Topamax – Aftermath

I decide I’d rather gain weight than lose myself.

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


I stop taking Topamax on Sunday night. I keep this transition a secret; in fact, I’m ashamed of it. I feel as though I have, yet again, started and abandoned a weight loss scheme … most likely because I lack the strength of character to stick with such a plan.

Monday morning, we get up early. For the first time in days, I don’t feel foggy. I catch myself humming in the shower and dancing a bit in front of the mirror. Later, I goose Clyde two or three times as he tries to comb his hair.

As we check out of the hotel, I have a bit of fun with the woman behind the counter. She responds with a shy giggle; we have a nice chat.

Once in our car, we drive out into the gray, overcast day. “Where do you want to go for breakfast?” I ask.

“You didn’t take Topamax last night,” Clyde says.

I freeze, busted. “You can tell?”

He nods. “I can tell.”

I drive several blocks in silence. “Did you like me better when I was on Topamax?” I hold my breath.

Clyde doesn’t hesitate. “No.

Atlanta traffice whizzes past us. The smell of Clyde’s coffee fills the car. I imagine how my Einstein’s sun-dried tomato bagel will taste, smeared with just the right amount of lite cream cheese. I look forward to getting home, to posting these entries, to contacting clients, to resuming work on my novel.

Slowly, slowly, the world comes back to life … and so do I.


Many years after this experiment, I found a sustainable, healthy way to lose weight and maintain that loss. Read about it here.

Mark McElroy

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

124 comments

  • there is no way with any stretch of the imagination that marks words could offend – they are his words about his life

    It is as though you had a job to do – to find fault with a post…

    man, could the drugs be making someone sensitive…(no scarcasm – they can and do)makes me mad that someone had a positive experience (much needed after a few bad days it sounds) and shares it and then another knocks it down.Encouragement in danger if extinctionI do not know you mark but I am so glad when anyone has a good day

  • mark: i think more of the people who visit this site have personality disorders that you think. i think that you should send some of your left over topamax out to them. whew!

    and to the fellow who want to know how to go off his topamax? you have to wean yourself off, or you will start having seizures, even if you’re not on it for seizures! so, you better get that prescription filled!

  • I have been taking topomax for 6 months for migranes and it has worked great! It has changed my life. I suffered from headaches daily. Has anyone noticed that their body temperature has changed while taking topomax? My body temperature has increased about 1 degree since taking topomax. Just curious to see if anyone else has experienced this side effect. I have recently experienced some hair loss as well. Is this temporary? Are those experiencing hair loss taking 100 mg or more? Could the hair loss be from a lack of nutrients since you do lose your desire to eat with this medicine. I have recently started taking the Hair & Nails Vitamins from GNC. I am also increasing my protein.

    I take 100 mg. of Topomax. My suggestion to those who can’t sleep is to take this medication as soon as you wake up in the morning. My doctor told me to take it at night and this will not work! You really need to take it first thing in the morning. Good Luck!

  • I am so happy to find this web site. My Doc will be happy that I’ll leave him alone too! I started taking 100 mg of Topamax about 7 weeks ago for migraines. I was taking depakote and it worked great, however, I gained 11 pounds way too quickly! This is great except for the hands and feet tingling! I thought it was just me! I was going nuts! But, now that I know it happens alot, Im ok!

  • i need some answers! i started taking topamax over a month ago for severe migrains and experienced many side affects, no desire to eat, tingling, zoned out, agitated, suicidal, stomach pain, diarrhea, body aches, repulsed when i did eat, i felt like i didn’t even know myself, i felt like i was stupid because i couldn’t think, confusion, mood swings, minor memory loss, loss of taste, soda felt like it had no carbination, and these are just the ones i can think of off the top of my head. i worked my way to 50 mg at night. i stopped taking them about a week ago, because of these side affects, i still don’t feel like myself, i am sick every day. mostly with nausia, bad stomach pain, and diarrhea. does anyone know if these symptoms will go away? and when?

  • I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.

  • Topamax Taper and WEIGHT GAIN Question

    I was on 100 mgs of Topamax for a long time, but could no longer tolerate the side effects…mostly the memory loss. So, I lowered it to 50 mgs, even though I had more migraines.

    Recently, I have tried some other medications and lowered it by 1/2 a pill. That is 12.5 mgs. I gained 5 pounds immediately.

    I eat normal amounts of healthy food and exercise.

    Has anyone lowered this med or gotten off of it and gained weight VERY RAPIDLY? Does it even out?

  • there is no way with any stretch of the imagination that marks words could offend – they are his words about his life

    It is as though you had a job to do – to find fault with a post…

    man, could the drugs be making someone sensitive…(no scarcasm – they can and do)makes me mad that someone had a positive experience (much needed after a few bad days it sounds) and shares it and then another knocks it down.Encouragement in danger if extinctionI do not know you mark but I am so glad when anyone has a good day

  • mark: i think more of the people who visit this site have personality disorders that you think. i think that you should send some of your left over topamax out to them. whew!

    and to the fellow who want to know how to go off his topamax? you have to wean yourself off, or you will start having seizures, even if you’re not on it for seizures! so, you better get that prescription filled!

  • I have been taking topomax for 6 months for migranes and it has worked great! It has changed my life. I suffered from headaches daily. Has anyone noticed that their body temperature has changed while taking topomax? My body temperature has increased about 1 degree since taking topomax. Just curious to see if anyone else has experienced this side effect. I have recently experienced some hair loss as well. Is this temporary? Are those experiencing hair loss taking 100 mg or more? Could the hair loss be from a lack of nutrients since you do lose your desire to eat with this medicine. I have recently started taking the Hair & Nails Vitamins from GNC. I am also increasing my protein.

    I take 100 mg. of Topomax. My suggestion to those who can’t sleep is to take this medication as soon as you wake up in the morning. My doctor told me to take it at night and this will not work! You really need to take it first thing in the morning. Good Luck!

  • I am so happy to find this web site. My Doc will be happy that I’ll leave him alone too! I started taking 100 mg of Topamax about 7 weeks ago for migraines. I was taking depakote and it worked great, however, I gained 11 pounds way too quickly! This is great except for the hands and feet tingling! I thought it was just me! I was going nuts! But, now that I know it happens alot, Im ok!

  • i need some answers! i started taking topamax over a month ago for severe migrains and experienced many side affects, no desire to eat, tingling, zoned out, agitated, suicidal, stomach pain, diarrhea, body aches, repulsed when i did eat, i felt like i didn’t even know myself, i felt like i was stupid because i couldn’t think, confusion, mood swings, minor memory loss, loss of taste, soda felt like it had no carbination, and these are just the ones i can think of off the top of my head. i worked my way to 50 mg at night. i stopped taking them about a week ago, because of these side affects, i still don’t feel like myself, i am sick every day. mostly with nausia, bad stomach pain, and diarrhea. does anyone know if these symptoms will go away? and when?

  • I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.

  • Topamax Taper and WEIGHT GAIN Question

    I was on 100 mgs of Topamax for a long time, but could no longer tolerate the side effects…mostly the memory loss. So, I lowered it to 50 mgs, even though I had more migraines.

    Recently, I have tried some other medications and lowered it by 1/2 a pill. That is 12.5 mgs. I gained 5 pounds immediately.

    I eat normal amounts of healthy food and exercise.

    Has anyone lowered this med or gotten off of it and gained weight VERY RAPIDLY? Does it even out?

  • I hope that you learned a valuable lesson from this. You could have done some serious damage to yourself from taking this medication which is designed for people who need it. Although the side effects were what you were after, it changed you as a person. Ask yourself, would you be a better person if you were thinner? Do your friends choose to spend time with you because of the way you look OR because of the way you make them feel when you are with them? Love yourself for who you are. You will be happier for it.

  • Would I be a better person if I were thinner? Do my friends choose to spend time with me because of my looks or the way I make them feel? Can I love myself for who I am?

    I appreciate you stopping by, but would suggest you may be doing a bit of projection here. I’ve never doubted that I’m a fine person, fat or thin. My friends and associates aren’t so shallow as to gauge the quality of my company by my weight … nor am I shallow enough to imagine that they do so. And I do love myself just as I am.

    I’d like to lose weight so that my blood pressure will go down, my clothes will fit better, and my personal satisfaction with how my body looks will increase.

    That’s it, in a nutshell! Hope the lack of deep psychological issues isn’t a disappointment for ya.

  • I took topamax to loose weight. Well I lost it but I lost my self too. I lost words, I lost my ability to think thoughts through, and I lost any hope of creativity. I started lowering my dosage about a week ago and although I’m suffering some withdrawal my mind is already clearer. I’s rather have my mind and personality than a thin body.

  • I agree with the above poster that this medication is not specifically for weight loss in and of itself, so frankly, I’m not surprised it had side effects you were not happy with. Its appetite suppressant qualities are actually a side effect of its intended use: as an anticonvulsant and as a medication for treatment of bipolar and PTSD patients who do not respond to other traditional medications used for those mood disorders. I’m also a little skeptical that you had the “mellowed out, depressed” effects and perhaps what you describe as depression was merely one of its other side effects — being a topamax user for its intended purpose, one of the initial side effects which can go away after extended use is initial sleepiness. I’m also skeptical that you were experiencing a lack of interest in food from the topamax as it takes more than 12 hours to obtain a level of in the bloodstream in order to take an effect. In fact, it takes several weeks. I’m thinking you were just feeling doped out for a week and thus, just weren’t interested in much at all because you were just plain sleepy. Just how much were you taking anyway? Were you titrated up, or did you just gulp down a high dose right away?

    For me, using topamax for its intended purpose, (to quote from you)slowly, slowly, the world came back to life, and so did I. I’m offended by your account.

  • Diana wrote: “I’m skeptical that you had the [side effects from Topamax] … I’m offended by your account.”

    Mark replies: Oh, well … if I flinched every time one of my “accounts” didn’t sit well with readers, I’d be twitchier than a ring-tailed cat in a room full of rocking chairs!

    You’re welcome to be as skeptical as you like, my dear! (For that matter, I encourage healthy skepticism with regard to anything you read on the Internet.)

    When on Topamax, I experienced sweeping personality and mood changes — not just the sleepiness you mention. Sorry that’s hard for you to swallow … but the fact is, I have no reason to misrepresent what happened to me.

    Meanwhile: I’m glad it works so well for you!

  • hi my name is val im very worried about taking topomax my doctor recommended it for me for an appetite suppresant i was reading a bit of stuff i suffer form ocd/depressioin i cu rrently take anafranil an d seroquel 12.5mg i am over weight and have diabetes it is very hard to lose weight with the anafranil i am always hungry but i am terrified of mood swings and more sepresson and more sleepiness i get tired already from my meds i ahve to fight them if any one h as any comments pl ease em ail me with some helpluvsval

  • I just started taking topamax for migraines. I had a really bad debilatating migraine on Dec 4 and have had subsequent headaches just about everyday there after until Dec 31 when my neurologist put me on topamax. I couldn’t work, cook, or stay out of bed more than 3 hours at a time, without retreating because of the pain and nausea. Topamax helped me get back into life. I am very concerned about the side effects which seem to outweight the good (kidney stones, permanent eye damage, chest pains, just to name a few) and want to try something else. I think everyone that have commented make some valid points. Topamx does work for those who really need it and has life changing effects but it is a powerful drug and should not be taken lightly. Doctors should be more responsible than to prescribe this to unless it is necessary and have discussed the medication with the patient before allowing the patient to take it. I do have a real need to use it but I am concerned about the side effects. Had my doctor explained the medication to me I think I may have opted for something else first. It did work after the first day I took it so it is an effective drug, but the side effects concern me. I’d really like to hear comments from long time users before I make the decision to stop taking it.

  • I HAVE JUST QUIT TOPAMAX OVER THE LAST FOUR WEEKS AS MY DOCTOR AND I DISCUSSED. I WAS MAKING CHRISTMAS CANDY AND MY HAIR WAS FALLING OUT IN EVERYTHING I WAS DOING. ON MY PILLOW, DOWN THE DRAIN WHEN I SHOWER OR JUST RUNNING MY HAND IN MY HAIR OR JUST SITTING WATCHING TV.I HAVE LIVED WITH THE TINGLING AND THE BURNING IN MY HANDS AND FEET FOR TWO YEARS. I ALSO KEEP A NETTLE RASH.WHICH IS A RED DOT SURROUNDED BY A WHITE RING. THIS RASH IS ALL OVER BY BODY. ALL THE TIME. IT HAS GATHERED IN A MASS ON MY RIGHT LOWER LEG AND LEFT A SCAR WHERE I HAVE SCRACHED SO MUCH. MY SPEECH HAS BEEN SO SLURRED OR BROKEN UP BECAUSE I CANNOT MAKE THE WORDS GO TOGETHER THAT MY HUSBAND CAN BECOME VERY AGRIVATED IN UNDERSTANDING ME. I WAS TAKING 1/100 IN THE MORNING AND 3/100 AT NIGHT THIS WAS TO HELP ME SLEEP AND TO PREVENT POST TRAMATIC STRESS DISORDER/DISSASSOCIATION. THE I HAVE HAD FEWER EPISODES BUT THE SIDE EFFECTS OF THIS MEDICINE IS OVERWHELMING TO ME. I WISH OTHER PEOPLE WELL IF THEY CAN HANDLE IT.

  • I was on topomax and paxil at the same time for a while, i quit taking my paxil because i didn’t like it , but i never had any problems with the topomax, it helped me lose a little bit of weight, and i felt better when i was taking it, only thing is that once in a while people would say i was staring into space for a while, but that wasn’t often, and i am a daydreamer also, so i don’t know that it was even from the topomax. anyway, i have been off of it for a while because i missed an appointment, and i moved, but i am going to go see a doctor soon and get it back. i love it. sorry for those who don’t

  • I have just started taking topamax for epilepsy and I am concerned of some of the side effects I have heard of. I was on epilim and experienced the slurred speech, loss of ability to converse and also gained 8kg in 1.5 months. So far I have found much of the side effects the same but hopefully without wont see any more weight gain.

  • I have suffered severe “headache” behind my eyes since I been on Topamax. I was prescribed it for weight loss and loss merely 15 lbs. (I could stand to lose much more). I have read that Tompamax can cause Glaucoma(spelling)? Anyone have any information?

  • My husband was on Topamax for a little over a month. He has had debelitating headaches for years, and because of the problems they have caused he can no longer drive or hold a job. He has been on pain management for 4 or more years, it’s been so long I forget. When his neurologist told us about Tomamax we jumped at it.This is a decission we regret greatly. I am not sure if anyone else has experienced this, but it was hell. He was obsessive and prone to panic attacks, he became easily agitated. He quite doing everything including eating and sleeping. He even pushed our two year old daughter and yelled at her.My husband has never even raised his voice to her since her birth and he knew he was losing it.In his moments of clarity he would cry, he just wanted to be back to normal even if it meant the pain. Yes he lost weight, and the pain was less, but his blood preassure was up, his pulse was outragouse, and he was a different person.Since they pulled him from the medication they found that they needed something to counter the side effects, because they don’t seem to be going away. They keep trying to wean him off the new med, but as soon as they drop the dosage of the new med the side effects return.If Topamax works for you fine, but I am looking for anyone who has had similar symptoms to my husband, and if you have had any success in getting the side effects to stop, how long did it take, and is it possible to do it without other medications, We are praying this is not permenant. please respond.

  • i started taking topamax over christmas and have been on it for two months. My doctor put me on it as a mood stablizer. I have not slept in a month and forget to eat. My hair is falling out and I feel like a different person. My memory is foggy and I feel like the only emotion I can really express is anger. i am scared that I will not be able to sleep again. My Dr. prescribed a sleep aid and it did nothing. I just lay in bed. Has your husband started sleeping again?

  • That sounds similar to my husbands problems, and yes he has started sleeping again, but they had to put him on a fairly high dose of zanex (not sure on the spelling) to counteract the other. It’s the Zanex that is keeping him from going over board. While his headaches are back in full force, he is himself as long as he remains on full dose of the other med. We are concerned and I am trying to find out if there is some permanent damage. So far the only thing per. I can find is occular damage.

  • I am manic but it’s always been managable. Recently I became severly depressed and since my father is bi-polar I thought it’d be best to seek help immediately. The Dr. put me on Lexapro, Vistaril, Neurotin, Xyprexa, and Remeron. I was a walking idiot (scared,couldn’t remember anything, panicky, paraniod, etc). I gained 30 lbs (125 to 155) in less than 3 weeks. I took myself off everything. I went for my check up today and the Dr. said we’d try Topamax. It’ll help w/ your mood swings and help lose weight – he said. I think this’ll work!! From ready all of th responses I am not sure if I should even get it filled. Is there anyone out there who could vouche that this is an effective medication? I am desperately seeking HELP!!

    Thank you!

  • I was put on Topamax exactly two months ago when I landed in the hospital because of a combination of the migraine medication, Imitrex, and a 40-year long cigarette smoking habit. A deadly combination, I was told! The Topomax was to help me quit smoking and, guess what? It has!! I have not picked up a cigarette in two months! I have not gained an ounce either! I’m loving that, but the only problem is, I seem to have lost interest in a lot of things I used to do like read and enjoy ‘life’. I’m a little depressed.

  • I have been on topamax for a few months for severe headaches. Before topamax, I was out of work on a regular basis, every 2-3 weeks at least 1 time a week, but lucky for me I could make it up on Saturday. I also could not sleep at night and was trying tylenol pm, benedryl, anything over the counter to help, but nothing worked. I also found out that I suffered from fibromyalgia as well. This did not help the headaches. My doctor put me on topamaz and began increasing the dose slowly. The headaches started going away slowly and I was sleeping better. By the time I reached 100 mg 1 time a day, I was not having headaches anymore. But, I am now afraid to increase it to the 100mg 2 times a day as I can’t spell, trust me, this is hard, and I can’t think very well. When I go to speak, I either get so tongue tied or twisted it comes out sounding crazy and senseless. I usually laugh and make fun of my self, but I am really terrified. My job requires me to be johnny on the spot, at all times. Also, I feel like I am going to crawl out of my skin, my anxiety is sky high!! Everything is setting me off, and making me upset. Now, I am trying to figure out if the trade offs out weigh what I had going on before. Not being able to pay bills from missing work, not sleeping, and hurting severly, or what is going on now!!

  • I to am taking topamax amazingly though I have been taking it for a long time have not lost any weight….however the benefits out weigh what I will feel like if I do not take it…

  • I have been struggling with a binge eating disorder and general anxiety disorder for several years. About a year ago, I began therapy to address the problem and my BMI of 29 once and for all. I reluctantly began taking Celexa about six months ago, and while it helped with my anxiety, I noticed little postive impact on my bingeing. About a month ago, my psychiatrist prescribed topamax, suggesting that start at 25mg a day and titrate at a rate of 25 mg a week until I reached 100mg a day and then see her for reevaluation after I had been on 100 mg for two to three weeks. Being an attorney, and an analytical person by nature, before filling my perscription, I spent several hours on the internet reviewing scientific and medical literature as well as post boards such as this one. I must admit the postings I read on sites such as this made me feel very apprehensive, but when I stopped and thought about it logically, I concluded that, with some exceptions, it seemed that the majority of people experiencing severe side effects either 1) had not been taking the medication for very long, 2) had a history of difficulty with medication for treating their various health problems, or 3) were taking Topamax solely to lose weight. As I said, I certainly understand that there are some exceptions to that generalization, but I think any given percentage of the population is going to have a negative reaction to any given medicine. My point in this post thus far, and in general concerning the use of Topamax, is that if you are reading this because you are considering, upon the advice of your physician, taking Topamax to treat an eating disorder such as binge eating or bulimia that is accompanied by depression or anxiety, please don’t let other people’s bad experiences that you read about on the internet scare you. Topamax is certainly the most serious medication I have ever taken, but I believe it is really helping me. As I have increased my dose, I do notice some tingling in my feet and hands. It doesn’t hurt but it does feel weird. I also feel more tired than usual. Finally, once I got up to 75mg, I have started some minor short term memory lapses – I’d say the worst of it so far has been that I locked myself out of my apartment twice this past weekend. My period was also irregular this month. My pyschiatrist assures me that these side effects are all very common and not likely to persist once I level off at a regular dose. My relationships with my friends family and fiance have not been affected and I am having no problem handling my demanding and busy job. In addition, despite all the side effects, my mood feels much more stable already and I seem to have reached a point where although I am still thinking about bingeing, I simply can’t seem to work up the interest to follow through with it. In fact, I haven’t had a binge in almost two weeks and I’ve lost four pounds in the three and half weeks I’ve been taking it. My pyschiatrist has recommended that I stay at 75 mgs for an extra week before going up to 100mg because apparently titrating very slowly helps prevent or at least minimize the side effects. I hope this information is helpful to others.

  • I find it very interesting how quick people seem to be to bash this drug and/or any drug. Under a doctor’s supervision, I have been on 100 mg Topamax now for 6 weeks for depression/alcohol issues and for a serious, health-impacting weight problem. I am not going to be too specific about this, for various reasons, but a) the drug is working for all of the above, and b) in particular the dieting is going very, very well.

  • is anyone taking topamax for intercranial pressure? I think that it is a good medication but the side effects can be a little difficult. I find that I burn very quickly in the sun and I over heat very easily. I am nauseas all the time and can’t eat. I can only drink room temperature water and nothing else. My feet tingle and I feel very weak and tired. My seizures are gone and the pressure in my brain has lowered so I am willing to deal with it. If I don’t I will have to go for surgery!

  • I have been on Topamax for over three years. I was taking 1000 mg. It didn’t bother me, and I loved it. I took it as a mood stabilizer as I am a manic depressive. I want to go back on it. I have tried carbamazapine, lithium, neurotin, effexsor, kepra, geodon, wellbutrin. Nothing worked as well as Topamax. Has anyone ever heard of Topamax damaging their kidneys. My psychiatrist took me off because he thinks it will damage my kidneys.

  • and one other thing…how can another be offended by an account?

    In other words, you are saying that you are offended by reality

    This is an event that happened to him.

    you are offended that something happened to another?

    Are you offended that the moon shines

    I am sorry for the rudeness, it just seems so petty and out of character for a “help” site

  • I am not offended when the moon shines (what the heck are you trying to say, nooffense?), but I get defensive too when I read about someone bashing Topamax because it may deter someone who really could benefit from taking it, to take it. I have been on it for a year and a half and I am extremely thankful for it. There are side effects, but it is better than chronic migraines. However, I would not recommend it for weight loss. That is not what it is intended for. If you really need it (aside from vanity), try it.

  • I have been on Topamax for 2 months now for severe migraines… and for one I can say I went for 1 complete month with out having to take more than a basic excedrin, I also have been losing weight, which has been a constant battle.Taking Topamax has not been without side effects,tingling in my hands and feet, soda tastes horrible, I fells sick to my stomach every now and then, and yes, at times I feel I am not conntected to the world. I do have a few memory problems, …. but I have made up my mind that the side effects are far less troublesome then the migraines and in a few months I am going to ask my doctor to reduce my amount (I am on 100) to 75. For people who suffer migraines, topamax may help them. Please do not be discourages by what you read. We all are different. What works for one, might not work for another, …but younever know until you try. Living without having a migraine is worth it to me. Losing weight is an added bonus.

  • Though topamax may not br for everyone , it can help many overcome many of the numerous medical problems you are facing. I have suffered from migraines for many years and have found the medication helpful. You must try other medication with your doctors if this drug is not working for you.

    Be realistic about what is available a ask your doctor. Speak up if you don’t feel the medication is helping. Explore the medication first, ask questions etc.

    Good Luck

  • Am glad I found this site because just seeing that others are having anxiety as a side effect to Topamax is reassuring – I hadn’t associated it with the medication I have been taking for migraines for about a year. I only was taking 65mg because that was all I felt I could tolerate – I felt I had lost enough IQ points at that point and couldn’t afford any more loss of concentration. Could put up with the tingling/ muscle pain, etc but this anxiety in the middle of the night is another thing. Am now in the process of reducing the dosage and will eventually stop taking it. My doctor had already talked about taking some vitamins instead and I’ve been too lazy to try it because it seemed too complicated but now will try anything else. My understanding is that anyone who experiences eye pain while taking Topamax should contact their doctor immediately because this could be a serious problem with this medication. By the way, I did lose 25 pounds as a bonus taking this since December……..just seemed to lose interest in eating a lot. Good luck to everyone.Diane

  • I would like to know if there are any withdrawel symptoms from going off topamax.I have to go off for a while because of my insurance and am very upset and scared.I already feel like i am losing itI take it for Bi-polarthanks LEE

  • Just started Topomax this week with Dilantin. Phasing out of Dilantin (I have Epilepsy) Had a grand mal last week. Can’t wait to see if this works for me.Ken

  • Just started Topomax this week with Dilantin. Phasing out of Dilantin (I have Epilepsy) Had a grand mal last week. Can’t wait to see if this works for me.Ken

  • I started taking topamax for migraines. I only lasted 3 weeks on it. The severe reaction I hadto the medication was unbelievable. I got a headache that lasted for the full time on the medication. Other side affects were: unable to concetrate, confusion, no coordination, blurred vision, tired/drowsiness, numbness in hands/feet,tongue also numb/tingly, dizziness, gums sensitive, hardly able to brush my teeth, vertigo, chills/shakes, vertigo, and insomnia.This drug almost did me in. The pain in my side is still there, my appetite has not returned. I guess I will take the migraines and TIA’s and hope there is something else out there.Glad it is working for some of you.

  • Hi everyone. I decided to share a post and update on my new medication. I think its important to share for people out there looking for information on personal experiences with meds (like me) It is so scary starting new medications. I just started Topomax today @ 25 mg. In a few days I increase to 50 mg a day. Not sure where it will lead from there. It is actually the only medication that will treat my binge eating/bulimia, my PTSD symptoms (the flashbacks and nightmares) help me sleep and also balance out the depression/anxiety. Oh yeah and hopefully I will lose more weight as well. I am very excited about taking this and I hope, hope hope I don’t experience any of the negative symptoms that some poor souls experienced above. For the person that ran out of topomax you should ask your physciatrist to get samples from the drug rep to ween you off. Never cold turkey off of anything, that can land you in the hospital. Well good luck to everyone and best wishes.

  • After about 8 months, I’ve finally decided that having migraines outweigh the side effects, so I have just weaned myself off this drug. I probably shouldn’t have gone down so quickly, but I had to get off of it! I was on 150mg that I took once a day only at night. By no means am I advising anyone to do this, but I was able to get off of this in three days. I went down to 100mg for two days, then 50mg for one day, and I feel different. My headaches have returned (not migraines yet), but just my tension headaches. I am still waiting to feel great and get my head out of the clouds! I have only been off of it now for about 24hrs, and I can’t wait to be able to taste soda and other things again! Does anyone know how long this will take?

    Like the others, I had tingling in the hands and feet, but only occasionally. My eyes would water alot. I would get double vision after waking up from a nap (this would go away after about 20-30min.). I never did see any weight loss šŸ™ (the one side effect I was waiting for). I also could never find the right words for things. My job requires me to constantly be on the ball and make presentations. This is impossible on Topamax. I, too, have felt like a complete idiot on a number of occasions. It’s strange, I’m hearing what people are saying, but not absorbing any of it. I have to ask people to repeat what they just said….many times!

    My main reason for getting off this drug is that my husband and I are now talking about starting a family, and after reading some the of the “topamax insert” info, I was incredibly alarmed to say the least. This drug was not tested on pregnant women, but on pregnant animals, mice, rabbits, etc….(even at low dosages) the result of their offspring resulted in many malformations….missing limbs, craniofacial defects, and many others relating to lack of bone development. SO BE CAREFUL OF PREGNANCY WHILE ON THIS DRUG!! I am not a doc, but just read this off the Topamax insert online. This was enough for me to say ENOUGH, I can just deal with my headaches. Good luck to all of you, trust me I know it’s hell to be miserable….I lose my vision with my migraines, of course at the worst possible time!

    Tammy

  • I just took my first dose of Topamax… very scared… I’m taking it for Bi-Polar manic….I’m also taking Paxil CR..and seroquel 50Mg… has anyone taken this combination????

  • I was on Topamax for 4 weeks. My experience was not good. I had burning, prickling, and tingling sensations in my hands, feet and face which I ended up with tremors in my hands in the end dropping things because I was shaking so badly. I also had unsteadiness, confusion, dizziness, slowness mentally, increased eye pressure, memory problems, menstrual changes(hope this does not offend anyone but the color of my menstrual blood was blackish dark red and lasted 8 days(important for other women it is a side effect of this medicine), menstrual pain(Cramps everyday of those 8 days), nervousness, speech or language problems, trouble concentrating and paying attention, chills, sore throat, lessening of sensations or perception (I didn’t even feel like my body was mine anymore), loss of appetite(I weighed 135lbs when I started and when I stopped after 4 weeks I weighed 122lbs), mood or mental changes, including aggression, agitation, apathy, irritability, decrease in sexual desire (mainly because my body was so alien to me, my sensations were not there and I mentally just didn’t care much about anything I had enjoyed), itching, lower back or side pain, ringing ears, troubled breathing (Started with getting winded going up the stairs, next if I spoke to fast I would be winded). I am a 28 yr old female, I was put on this medication for migraines. I have a boyfriend of 5 years and have 4 children I was not really aggitated I would go into full out rages. I feared for everyone around me and I had absolutely no control of what was happening to me and didn’t even know why it was happening. I am just grateful I went to my family doctor and he took me off it because the neuroligist was not concerned for my safety or my family’s safety. My family doctor knows me and when I came in he didn’t believe it was me we went over what I was feeling and the obvious things he could see and made the decision to take me off of it. I have only taken Fioricet and imitrex before and they worked but I was getting headaches too often and they do not want you to take the imitrex mor then 5 times a week and the fioricet can be addictive because it have a barbituate in it. I can tell you that I would rather live with the pain then take the chance of hurting my children, any of my loved ones or myself. My thinking was so unbelievably off the wall. I felt better quite quickly after stopping the medication and so far have not had any problems other then crying more then I have in my life, I am very sensitive but I would rather cry then be in a rage. I do understand that this medication can help people it is important for everyone to understand the risks and side effects so they know that they 1.) are not losing their minds suddenly. 2.) We may have medical problems but we do have choices in our doctors treatment for us and I believe that you should always be informed. I really wish that I checked into this medication more before I started it, I would have recognized the signs much faster.

  • I kinda laugh when I read some of these post . not funny but true I’ve been taking topamax 100mg 3x a day , almost 6 years every since it first came out in Jan 1999. few months ago I stopped my afternoon dose , so now I’m taking 200mg a day. I’m tired I have (daydream) momentsmy hands and feet go numb,ect.I’ve tried in the past to go off the drug but had terrible headaches , so I keep taking it .I take it for siezures so I deal with side efforts ,then a siezuresKelly

  • HEY im 19 and among drugs i take are Topamax Effexor and Respiradal. for toni- i took seroquel for about a few weeks in the hospital but i’m definitely doing well on the combo i’m on now though. I was able to replace the Seroquel actually with a lower dosage of Respiradal as my Antipsychotic (less-meds the better)For all that wake up each day and open a med cabinet to see only one pill container there that reads: “Topamax” on it, phew* consider yourselves lucky šŸ™‚ ….. my magical rainbow of capsules and tablets is such a shit mixture now i have no idea what side effect is from what. On the note of using Topamax for weight loss, i don’t have a problem with it. if your doctor prescribes it to you then why not– i mean it’s not as bad as going on that swan show or something, and actual weight loss pills are no worse for side effects either- so why not! power to ya! Basically side effects i have (note that i take other drugs though and am experiencing a post psychotic episode crash) are thinner hair, total lack of enthusiasm in everything, i am always cold, i have a slower memory- tests were done at the hospital, very inactive, eat barely anything but sugar and chocolate hah.DON’T BE SCARED OF TOPAMAX

    pam

  • I was on topamax for 5 days because of migraines. I took myself off because I could not stand the high anxiety(?). I felt like I could run around the block 10 times and not be tired. I was very high strung, I was talking a mile a minute. Like I was on speed. I also had memory loss. One of the reasons I took myself off was because I have a 2 year old daughter and I can’t take any chances with her. What if I forget to do something for her. I would never forgive myself. Topamax did help my headaches. However, they came back full force as soon as I stopped taking it. I know I was not on for very long and I’m sure I may sound like a wimp but I can’t take the chance. Does anyone know of anything else that might help with their migraines or headaches? Good luck to everyone and thanks for letting me read your comments.

  • I started taking topamax about a year ago. Major side effects included a twitching eye, which mostly occurred at night (thank God!) It would go on for hours at a time! I lost my appetite and managed to drop a few pounds. However, in the last several months I started developing severe joint pain. My doctor sent me to a Rheumatologist. Tests came out okay. Then, I started to have weird sensations in my feet (one foot mostly). It’s not totally numb, just lacking in sensation. Now, I’m experiencing it on one side of my tongue. I was prescribed topamax for a nerve impingement in my neck. I had a surgical procedure this week and the surgeon claims the foot numbness is not related to the topamax. (I didn’t mention the tongue sensation.) I’m not so sure I believe him after reviewing everyone’s comments. Thanks for sharing your thoughts.

  • I was on topamax for four years. I suffer from terrible migraines. I want to be off topamax incase i get pregnant. How long does it stay in your system? This I need to know. Since I’ve been off tompamax, I sat down and continued working on my novel which I haven’t touched in four years. I can focus now. I don’t get angry, but today I got a migraine. It’s been four days. So does that mean it’s out of my system? I take imitrex for my migraines now. I want my baby to be healthy as my husband and I are trying. I hope I didn’t permanently damage my genes from this drug. Tompamax puts you in a haze, but I know the pain of migraines, and it’s worth it to be in a haze. I dropped my weight down to 105 pounds, in four days my weight has gone back up to it’s regular 112 pounds, so i’m not worried about that. If you go off topamax, just keep the same eating habits and you won’t gain that much weight. My friends and family notice a calmness and like me better off the drug and so do I myself.Best of luck to all of you. If you know how long it stays in your system, please let me know.thanks

  • Hi. I was releived to see that someone else had actually weined themselves off of this med. I was at 25 mg 2X per day and went down to 25 mg at night. Last week I started taking it everyother night. I thought that i would do that for another week and then throw it away.The doc that prescribed it for me is not able to be reached. I just stopped taking all seven of the Rx’s that he prescribed for me and this is the only one other than Ephexor XR that i have to come off of yet. Mark, do you think that this will be safe enough? Thanks!

  • Hi, Kathryn!

    While I wish you all the best, I can’t dispense, recommend, or offer medical advice of any kind. Folks here share a lot about their own experiences, but any and all medical advice you receive should come from a doctor.

    Before starting or stopping any medication, I really do recommend you contact a doctor who can evaluate your situation in person!

    Hoping all the best for you,

    Mark

  • Does anyone not remember this drug is for epilepsy and it is a small miracle? Who cares about vanity weight loss. I’m talking about quality of life for epileptics. I happen to take it for periphal neuropathy and it is wonderous as well. The side effects are well worth being pain-free for once. I cannot stress how this drug has improved MY quality of life for sure!!!!

  • Hi I have been on Topomax for about 2 years for bipolar/ocd and post tramatic stress. I am also taking zoloft. Originally my doctor put me on Lithium the side affects of the Lithium were horrible. The reason I checked this site out was to find out what to expect as far as withdrawel symtoms would be going off Topomax cold turkey. I do not want to go off of Topomax it has taken 3 years of experiment and theraphy to get the right drug combination and has helped me very much. I do not have the money to pay for my medication. Can anyone give me a hint? I do not have the money to find out from my doctor. Thank you

  • Hello… I enjoyed this site alot was said… I am taking Topamax 200mg in the AM 200 mg in the PM for Bi-Polar type 2… I have been taking this for 3 years… I have lost 187 pounds taking topax as well, which was good for me due to all the weight I gained taking every other drug under the sun. I gained 70 pounds in 1 month on Depakote! I can agree that soda doesn’t taste very well, so I drink water… not so bad… I too get tingling sensations in my hands and feet that comes and goes… I am cold alot but that my be due to my weight loss, I have had blurring vision after a nap… BUT what I have gone through on other medicines Topamax for my Bi-polar has given me back part of my life… I had moved and was without Topamax for about 5 months I was a MESS!!!! I gained 50 POUNDS! and could barely function. I think that this drug has it’s pros and cons to which you are using it for. people who use it for Psych meds, tend to have been through alot with side effects… I say with anything if you pay attention to your body… listen to your body and you will know if it is right for you or not… Good Luck to everyone who has to consider taking a medication for what ever reason… You are doing right by knowledging yourself on it… happy holidays!

  • my child has been on dilantin for the majority of his life , and seizure were controlled up until nov 2004. he has been having clsuters of seizure since nov 2004. his doctors have just added topmax 25mg a day. he also takes dilantin and keppra. he has not had a seizure but he has only been on for a week , i have not seen any side effects yet, but i was hesitant about giving him the medication because i had read about the awful side effects that could occr. i decide to try the medication beause of the many seizures and hospitalizations he has had to endure. he is only 11 years old, can anyone comment on the side effects topamax has in children.

  • I started taking Topamax 50mg 2x per day in the summer of ’05 for metabolic problems. I lost 14lbs over 2months on a strict low carb dr. ordered diet from my dr. My weigh loss stopped. I continued the meds with no results and my dr. tells me he has not seen any of his patients lose more than 15lbs on topamax? Is this correct? I have now started Paxil (for anxiety)with the Topamax and need to know if anyone has experienced any weight loss or gain from the combination?

  • Has anyone had trouble with hair loss after taking Topamax. I’m losing a excessive amount of hair and did loss about 15 lbs. in a month.

  • topamax has ruined my life. i am happy to read some of your success stories with the medecine but i don’t have one to tell, i started taking 100 mg. of topamax for extremely painful migranes, in which case i eventually had to have a spinal tap because i had excess spinal fluid on my brain, well at first with the medecine all was fine and dandy i felt on cloud nine and the things took a turn for the worse, i began to have these horrible mood swings and, i was extremely emotional all the time, and even had sucidal thoughts, and have even had weight gain, and memory loss, i forget things sometimes, it’s horrible— i am still currently on the medicne and i feel like i am addicted but i am currently also going to try to take myself off, i just don’t know about this medecine i think that it makes you some sort of mean carbon copy of yourself becasuse that’s what i feel like i turn into sometimes and those close to me can tell somethings wrong, i hope those of you with problems like mine get yours resolved too — GOD BLESS

  • I need to add to this discussion about Topamax because I have to warn people — this is a DANGEROUS drug. I was on it for 3 years for my bulimia. I loved it at first – I had never been so free of my disease and finally felt like I had a life. I experienced confusion and short term memory loss but I felt the benefits outweighed these side effects. But, after a year,(enough time to level off and get used to side effects) the side effects seemed to get worse and I started losing ALOT of my hair (in a matter of a month). The hair I didn’t lose, got stiff. My personality started to change significantly; I was easily agitated and people were noticing. My job was affected and my relationships were suffering not to mention that my once thick curly hair had turned to a few pieces of straw. The good news is that I have been off of the topamax for 6 months and my hair is starting to come back in…I think that’s the only good news. The bad news doesn’t seem to be something I can live with — my memory loss and confusion seem PERMANENT (I forget little details and facts ‘easily).’ I still enter the ‘fog’ sometimes. My personality seems to still be sligthly irritated and anxious. I was never like this. I am only 33 years old (so I can’t be going senile). PLEASE LOOK FOR OTHER OPTIONS BEFORE YOU START THIS DRUG. IT WAS NOT WORTH IT.

    • @TORI

      Hello,
      Oh my god. Hi Tori. I know you wrote this years ago, but I feel as if you and I have the same story. My heart goes out to you and I wish we could talk. I am in the same boat. We were in the same boat at different times, in separate seas. I took Topamax, too, for an eating disorder. I have always been slightly and when I say slight I mean slight, slightly anxious and leaned toward depressive tendencies- I had bulimia and anorexia, and was prescribed this drug 4 years ago, as I was bingeing and purging up to 6 or 7 times a day. I took this, and it was a miracle, I simply stopped. I didn’t want to anymore, and I no longer had the feelings that accompanied it, the anguish or obsessiveness. Yet, a year in, I became irritable, and started having nightmares, insomnia, and becoming disoriented. I have not yet started full blown bulimia but I am anorexic again to cope with these suicidal, anxious and confusing thoughts that have begun perpetuating my psyche at a full time rate sense 2 years ago. I have zero ability to cope with stress, and my reactions are volatile. I am still on 100 mg. I want to go off, and top make matters worse, I have lost most of the hair on my head, including eyebrows and eyelashes. It plagues me. If I felt comfortable going out in public looking like a mannequin I would, but instead I have become isolated, socially anxious and my mind feels extremely foggy and debilitated. This drug is toxic toxic. I will stay away from AED forever. I know this drug will be taken off the market in say 20 years because it is horrid in everyday, yet for some reason people are still being prescribed it, and I was one of the unfortunate ones to be on it. Tori, you say hair loss eventually stops and your hair grows back? It is now 9 years later, have you noticed your mood or memory improving at all? Thanks.

  • HI! I started taking Topomax 3 or so yrs ago. This drug as you see by the posting is used to treat various disorders. I use it for Epilepsy as it was initially manufactured for.I do have some side effects but i take 200mg in the morning & 200mg @ bedtime.

    My side effects are upset stomach (which in turn i take protonix for)I also notice a change in (mental clarity & alertness) “hey folks i noticed that on all of the other eliptic meds i took.”

    I noticed maybe a few shedding of unwanted pounds 10 pounds or so.

    I’m 5’4 & weigh 140 I guess i could still lose a few more but excercise & eating right is my key role not this drug!!!!!

    also the big side effect is dry mouth. i feel like i can’t drink enough water.

    Tingling sensation that comes & goes in the finger tips & the end of my nose.

    All in all this is a great epilepsy drug.

    A lot of the other ones make you grow dark facial hair, make you feel drunk & stoopory ?sp when you start them. cause major headaches.

    My last thoughts are if you dont need this drug other than for the listed intended uses & if your DR does Prescribe it. Give it a chance @ least 2-3 weeks to let it get theraputic levels.

    The person that did write this is a LPN. So the Health Info is somewhat informative.

  • i was on topomax from jan 2004 to july of 2006 for migraines. the side effects of not remembering people’s names, not remembering people’s stories, not remembering simple words like “cat” and having no concentration at home or work were annoying but it was something i was willing to deal with for the relief the drug brought as i had debilitating migraines about 4-5 days a week. the migraines went down to about 8 a month!!!! but the side effects…. the day i decided it was enough was the day i was driving with my boyfriend and went over a median into the oncoming cars’ lane. a car swirved to avoid me, my boyfriend screamed, i jumped back over the median and when he told me what i had just done, i had absolutely no recollection. since i’ve been off, i still have the lack of concentration. my eyes “skip” when i’m reading. i still have the memory loss but i think it’s because it’s still in my system. another side effect was that i was never hungry. i had to force myself to eat but made sure i ate 3 meals a day. i went from 125lbs to 105lbs. in the first week that i was off the pills i jumped to 114lbs. i gained 9 pounds from eating the same way i did while i was on the pills…. this is from eating 3 times a day, a healthy amount of food.

  • Here’s a positive result from Topamax at least in the short term. I’ve been taking it for migraine prevention, titrating up very slowly over three months at 12.5 mg at a time to 75 mg a day. The migraines were disabling, coming once or twice a week lasting three days. The pain and the brain fog kept me at a minimum function at work – if my staff hadn’t covered for me I would have lost my job. I wasn’t concerned that meds would cause memory problems because the problem was already there with the migraines. My neurologist suggested adding Topamax to the Gabapentin I was taking after six months of some improvement on Gabapentin.I have been diagnosed in the past with PTSD and suspected bipolar hmmm… I was cautious but curious about Topamax’s effect on temporal lobe activity. Don’t mess with your brain if you don’t need to, right? But I’ve been overcoming PTSD symptoms all my life.Now on 75 mg the migraines are under control. Sweet relief! Best of all, my sense of humor is back. I feel like myself again, better than I have in three years since the migraines started. My temper is fine, no anxiety, no disassociation, no space-outs. No problem with word recall or short term memory (OK I’m middle aged some of that is expected). I’m past menopause and on the patch so no problem there. Granted coffee and soda taste like shit but Starbucks doesn’t need my habit. Yes pins and needle in my feet, and dry mouth. I can live with it.Topamax does help prevent my migraines and an added bonus is a happier, calmer me. I suspect the drug has a beneficial effect on me because my brain has the biochemistry of PTSD. Other people seem to have horrible side effects relating to brain chemistry.

    This is a drug with serious effects on your brain, for heaven’s sake don’t take it without serious consideration.

  • I have been taking Topamax for approximately 7 months. It was precscribed to me for migrane prevention. I am only taking 75 mg once a day. After the initial adjustment to the medication I thought I was doing fine, and really have had no significant headaches since. Also have lost about 15 pounds, which was great. However, shortly after starting the medication, I developed persistent upper right quadrant pain – kind in and behind the right ribcage area, clear through to my back. I have had every test possible to rule out liver, kidney, gallbladder, even had MRI’s to check for disc herniations – had blood work, etc, – all norm. But now 6 to 7 months later, I still have this pain, which is quite significant and live altering. The doctors do not seem to make the correlation to Topamax, but it seems awfully coincidental. I also do feel a depressed and unmotivated, but I associated that with hurting all the time (as opposed to a side effect of the medication). Have any of you ever heard of the upper right quandrant pain of this nature being a side effect?

  • I have been suffering from migraines for over six yrs. It started out only being once a month true hormonal migraine. Now I get them about once a week sometimes more. I currently take Replax when I have one. It works pretty good. But I don’t want to take them all the time. I only get 6 pills that has to last a month. My Dr. wants me to try Topamax and I was going to then I read in a magazine the 2 pgs of side effects and I got scared! So I have been doing so much research and talking to people to see about any thing else that may help. I have tired several natural pills and even worked with a natural Dr. who created these drops to help balance me… ect none have worked. And I do feel like these migraines are really effecting my life work, social life, love life. I just don’t ever feel free to not worry about something triggering a migraine. SO many things do for me it’s so hard! I am only 26 yrs and I just can not imagine feeling like this for the rest of my life. When I feel good it’s like the greatest gift! People just don’t understand that don’t get these how horrible they are! I even worry about having a kid someday because I can’t really stand any loud noises even that will trigger one sometimes. Well my question if for the people who said this has changed their life and are very happy with Topamax are you still happy with it??? Anyone been on it for a year or more for migraines and still happy? It’s nice to know I am not alone in this.Thanks

  • I’ve been on Topamax for about 3 years for migraine prevention. My nerologist put me on it after several failed attempts with other ‘preventative meds’. Before Topamax, I had 20-25 Migraines a month. With Topamax, I’m down to 1-2 per month. I have found that the side effects from this drug can be greatly alleviated by staying well hydrated (non-caffinated, non-carbonated). Unfortunatly, this drug has completely changed me personality wise. I am short tempered, depressed, and I am no longer able to deal with this particualr side effect. I’ve been coping with it for 3 years because of the relief I found from the migraines. It seems like the longer I take the Topamax, the worse it gets. But I can’t do it anymore. I’m snapping at my family and I have crying jags for stupid reasons. I began titrating off Topamax last night. I will seek an alternative to this med…I can’t afford to lose my life. I hope that this lets someone else know that they’er not alone with this side effect…it IS real.~RC

  • I have had constant eye headaches for more than 10 years. The neurologist said maybe medication would help. Last year I went on Neurontin and had to quit. 4 weeks ago Topamax. I was taking this along with Zotec for congestion and sore throat pain. The Topamax intensified sore throat pain. My glands were swollen, almost couldn’t swallow. Too much meds drying me out. I thought it was Topamax. My throat was better without it.

  • SOMEONE HAS LOST A CONSIDERABLE AMOUNT OF WEIGHT ON TOPOMAX. I WOULD LIKE TO HAVE ME DR. PRESCRIBE IT FOR THESE UNWANTED 20 LBS THAT I CAN’T GET RID OF. IS IT WORTH THE SIDE EFFECTS?

  • I have started Topomax three weeks ago and I have been really sick with stomach cramps and diarreah, so severe that I ended up in the emergency ward last saturday. Had every kind of test performed and they all ended up negative. Went to a gastroenterologist and I am scheduled for an endoscopy next week. I started on 25mg of Topomax and today I started on 75mg. My stomach hurts really bad and I suffer from lack of sleep. I have had migraines for more than 20 years. I take Indural as a beta blocker and Imitrex when I do get the migraine. Sometimes I am fine for a couple of weeks and sometimes I get them three days in the row. They have just ruined my life. I am considering getting off Topomax. The side effects do not seem worth it. I am so glad I have found this site. This has been three weeks of complete misery and depression.

  • I’m glad to see that I’m not the only one with s/e’s from Topamax. I take it for migraine prevention. I still get the migraines, just not as severe and I take Imitrex to get me through the pain. I have really struggled to decide to go off the med though. My job requires me to be completely focused and precise and I’m just tired of feeling STUPID for lack of a better word!! Which is funny to say because I’m tired of being in mid sentence and not being able to think of a word that I should know!! I have had migraines for years and have been on so many preventatives that just didn’t work. I can’t seem to find one that will completely eliminate them. Mine are worse around my cycle. Anybody out there like this? I am leaning toward going off the Topamax.

  • I’ve been taking Topamax for about 6 months to treat simple partial seizures and nueropathic pain caused by them. I was in SEVERE pain and passing out on a daily basis when an EEG confirmed I was having seizures in my left hemisphere. I began Taking Topamax to see if it would control my seizures. My doctor and I weren’t really sure how I would react, because my seizures were causing unique symptoms.

    When I first started taking the Topmax I felt completely doped up. Over the course of a month I worked my way up to taking 100 mg a day. for the first 3 weeks I lived in a haze. I didn’t really eat that much….or talk that much…and I had problems with my hair falling out. However….in that month all of my epilepsy symptoms stopped. I began taking a biotin supplement daily that stopped the hair loss and scalp itching and by the end of the first month I had successfully adjusted to my meds and I was no longer experiencing any side effects except for the occasional tingly foot if I sat with my legs crossed too long.

    I have this week began increasin my meds again to get up to 200mg a day and have began getting foggy again and began getting easily chilled….which is very reminiscent of when I originally began taking topamax, however I have faith that 4 weeks from now when I get to the full dosage I will be fine. I think the key is staying on the medication long enough to allow the body to adjust, and slowly, week by week building up to the full dosage.

    I would really encourage even those experiencing some of the same side effects I expereinced to give it a try for at least a month to give your body a chance to adjust to the medication. I’m 20 years old….and I was in pain EVERYDAY…and I am SO glad I stuck through that month of feeling doped up..because I almost didn’t!! I thought it wasn’t worth it. But everything worked itself out and EVERYTHING was worth it!

  • Topamax for OCD:My wife has severe “re-checking” symptoms.Here’s what she’s experienced during her Topamax dosages:

    Up to 200mg:no side effects at all, no weight loss. No OCD symptom relief. Helped depression.

    200-225mg: Remission of most OCD symptoms for one wonderful day, then back back to previous condition. Good mood-no depression. Very mild temporary vocabulary/ slip of the tongue effects.

    250-350mg: Still no side-effects, OCD mildly improved. Mild weight loss.

    375mg: BOOM! One week of OCD remission. Not checking as much, starting to forget obsessive thoughts (great)! More weight loss.

    400mg: Ouch–OCD/anxiety/checking much worse. Rage/short fuse/ fragile mood developing. Stereotyped behavior. Locking up alot with OCD. Losing a pound a day.

    Anyhow, side effects were few, just be careful not to overshoot dosages too fast–takes about eight weeks for a given dose to help OCD. I would guess the best dose for a 130 lbs woman with OCD would be 225 to 350mg for six months at least.

  • I have been on Topamax for about a year now and it has been wonderful for me. I am on it to help mood swings. I have become a completely different person since i have been on tompamax and not only have my moods become 100 percent better, i have lost 65 pounds with it. The weight loss eventually stops and I did loose hair but the hair loss stopped. My hair did not all fall out, just a little of it but my hair is long and healthy. My weight is maintained at 115lbs now and my moods are wonderful. Topamax has worked wonders for me.

  • I have been on topamax for migraines 100mg @ night. I’ve experienced the tingling in my hands and feet and some foginess in the mornings. However, I have also since taking the drug almost 3 months ago have had many different disturbing nightmares…has anyone else experienced this?

  • Hi there..im so confused…ive spent a few hours today reading thru posts tryign to get information about Topomax. I have had an eating disorder – bulemia/binge eating for about 10 years adn right now i am in an outpatient 3x a week program. i am also on 75 mg of Zoloft. It was recommended to me to look into trying Topomax (by the psychiatrist where i am getting ED treatment). I’m just trying to get a good sense on if its worth it to try because in terms of the disorder, i have strong urges to binge and purge at night – every night , and i have not been able to stop…in ten years…so yeah. im lookign for answers and advice….all this stuff is scary and i was super reluctant to even try to zoloft b/c i heard that you could gain weight from it…any thoughts/comments/advice?

  • girl who is confused.I wouldn’t think twice about trying it. I’ve been on Topamax now for 2 1/2 weeks. I have had really bad Binge eating problems for a long long time and guess what? I no longer have them. I know that this is hard to believe but it is true. Topamax completely takes away your hunger. I gained weight when my thyroid went bad my doctor prescribed Topamax to help control the amount of calories I was eating. Hoping I would lose weight. I had a really bad habbit of going to bed then waking up several times at night and eating. I would obsess about different foods so I know what your going through. I say at least give it a try and stay on it for a good four weeks allowing your body to adjust to it. Most people give up within the first couple of weeks. Start on a low dose a increase very slowly. My doctor started me on 25mg the first week then the next week 50mg the the third week 75mg. I have lost weight already and lost the urge to eat all the time. It’s great. I would try Prozac It’s one of the few antidepressants that also curb your appetite. Most of the others make you gain weight. I am a nurse and have alot of expierence with this type of stuff. Talk to your doctor. Don’t take Zoloft if at all possible. Prozac is the best way to go. I seen many people lose weight on it. Let me know how you do.

  • I stopped taking Topamax several months ago, but the side affects of word finding , memory loss ect.. are still lingering . I was wondering if Tori who posted on 8-20-06 was still experiencing these problems or if anyone else is ?

  • hi, this is for the girl who is confused with the ED & for Debbie. to the girl with the ED –the immediate effect of topamax is wonderful. i used to binge/purge 6x/day or more and i’ve been in the disease for over 15 yrs. topamax literally ‘took away’ the problem within 1 wk..but i ultimately had to stay at a dosage of 350mg. i have to say that what i suffered in terms of hair loss, memory malfunction, personality change, and confusion eventually wasn’t worth the ‘temporary’ relief. first of all, after about a yr, i leveled off so i became symptomatic again – nopt as bad but bulimia was there again. also, as soon as i went off the meds, the urges came back 100% and i am struggling again. for debbie-i feel there is still permanent damage- while i am not as confused as i was on the drug, i am still not a 100% – it’s been over a year so the drug should be out of my system. i still get stupid and forgetful when i shouldn’t. it’s embarrassing and difficult to work sometimes. i have little concentration and struggle to focus. in hindsight, i would have never used this drug – or would have ‘at least’ stayed at a low dosage for a longer period of time.

  • I was on topamax for about 4 mos for terrible migraines and loved it to start with …It took a few days to get over the tingle in my feet and the taste of pop was now like metal….but I loved not have headaches!…THEN!!!!! I realized I started feeling odd while working out ..and doing things around the house and I realized I have STOPPED SWEATING! I felt like I was overheating!..Its 90 outside and I feel like I am standing in front of a camp fire 24/7 and to the touch I feel like I have a fever! THEN I noticed my LONG hair was falling out BADLY!!!…so I STOPPED it at once!…been off of it for about a week now and today I have the worst headache ;(

  • I have been on 400mg of Topomax for almost a year & a half now & for me it really was a life saver. I was morbidly obese, an insulin-dependent type-II diabetic & my cholesterol levels were dangerously high (I am genetically predisposed to high levels due to a blood disorder). I was so heavy that I could barely walk because of osteoarthritis in my knees & I had tried several different meds for my bipolar disorder with little success. Within the first year of using Topomax, I lost 130 lbs, came off of insulin (am now diet controlled), lowered my cholesterol levels to almost normal levels, and I was not only walking everywhere but could RUN up a flight of stairs with a 20 lb backpack on my back PAINFREE! My mood was not only stable but I was so freakin’ happy all the time, that it was almost sickening! But now, after almost 1 1/2 yrs of being on the Topomax, something seems to be going wrong…I’ve gained back 30 lbs, I feel depressed almost all of the time (I rarely EVER have “highs” anymore), and what used to be just slight chills as a side-effect has now become a chronic condition…when I get exposed to ANY cold temperatures, my body temperature actually drops…so far it has dropped as low as 35.5 C. (for any of you experiencing chills as a side effect, I would suggest that you keep a temperature diary for your doctor. Use a digital thermometer as it is the most accurate. I have asked to have a blood test done on my COLD AGGLUTANINS (apparently regulates body temp or something). Anyway, this all really sucks…I was so happy for the past year or so but now I don’t know what I should do…oh, yes and the hair loss thing. I can relate to that. My hair is so thin now that I can barely keep a ponytail holder in it. I’m so frustrated…

  • I’m like bert00 who posted May 8. I’m trying to come off my topomax and having bad stomach pain and naseau. I also can’t get to sleep. I was on topomax for about a year for bipolar disorder and I didn’t lose much weight, maybe a few pounds. I also was very “dumbed down”. I thought it was okay until I started having bad stomach pain and also I just couldn’t take the thirst problem. That’s why I am just trying to get off it.

  • I took topamax for 2 months. I’ve suffered the most extreme migrains for about the past 15 years. Finally!! a medication that lets me live life again. Ok, side effects.. i had to start taking neurontin to control the pins and needles in my hands, legs and head. that didnt work. they light flashes in my eyes.. i couldnt drink carbonated beverages, they tasted horrible.. my sex life suffered, i became irrateable. so, i stopped taking the topamax.. i figured only 2 months i should be ok, but was i wrong to think this? i havent had any in 7 days, for the past 3 days my legs hurt so bad i can barely move. its like when you over work your legs in a work out and the next day they are all tensed up and sore.. but x’s that by say 10. has anyone else ever had this happen when stopping topamax?

  • Scared to death. Started topamax one week ago. Woke up, eyesight is gone to a complete blur with extreme watery eyes, light sensitivity, and double vision. My eyesight was only a neg. 1 and all in 24 hours went to a neg.4.25. Stopped topamax cold turkey and after 48 hours no change. I am scared to death that my vision will not return to normal. If anyone has ever experienced anything like this please post and let me know if this could be permanentand if not, how long will it take for this to pass? On the flip side of this, my daughter has been on this for the same reason, miagrains, and she doing fine with it.

  • to Jennifer: I am on topamax and have the same problems as your husband. I often feel depressed and hopeless, crying an average of 3-4 times a day for almost no reason (very unusual for me). My vision has become very blurry even with my contact lenses, sometimes I’m afraid to drive. I’m often sleepy and am having some memory loss and problems spelling or remembering the right words for things (I learned to read at 3 years old and always excelled in grammar and such). I have frequent violent mood swings and get angry at my husband for no reason. It’s worse than being on birth control. My migraines, which used to occur 3 to 4 times a day and would sometimes last 2 or 3 days at a time, are almost completely gone (I’m taking 100mg a night)but I assure you it isn’t worth it. I’m stopping the topamax today and would advise your husband to do the same. I’ve been on the medicine for 3 months and the side effects have not stopped. My vision has only gotten worse. Best of luck. By the way, does anyone know if there are any strict guidelines for quitting topamax? Do you have to cut your dose in half for a week or anything or can you just stop immediately altogether?

  • FOLLOW-UP TO JUNE 19th POST. I went back to my doctor and all of my blood tests came back normal (including cold agglutinins) & screening for Lupis. So, I told him about how I have been reading comments on the i-net written by DOZENS of other people on Topamax & how they are experiencing symptoms & side effects that seem to be just like mine! Well, apparently, after 2 1/2 yrs of being on 400 mg/day of Topamax for a mood disorder (which was not it’s original intended use), I may have developed a rare but serious Metabolic Disorder. Now they are trying to wean me off of the med by 100 mgs every 30 days but I feel like CRAP, I have SEVERE joint and muscle pain (especially in my legs!) & talk about being IRRITABLE!! Somedays I feel like I could just about choke someone! So, today I am going back to see the doc to tell him to lower the dose quicker (every 2 wks?) so I can get this over with faster. I don’t care if he has to hospitalize me while I go through the process to keep me safe. If something doesn’t change, I’m going to lose my job, destroy my marriage or hurt somebody! This is freakin’ scary…

  • I took Topamax for about seven weeks (for migraines), and have now been off of it for about two and a half months. However, it seems like I’m still getting some of the side effects -difficulty concentrating, reading, etc. Has anyone else had a similar experience after quitting the drug? Has Debbie (posted on 8/30/07) had any improvement?

  • Follow-up from July 6th: BE CAREFUL when you stop taking this drug! I went on 1/2 a pill a night for a week, then 1/2 a pill every other night for a week (originally was on 100mg a night), 2 days after I stopped it altogether I had a seizure (never had one before, it was quite scary) and went to the ER, who said they could not predict if or when another would occur. I have had an increase of those tingly feelings in my arms and legs, although my migraines have not fully come back in yet. Also having some lightheadedness and am extremely tired all the time. Consult your DR before going off this–I would have, but my neurologist is on medical leave for breast cancer…this drug is no joke!

  • Like most of you, I’m on Topamax also. I’ve no side affects from this prescription 100 mg., although I’ve lost a great amount of weight. I’m so greatful not to have experience any of the above results. Marsha – 8-1-07

  • Like most of you, I’m on Topamax also. I’ve no side affects from this prescription 100 mg., although I’ve lost a great amount of weight. I’m so greatful not to have experience any of the above results. Marsha – 8-1-07

  • I am epileptic and have been on Topamax for over two years. The only reason I’m on it is because I’m uninsured and getting it through the pharmaceutical company. I have been trying desperately to get off it and get on another anti-convulsant. This drug is getting pimped by the health care industry. My doctor had propoganda all over her office. I wanted to go on Keppra but she was persistent about the Topamax. Said she would give me samples and I wouldn’t need to worry about the copay (I had insurance when I was initially on it). She also used the “you will lose weight” side effect to pursuade me to go on it. Guess what?

    I didn’t lose any weight. I did however experience the following side effects:

    InsomniaMental debilitation, memory loss, I am stupid as can be now because of this drug. I have been on job interviews and literally stared off into space searching for words when asked questions. I couldn’t respond.Severe headachesEye paininability to sweat. I would go hiking in the hills and would pant. My friends would be afraid I would pass out. This therefore lessoned my excursions to the gym. I actually GAINED weight from this friggin’ drug!pins and needles sensation in my legs.foot and leg crampssevere menstrual cycles where I laid in bed the first couple of days of my cycle.

    I haven’t had a steady job since shortly after I went on the medication. My doctor prescribed Exelon which is what they give to people with dementia and Alzheimer’s. I guess that seemed like a more practical solution than helping me get on a patient assistant program with another pharmaceutical company for another anti-convulsant.

    I urge anyone considering this drug to reconsider. Some people have no problem on it but others as I have found through internet research have equally adverse experience on this evil drug as me.

    Be glad you are off it. I wish it was so simple to just not take it. Unfortunately for me, if I don’t take it, I’ll have a seizure. I am stuck on this medicine that has debilitated my quality of life and I cannot get off it. It’s like a terrible nightmare that I cannot wake up from.

  • Been taking Topamax for three weeks now. My Dr. put me on it to lose weight. I don’t know how much I’ve lost but I can tell I’m not as hungry as I used to be. Started out on 50mg. for two weeks now on 100mg.s for two weeks. I imagine he will keep bumping me up. But, at night time I get this horrible pain in my right hand and lower arm. It feels like someone is hammering nails in my knuckles and setting them on fire!!! It has to be the topamax.? Any one ever have this? Please help! Thank you!!

  • Yes, welcome to the wonderful world of the topamax.

    My pain was in my right foot. I would rub calypso lotion on it which helped a little bit.

    If you don’t have to take this medicine, don’t. It’s toxic.

    I could get this medicine for free for my seizures or…I could get further in debt to charge another anti-convulsant. I chose the latter. I have learned the hard way what a toxic, dangerous drug this is. It will take me almost two months to wean off it because I could have a seizure if I come off it too fast; so now I’m on 2 anti-convulsants.

  • I’ve been taking only 25mg of topamax for 6 weeks. The side effects have been horrible so I’m afraid to increase the dosage. Every day for the first 2 weeks I wanted to quit but I kept thinking wait and give my body a chance to adjust. I have been the most moody, tired, aggitated, meanest, miserable person for the past 6 weeks – I don’t know what to do. I haven’t had any migraines though. I don’t know what is worse the head pain or all of these side effects and acting like a different person. I’ve even gained a few pounds because my stomach hurts and I’m trying to sooth it with comfort foods.Very frustrated.LL

  • Thank You for your replies. The arm pain is finally gone now I have a lump like burning sensatin in my throat when I swallow!? What in the world is this?? I’m losing weight but my God who wouldn’t feeling this bad!! Any comments would be so appreciated! I don’t know about my mood because I’m already feeling low with a break -up just happening!!

  • Hello Mark,

    There was an off label study about the effect of Topamax on scars. I was hoping you mind answering if, during your time taking Topamax, you noticed any improvement on any scar you may have?

    Thank you! A

  • I had a sore throat for the duration of the time I was on topamax. I went to the doctors and it was diagnosed as sinus problems but that when I started looking into the (many) side effects, surprise! sinus problems are one of them. I was put on Topamax the year my dad died, also my mother had massive brain surgery and almost died 3 months after my dad passed. I was never able to go through grieving process and recover like normal person becasue the topamax caused so much hell in my life. I suffered severe depression and eye pain (went to opthalmologist who said it was herpes eye, then cornea erosion then said wait, we’re baffled, it’s neither. it’s a myserious virus that mimics herpes eye and corneal erosion, then when my life was in the tioilet and i had to leave california go to florida and live w/ my mother (hoping to find org to help me off topamax since i was uninsured) eye problems returned, after getting in debt hundreds and hundreds of dollares to get symptoms treated. i have read many testimonials from people who have had eye problems ranging from pain (what i have) to blindness to glaucoma.

    But the mental deterioration, short term memory loss is the worse.

    I’m just telling you, if you can get off this medication, get off it now. I was stuck on it for a long time because it was the only AED my doctor would help me get for free.

  • And i have a big scar from when I was on topamax that is just as pronounced as ever.

    It’s on my wrist.

    I’ll let you figure out where that came from.

    FYI, don’t have a history of depression pre-Topamax

  • Topomax..ugh…it has good and bad points to it. I took only a very small dosage of it for 9 months and then I came off it and tried other meds.

    I was falsely diagnosed bipolar II and ADHD, so I was given this anti-convulsant to slow down the busy thoughts in my brain.

    ALL the side-effects that have been mentioned here, I have gone through, PLUS, now that I’ve been off this med for about 2 years, I have NO SEX DRIVE WHATSOEVER, I hate being touched on any intimate part of my body, and my husband is the one with depression issues because of this.

    Is there any way to get the sex drive back?Please?

    ~

  • I have been on topamax since october of 2006. After three months I noticed my hair was falling out. The dr. had nothing to say about it. I have been off of it for a week. Does anyone know how long before my hair stops falling out. My 4 year old told me I had a bald spot yesterday.

  • I just recently went off topomax after 2 yrs, because i was slurring my words and always felt in a fog. I also lost all of my sex drive. (feel nothing) can i get this back?? also since i’ve been off which has only been a week my body is having flu like symptoms, my knees hurt, arms, etc. is this normal? Please help??

  • I have been on topomax for 3 years for migraines…I am getting married and want to come off of this drug. I have three weeks till my wedding, should I wait till after the honeymoon? or start now?

  • THIS IS TO JIM AND TORI OR ANYONE ELSE WHO IS STILL HAVING SIDE EFFECTS AFTER STOPPING TOPAMAX.I STOPPED THE MEDICATION IN APRIL 2007 AFTER HAVING BEEN ON IT FOR NEARLY A YEAR.MY DOCTOR PUT ME ON DIFFERENT MEDICATIONS TO HELP WITH SIDE EFFECTS OF GOING OFF TOPAMAX AND WELLBUTRIN .I WAS GIVEN THE TOPAMAX BECAUSE THE WELLBUTRIN CAUSED MY MIGRAINES TO INCREASE. IT DID HELP WITH THE MIGRAINES BUT IT TOOK MONTHS FOR ME TO FIGURE OUT THE TOPAMAX WAS CAUSING ALL OF THE OTHER PROBLEMS I WAS HAVING.I AM JUST STARTING TO FEEL BETTER. I HAVE BEEN OFF ALL MEDS. SINCE MAY 2007 AND I AM STILL HAVING SIDE EFFECTS . IF I HAD TO GIVE A PERCENTAGE OF I HOW I FUNCTIONED ON TOPAMAX AND OFF OF IT I WOULD HAVE TO SAY 30%-40% ON IT AND 60%-70% OFF IT. I WAS SO ILL BY THE TIME I STOPPED IT .(I HAD LOST SO MUCH WEIGHT A SIZE TWO WAS TOO BIG,LOST OVER HALF MY HAIR,COULD NOT DRIVE MY CAR OR COOK SAFELY ,MY MEMORY AND THOUGHT PROCESS WERE EXTREMELY BAD, ALSO MY PERSONALITY CHANGED)TODAY I AM STILL STRUGGLING WITH MEMORY PROBLEMS AND MY SLOW THOUGHT PROCESS.I HAVE A LOT OF TROUBLE WITH SPELLING AND USING THE RIGHT WORDS IN SPEECH.I WAS GOOD AT MATH , REMEMBERING DATES ,PHONE NUMBERS, ECT.BEFORE BUT NOT ANY MORE .THIS I GUESS IS WHAT IS THE SCARIEST PART BECAUSE I AM BEGINNING TO THINK THAT THESE PROBLEMS MAY BE PERMANENT.I HAVE FOUND WAYS TO ADAPT AND HIDE WHAT IS GOING ON SO I DO NOT LOOK LIKE A FOOL MOST OF THE TIME WHEN TALKING TO SOMEONE.I DRIVE BUT I REHEARSE IN MY MIND ROUTE I WILL BE GOING.I DON’T TALK TO ANYONE OR LISTEN TO THE RADIO.I CAN’T HANDLE THE DISTRACTION AND DRIVE.MY DAUGHTER GAVE ME A LIST OF QUESTIONS TO ASK MYSELF WHILE I AM DRIVING TO KEEP ME FOCUSED.I HAVE FOUND THIS TO BE HELPFUL. IF I AM COOKING I DO NOT LEAVE THE KITCHEN . MY HAIR LOSS HAS STOPPED AND I HAVE GAINED WEIGHT. I FEEL LIKE MY PERSONALITY AND WHO I AM NOW IS NOT THE SAME AS BEFORE TAKING TOPAMAX.HAS ANYBODY ELSE COMPLAINED TO THE DRUG MANUFACTURE OR THEIR DOCTOR? MY DOCTOR SEEMED TO NOT WANT TO LISTEN TO ANY INFORMATION I HAD FOUND ONLINE.I MADE COPIES AND HE TOOK THEM RELUCTANTLY NEVER AGREEING TO LOOK AT THEM. HE SAID THE ONLY THING THAT WOULD BE RELEVANT TO HIM WAS IF IT WAS AN OFFICIAL DRUG STUDY THAT I HAD.HE SAID YOU COULD NOT GO BY ANYTHING THAT OTHER PEOPLE WERE POSTING ONLINE.I BELIEVE IF THERE ARE HUNDREDS OF PEOPLE IF NOT THOUSANDS OUT THERE HAVING THE SAME SIDE EFFECTS THERE HAS TO BE SOMETHING TO IT.I FEEL LIKE THE DRUG COMPANY NEEDS TO ANSWER THE QUESTIONS WE ALL HAVE ABOUT THIS DRUG.ARE THERE OTHERS LIKE ME WHO ARE CONTINUING TO HAVE SIDE EFFECTS? IF SO HOW LONG HAVE YOU BEEN OFF TOPAMAX? HAS ANYONE ELSE FOUND OTHER WAYS OF COPING WITH THE LINGERING SIDE EFFECTS? IS THERE A STUDY BEING DONE AT THIS TIME?

  • I have to say I have been on Topomax for three years for bipolar disorderi don’t like it I can’t focus I can’t think I can’t find words at times and there are times when I speak absolute gibberish. I have not lost any weight as a side effect.I have decided to wean off. i am going to go to Large amounts of omega three fish oils as I have read the research and the results are awesome. Although it takes about three months to feel the effects i will be weaning my self from Topomax and Lexapro in the process. I hate the thought of what these meds are doing to me.

  • I feel relieved that I found this site because now I know that I’m not crazy or alone. I have been on Topamax since October. I have suffered from migraines for over 15 years but they really increased after my thryoid surgery this past June. (Doctors say there is no correlation to the surgery.) I was having migraines every single day. Once in a great while, I would have one day without one but it was about 3 days a month only. Over the years, I’ve been on all the migraine meds out there. Some would take the edge off: Duradrin, Relpax, Imitrex, Zo..etc. and then nothing helped. The doctor game me vicodin to take and that didn’t even help with the pain. Anyhow, the Topamax helped at first and they decreased in number but then the headaches increased once again back to where they were when I started taking it. I have lost 30 lbs, can’t think clearly, or find words to express myself. I’ve started having rashes on face and arms occur. I’m in a constant fog. I’m constantly nauseated with occasional vomiting and constant diahrea. I’ve lost interest in food. I’m awaiting an appt with a neuroligist and have had a cat scan on my head but haven’t gotten the results yet. Chest and abdominal pains started about two months ago. They have increased in intensity and duration. Whenever I questioned my doctor about these symptoms and asked whether Topamax could be the culprit, she said it couldn’t cause something as intense as I was experiencing. So, last night I went to the ER because the chest/abdominal pains would not let up and were so intense that I couldn’t take it anymore. Well, they did every test and scan and x-ray they could. Everything came back normal. They told me to take vicodin and skelaxin when I have the pains and to see my doctor. We asked them about Topamax and they said they couldn’t make a judgement on it and one physician didn’t even know what it was. I am so frustrated! I’m short with my children and I worry all the time. So full of anxiety which I already had enough of to start with.

    Have any of your doctors acted dense and not even acknowledged that the symptoms you’ve suffered could be caused by the Topamax?

  • I was on topomax for two years for complex partial seizures. It worked like a charm for the seizures, but I did have side effects from the beginning – tingling hands and feet and a strange floating sensation, especially when I got still and quiet, like waiting to go to sleep. I also had word-finding problems, which were particularly distressing, since I’m a grad student and teacher and I have to be able to think on my feet. It drove me nuts. The side effects were tolerable at first, but after a while I started losing a lot of hair, and my anxiety levels and word-retrieval problems steadily worsened. My neuro decided to try weaning me off it and seeing what happened. I’m now off it completely for over a year and feeling better. My seizures have not returned yet. Maybe they won’t come back – my neuro says it’s possible…

  • am thinking of coming off topamax am taking 200mg per day am crying all the time and feel like ive lost myself was prescribed the drug for bulimia/ borderline personality disoder i now have a bmi of 16.5 feel like im going mad am totlly depressed yrt sooo fearful of weight gain .. has anyone experienced rapid weight gain as a result of coming off this drug as an anorexic bulimic i fear this could tip me over the edge right now as i already feel totally out of control

  • I started Topamax while my husband was going through cancer treatment for the second time (I’m 38). It helped me finally sleep, but weight loss? None at all…I actually gained quite a bit. Now that my husband is well again, I’m realizing how bad I feel and wonder if it has to do with the Topamax. Made a call to my doctor today and want to stop taking it immediately. I take drugs for ADHD and depression that I know without a doubt that I need, but Topamax seems like overkill now. I’m kind of scared at this point.

  • i stopped taking topamax 5 days ago. i was taking it for migraines. I had a migraine for a whole month. i went to the neurologist…he put me on depakote (i turned into a very angry monster). i then started taking topamax. that was over3 years ago. Coming off the topamax, i have not felt like i was in fog. i used to think i was an intelligent person…until the topamax. i felt so stupid. i would forget how to spell the easiest words. i graduated college w/a 4.0. i was not able to drive at night due to my vision being blurry. i would forget something someone said to me within couple seconds.

    now, my head feels clearer. i am not ready to get out of the car & strangle the person in front of me for not signaling. (i used to get into physical altercations in traffice. i have punched people out before. i used to be a very shy & timid person.) i am more calm. i sleep better. i have more energy. i can’t wait to see how i feel the next 5 days of being of topamax.

  • I have been on Topamax for almost a year now…Haven’t experienced as many side effects as described, except for weight loss and the tingling in hands and feet, neither of which I minded too much. I have been suffering from migraines and daily headaches since I was in fourth grade, I am now 22, so this has been an ongoing battle. I have tried Inderal and Elavil as daily medications, as well as Relpax, Midrin and other abortive medications. Nothing has seemed to work and as you all know, this is very frustrating. My neurologist just put me on Celexa in addition to the 100 mg of Topamax…in hope that the Celexa would prevent the daily headaches…has anyone had any experience with this combination??

  • Topamax is the drug I love to hate. I have been self-diagnosing and self-medicating because my doctor and I never really see each other (don’t you just love America?) and we correspond by email. I used to model, but I know I have a binge eating/exercise bulimia that I have never fully acknowledged or been diagnosed with. I’ve taken Topamax on and off for at least 2 years. I’ve been off it for at least 5 weeks, and I’m hoping to start back on it again. These last few weeks have been great–no mental fog, I’m loving life, and I feel great. Except for the binge-eating and the horrible weight gain. I’m 5’9 and during my Topamax days I was 135lbs and loving it. Now I dare not weigh myself. But beware–I quit cold turkey and it sent me into a serious crazy manic episode which I had never experienced before. I couldn’t sleep, I got extremely paranoid, the world seemed like a dark place and everybody was out to get me. Also, my shoulders and back were incredibly knotted up to and my spine felt like it was twitching–I was literally crawling out of my skin. I was only taking 100mg a day but I quit without titrating back down. While I was on it, I felt foggy and depressed, but the binge-eating was gone. I lost weight. I think my hair did thin out a bit too and become dry and brittle. Part of my withdrawals which thankfully went away over the course of the last few weeks, might have been due to klonopin withdrawals as well, but all I know is I was scared out of my mind and I didn’t feel like myself. I seriously felt like I lost my mind and myself. Then why, you ask, am I getting back on it? I need to control the binge-eating. And I liked myself better skinnier. I have a foot swelling problem the doctors never did figure out, and I’ve noticed on Topamax, my feet were actually normal for once. So maybe my reasons are vanity…who knows? Tonight I’m taking 50mg and after this week, I’ll be back at 100mg. Good luck to everyone. I’m only 24 and tomorrow I’m starting a raw foods diet (I’m an ethical vegan, but I’ve always been drawn to the raw/living foods lifestyle) and perhaps that will help and maybe I won’t need (or think I need) these damn drugs.

  • OH MY GOSH I THOUGHT I WAS DYING…and still do.I was on Topamax for almost 2 months. Even though I only have a migraine maybe 4 times a year my neuro thought that my brain “blinking” on and off when I roll over in bed could be a “Migraine Variant” (insert eye rolling emoticon here)I only ever got up to 50 mg..my neuro. wanted me to go up to at LEAST 100mg but I just couldn’t. I had violent tingling through my whole body, especially when laying down, the whole time I was taking it, and now I have been off of it for 9 days and still suffer from tingling though not as bad. I also had my right eye suddenly start jerking to the side about 2 weeks into the medicine (only 25 mg) That lasted about 6 seconds and scared the crap outta me. The anxiety was awful, and my RESTING heart rate stayed around 125 beats per minute..sometimes going higher and I had to be sent to a cardiologist. I also had extra beats recorded on a heart monitor I was put on for 24 hours. After stopping the Topamax, there were times where my heart rate would just slog along a few beats before going back to either normal, or back to a too fast rate. It also made me feel sometimes like my hands were HUUUGE giant hands. This always happened when I was talking to somebody, usually on the phone. I would get a feeling like I was hyperventilating even though I wasn’t, my head would feel very out of it, and my hands would feel like huge balloons and the phone would feel very tiny and hard to hold on to. I just found out that now my Calcium level is too high… It was on the very high end of normal a month after starting the Topamax..at 10.4 and then about 3 days after stopping the Topamax it went above normal to 10.6 All my blood tests before starting Topamax were NORMAL~! High calcium level is not good! It has caused me to have bad bone pain in my arm. I also had ataxia after starting the Topamax and still do, and a VERY bad case of hand tremor. The biggest issue I am having right now did not start until 2 days after stopping the Topamax..and that is twitching in my muscles all over. My thighs, legs, feet, arms and hands, even the back of my hip and flank twitches. I now have muscle twitches sometimes every 20 seconds or so, and sometimes there are 10 minutes between twitches. Either way..they have NOT gone away even though the Topamax should be out of my system.Has anyone else had muscle twitches while on, or after stopping Topamax? The muscle twitches SCARE ME and I ended up at the ER then my neuro had to put me on KLonopin 0.5 mg at night just to deal. Involuntary muscle twitching..if you look it up on google, while scare the you know what outta ya.So yeah… some people might get offended at the TRUE experiences of people who actually SUFFER because of the Topamax…and yes it might cause people not to want to try it. But since the DOCTORS aren’t giving out the truth about this medicine so that people can make a good INFORMED decision about weather or not they want this in their bodies and possibly have to deal with the horrible experience that I have..and still AM going through. If anyone can offer me support and has gone through a similar horrible ordeal from Topamax, please email me..Dawn, at LedByTheLamb@aol.com

  • Hi, I keep reading horrible things about Topamax. I filled my prescription on 3/12. I was so scared to take it after reading reviews, that I waited until 3/21 to actually begin taking it. I was so worried about losing my hair! I want to lose weight. I am so obsessive about my weight and to lose my hair is NOT worth it. Yet, I took the chance and have begun taking it. Well, I did all the reading I could do and…well…so far so good! I am only on 25 mg once per day in the evening for one week, then I increase that to 25mg 2X per day (once in the morn then in the eve.) Then it gets bumped up to 25mg 3X per day. I am about to go to the 25 mg 2X per day. I have to say – I am not experiencing ANY side effects. Although, I have had some headaches. BUT, that’s probably because I am going nuts taking B-Complex and other vitamins to combat hair loss in case this drug tries to make me lose my hair. I think I would die if I lost my hair!! I’m thinking – “Being chubby/Being BALD? Which is worse?” Definitely hair loss!! I also want to say that you have to take this drug WITH PLENTY OF WATER!! I would also suggest the following, which I pulled from a website about combatting hair loss: Take your B VITAMINS and Biotin!!! Tres Emme makes a great shampoo with B5 in it. I just bought it the other day. I was just telling my friend how great my hair looked today…I don’t know if it’s just me or the vitamins, but I hope the Topamax does NOT make me lose my hair. I’ve only been on it a week. I will totally F-R-E-A-K OUT if I lose my hair!! Anyway, here is the list of vitamins to combat hair loss: Take them daily! I’ve also heard B Vitamins are a diuretic??? Soooo, for those looking to lose weight….hope this helps: (I’m not a doctor, so always check with your doctor – but these are vitamins, right??!! I have heard you can get sick from too many vitamins, though!)

    Bioton – 50 mg 3X per dayB3 – 50 mg 3X per dayB5 – 100 mg 3X per dayB6 – 50 mg 3X per dayInositol – 100mg 2X per dayVitamin C – 3000-10000 per dayVitamin E – 400-1000 mcg daily

  • I am a rapid cycling Bipolar I. I have working with many different doctors and tried just about every (Psychiatric) medication to find the right combination of meds for me to get well and well reclaim my life over the last 7 years. Yes, my weight has gone crazy. 108 lbs to 173 lbs. I went on Topamax 400mg and in the last 10 months and have lost 43lbs. The only side effect I have noticed is that my hair seems to be falling out more (it did some already from all of the other meds). I’m going to continue taking it until my weight is where I want it and then discontinue it. In my experience it’s been a good drug. I think it’s helped as an addition to my combination of stabalizers without any side effects that I’ve noticed other than the hair loss and the great weight loss. One thing I have heard though is that once you stop taking it you gain the weight back. I don’t know if that’s true or not. It’s just something I’ve heard. The hair thing is a real deterent for me to not want to stop taking it, but I had extremely thick hair and I’ve lost almost half of it in just shy of a years time. My recommendation to anyone considering trying to the drug is to just give it a chance. If it works for you great. If you don’t like then just stop taking it. What’s a wonderful drug for one person maybe horrible for another. Our body makeups are all different and respond differently esspecially to these types of medications. You can read all day long about what people have to say about Topamax, but the only way to know if it’s a good drug for YOU is to try it out for yourself and then make a dicision.

    I hope this helps.

  • Hello everyone! I am a former-Topamax taker, for migraines. I took 50mg/daily for about 3 years. I stopped taking Topamax in November and have been “topamax free” for 6 months now!

    I wanted to encourage any of you who can live without Topamax to give it a shot: it’s worth it!!!

    For me, my headaches have been slow to return, and in 6 months I’ve only had 2 really bad migraines whereas before I was having 2-3/week. I have, unfortunately, gained some weight: BUT whereas on Topamx I was at a super skinny, make my family worry 105lbs, I am now up to a healthy 115lbs and although I sometimes miss the “fit into anything” figure, the benefits of being off this drug far outweigh my skinny vanity.

    Nearly ALL of my other side effects have gone away. At one point, my doctor thought I had interstitial cystitis (a bladder disorder), irritable bowel disorder (from constant vomiting and diahrrea) and I was having incredible joint pain and sexual discomfort. Let’s not even start in on the “mental fog” we all talk about….let’s just say at times I couldn’t remember important events from the past year! (like…my own wedding!) I asked doctor after doctor, “could topamax be causing these problems?” and they all said NO…yet now, after being off for 6 months, EVERY SICKNESS I WAS DIAGNOSED WITH WHILE ON TOPAMAX HAS GONE AWAY!!

    Just this week I went in for a job interview and BLEW MYSELF AWAY! I wasn’t having any problems forming coherent sentences, or remembering words! My vocabulary is finally back and I don’t forget what I JUST did 5 minutes after doing it. I can actually sit here and type with ease and express myself…unlike before on Topamax where I would not have a clue what I was doing.

    To sum it up: if your condition is one you can take other medication for and you are on Topamax out of vanity because you enjoy the weight loss….TRUST ME: it is worth it to give it a try and go off!!! You will feel like you have your life back and your body will thank you!!! I am SO happy now compared to the last 3 years, and I know my husband is happy to have the old me back. Good luck!

  • i have been on a steady dose of 100 mg a day now for about 3 years (for migraines). i lost about 75 pounds and now maintain anywhere from 110-125 lbs. depending on the season. i have read all the comments and i think that most of the worst symptoms people experience occur at daily dosages higher than 100 mg. for me, there is no need to go higher – it does its job. i also experienced the tingling etc, but that means you are not drinking enough! with this med, you MUST drink all day long or you will suffer the consequences. that also includes kidney stones and metabolic acidosis, so be sure your fluid intake is adequate.

  • Hi everybody

    Before taking topamax, which I've now been taking for a period of five months, I was taking the mood stabilizer abilify. Unfortunately, I took this medication for two years or do without really knowing what my illness means so I wasn't treated properly; that is to say, abilify did me no good. I acquired a new psychiatrist and he prescribed topamax. Two weeks into my regimen, I was severely depressed but no longer manic. Let me emphasize that this depression was the worst depression I had ever experienced. Anyway, after two more weeks the depression subsided but my psychiatrist decided to eliminate my abilify and increase my, topamax to compensate for whatever beneficial effects I may have been experiencing. Anyhow, after increasing my dose to the recommended dose, this severe depression hit again. It is a very debilitating depression that made me abandon all hope, made me exhausted, made me withdrawn, etc. fortunately, after some weeks it has subsided.

    After that misfortune, all I can say is that I'm no longer manic and I'm thankful., however, I don't feel motivated anymore, I don't feel creative, I don't feel any vigor. I feel depressed. My head feels foggy.

    I'm getting off topamax soon

  • My boyfriend took this medication for his headache. We been together for 7 years and he tried to take this a few times but he couldnt get pass the side effects. This time he tried again it has been over a year of takING this medication . He loves this medication. I hate it.
    My boyfriend was a sweet ,kind,and gentle man. Now he is a subboring cocky a**hole. He has no empathy for anyone feeling. He is very cold. One minute he will walk around happy and the next minutes he is in a depression wanting to be alone. I also realize he has a issue explaining his feeling or just being aware of what he doing. I had many conversation about his behavior and he just look at me like he is so confuse..if I ask him a difficult question he will hold his head in confusion.
    I also seen him sit in front of a TV for hours ..not saying a word. You can’t even have any discussion with him because he will not take responsibility for his actions or consider anything you say.
    This was a man who was able to communicate well and was able to take criticism effectively. Over the pass year and a half he had been in several job disbutes. He lash out on people at work. He can’t drive with out having road rage.
    Lastly I have to say he does things without making logical sense. Good example is we move over a year ago. Instead of we boxing and packing items before we move,he wanted to pack the day of moving. I explain to him this doesn’t make sense. He tried to convince me that packing on the same day we were move make sense and it would be nothing to do. I pack my things only. Moving day was hell. When I explain why it was hell he denied it and made some other excuses.

    I can go on and on about his behavior. This man has change so much and it was the year of taking this medicine. No medicine should change your personality.

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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