have quite a few side-effects and atleast for me, the 3% body weight is INCORRECT. I lost so very much so very quickly on that medication.

  • I was prescribed topamax for migraines and had to quit due to many of the side effects listed in the post. I was never overweight (slightly skinny in fact) and the weightless I had was frightening. After 2 months on the drug, pretty much everyone I knew was commenting on it. The side effects should have tapered off, but instead some got worse. My libido seriously dropped, and I started having what the post author describes as 'morbid thoughts'. My sleep cycles got massively screwed up, which compounded a lot of the other side effects. Quitting was tough on its own because a lot of the side effects lingered. My memory still doesn't feel right over a month later.

    The crappy part is it did help reduce the frequency of my migraines. But, it was causing some major issues for me that outweighed that in the end.

    Side effects are obviously different for everyone. I took exception to some posts that seemed to imply the author might be exaggerating though. Many people can't tolerate the drug, and it can have brutal side effects.

  • Mark,

    I can relate so much to your story. In the beginning, the ability to focus, and then the fog closing in around you, until the point where both you and your friends do not recognize the person who is in front of them. I’m going to be talking to my doctor to see if I need to go through titration to come off the medicine. I’ve only been on it for about a week.

    Joe

  • Unfortunately I’m going through some of that. But I’m having problems with blurriness I’ve got pain in my neck, going to the back of my head. It’s constant I’ve started 1/13/2016. At first I didn’t notice little things like sitting and feeling like I’m about to pass out. Or not being able to see that well, local emergency room you have to go blind before they believe anyone. Currently I have pain in my lower sides of my back not my spine. Pain starting around my eyes, I can’t be around bright light it hurts to bad or loud nosy. I’m scared to tell my doctor everything because he might think I’m crazy. But I’m not me, I can relate to not caring I just want to be free. I used to write, my writing is horrible. I can’t get enough water, my mouth goes dry and it feels like it will crack. I feel like I’m hungry all the time, but not junk food. Veggies and fruit.

  • Oh wow. I’m on T-Max as a mood Stabilizer for Bi-Polar and it’s been wonderful. I even put up with the teeth grinding, (how I found this) I couldn’t imagine how numbing it would be if you didn’t already have the extreme hi-low swings.

  • I have been trapped in a nightmare for months unable to escape. Topamax has taken me to the lowest point in my life with panic attacks, depression, anxiety and even suicidal thoughts. The funny thing about it is I really didn’t even connect the dots that it could even be the Topamax for some reason. The brain fog and sudden onset anxiety has been tremendous. I have in a roundabout way isolated myself due to how horrible it has made me feel. I don’t feel like the same happy go-lucky energetic person. I am normally a reserved yet gregarious person but the fatigue coupled with physical manifestations of anxiety after increasing the dosage have been absolutely debilitating. I’m still getting migraines constantly, my vision has blurred, and my social circle has been shattered. It’s taken me realizing that my emotions have actually been numbed to really click that something is seriously wrong. The timing is too coincidental. I have felt progressively worse and worse and have developed the worst fatigue in my life. The symptoms were so intense I felt as if it were some underlying medical issue, so severe I don’t even think it could be my medication. Part of me in my topamax induced haze typing this still thinks that. My work life has been threatened when prior to increasing the dose I was on a path to landing a second promotion within a year. I have a great job! My migraines interfered so I readily accepted the increased dosage to help stop missing days at work. I took 50 mg for a year and a half and felt some side effects but at the suggestion of my doctor increased to 150mg 4 months ago. I’m terrified these feelings may never fade. I had an MRI, eye test, and chest x-ray and all were clear they said. The only thing that is left is the increased dosage of topamax. Taking this drug has been an absolutely terrifying experience and I’m worried about the withdrawals of coming off too. I’ve been walking around as if a shade of my former self. What many would classify in some ways as the ‘walking depressed’. I’m sure that’s how I appear… It made matters worse when the neurologist said he thought I had MS base don the symptoms I described (not that it could be medication or vitamin deficiencies) and then made me wait 7 weeks to hear results. I just had 200 units of Botox injections for my chronic migraine 2 days ago and my neurologist advised me that I can come off the topamax to gauge the efficacy of that treatment. My only hope is that there are no permanent effects as my cognition, vision, and over all quality of life is no where near the same. It has been a devastating experience. Thanks for you post, I’m hoping my quality of life improves and I’ll be okay…

Who Wrote This?

Mark McElroy

I'm a husband, mystic, writer, media producer, creative director, tinkerer, blogger, reader, gadget lover, and pizza fiend.

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