Thankful to not be alone…I’ve been on Topamax about 1 1/2 years starting day one of 30 days to get off them !! What a horrible drug!! I hope the side effects don’t remain afterward?? Similar to most of u I have memory loss to the point of ” did I take my pills today” ? When it was only a half hour ago!! I suffer sleepless nights or sleep to much . Very moody at times . The numb fingers toes feet hands all the way up my arms at times!! Just drink plenty of water , how much is plenty because really !! Halo sinations , twitching at times …not fun , not fun at all!!! Take it off the market!!!!

I took 100mg of topamax today prescribed by my neurologist yesterday to attempt to control my basal artery migraine symptoms to replace the inderal i have been taking for years, big mistake… hours after taking, i experienced dizzieness, numbness of the lips, left arm, left fingers, severe cognitive difficulty, inability to think, the neurologist told me to immediately stop taking the medicine and drink lots of water to flush it from my system, i will never take this medicien again, found this blog again, awful medicine, still feeling awful, but improving, hope the symptoms fully subside… my heart goes out to those of you that have suffered on this medicine…

In 2009 I was taking Topromax for lifelong “common” migraines. During the time that I was taking it and increasing the dosage for breakthrough headaches I was experiencing side effects that gave me mood swings (I was either crying or being verbally agressive). 0. I was losing words which I blamed on being 63 years old. I began walking like a drunk and basically behaving like one. My therapist suggested that this behavior was from the Topromax that I was taking. My neurologist weaned me off it and the symptoms diminished but never left completely. Within several months of quitting the drug my symptoms worsened. At that time I thought that the drug had changed something in my brain. After all that’s the purpose for siezure treatment. My neurologist was adament about it being a safe drug. I never went back to him but when I became lightheaded and dizzy, feeling as if I’d almost had too much to drink, I went to see my PA suggesting that I may have a middle ear infection. She sent me for a CAT Scan which showed vasculitis. From there I had an MRI which was inconclusive. Next was a negative Lyme’s test, then a visit to the rheumatologist to check for Lupus. After four months of testing, it was ruled out. I found a new neurologist who thought I had MS. He sent me to a specialist who felt that I did not have MS but suggested I return to the Neurologist. He ordered a second MRI of the brain and MRIs of the C and T spine.He disagreed with the specialist and was not thrilled with my asking questions which I’m sure he felt undermined his authority. So he dismissedd me as his patient and told me that I only needed one doctor and it should be the specialist. I returned to her and she still felt it was not MS but that I should have a Spinal Tap just to be sure. The specialist referred to the possibility that it was depression. After my first meeting with the MS Specialist I started on Cymbalta which helped the depression but did not decrease my other symptoms. A TV ad concerning people who had taken Topromax led me to this website. I was beginning to think that I was a hyypochondriac.

i was on topamax and maxalt for my migrianes. from day one of taking topamax i had the loss of memory blurred vision the dizzness and the balck outs. After a year of taking myself off this med.i still have the same dizziness blurred vision and memory loss of the simplest thing like how to spell me own name, where i live, or even how old i was, and now it seem like i have more wrong with me than i did before. I have weakness in my right arm , and both legs, and chronic pain alover my body. I am on 39 yrs old and my husband alond with other drs say i move as if i was 95yrs old. And the a dr. put my 14yr.old daughter on the same pill before i realized it was the pill making us fell like this, needless to say i threw her pills down the tolite. I feel it is wrong for these companies to make these drugs and the are suppost to help u but cause so much problems

I have been on Topamax for about 2 years, for migraines I currently take 125mg twice daily. Since I’ve started taking I’ve had blurred vision( halos when i wake up in the morning), Slightly elevated AST ALT levels, my MD’s are aware, intermittent vision loss in one eye (new normal eye exam so far), dizziness, so tired that I have to take a nap at least once a day. I developed asthma, since being on this medication, which I have no family history of this and I have no history of this, tingling on and off in my hands and feet. I have a tremor in my left hand I’m unsure if its related to the medication but its getting worse. I have very back muscle and joint aching. I have also had some reproductive issues. I also at times can even think straight, or remember simple things. Now not all of this may not be related to this medication, but before I was on such a high dose I felt like a normally functioning person I have a appointment coming up with my neurologist to try and wean off this drug since it is no longer controlling my migraines. Maybe it not the drug that is causing all this but before this I was a rather normal 27y/o

i took this med for years. when the migraines started reappearing, my doctor just ramped up the dosage till i was on 400mg daily. i couldn”t stand it anymore. i have lost memories of entire friendships. i have neuropathy on my r hand and arm. i have generalized pain and weakness. i couldn’t even sing, because i couldn’t remember the words. i have been weaned off with my doctors help but some of the symptoms persist. i have been a nurse for over 20 years and this affects my practice. please help me.

I’ve been taking generic topiramate for about 2 years now (I think… memory’s not that good… go figure). At first, it was quite the miracle drug–I was sort of in a constant state of migraine, and the topiramite made it go away. I didn’t mind the tingling fingers and all that. But in the past several months, I started noticing mental problems–confusion, disorientation, and serious memory loss (short term and long term, like I have dementia or something, but I’m only 21). A lot of the symptoms were similar to what I had before I started on the drug. I suspect acidosis. In fact, I started eating an alkaline-forming diet (lots and lots of lemon water, no meat, raw veggies, quinoa, etc) and started feeling better. We’ll see if it lasts. Oh, and I also have worsening vision in my left eye. I’ve always had a slight astigmatism, but now, from seemingly nowhere, I’m also quite farsighted in my left eye. I suspect topiramate because, what else?

I am on Topamax. 50mg a day. I am now experiencing hair loss along with depression, fuzzy vision, and confused thoughts. I have a doctors appointment in a few days to get off of this medication. I cannot be depressed and experiencing these side effects while my husband is deployed and I am the only parent to take care of our child.

After a year on Topamax I went off it. And a few short months latter I suffered major eye pain and fuzzy vision to start and then the eye pressure got so bad I lost my sight for a few months. I had to get multiple spinal taps and a multitude of specialists could not figure out how to fix my case. Finally a neurologist put me on an aggressive bout of steroids. A few months later I my vision got good enough to function but now I have permanent nerve damage due to the spinal fluid that had leaked into my sockets and caused the eye pressure to rise. I now have permanent major sight loss in my right eye.

I was prescribed Topamax in 2008 for migraines and fainting. I read the enclosed risks and side effects. I REFUSED to take this drug. There were far too many side effects such as skelatal pain, loss of language recognition, kidney failure and an ARRAY of other things. I am not suprised that this drug has now caused so many other problems. My advice, see a natureopathic doctor. Find the cause and cure it…do NOT just pop a pill to treat the symptoms! I am sorry to all of you who were not aware of the effects, and remember, that everything happens for a reason! Good and Bad. Bless you all!

I was prescribed topamax for epilepsy I was taking 100mg three times a day. I lost more than 50 lbs. , experienced memory loss, extremely weak and lazy, it kept me so doped up I didn’t know whats going on half the time, I stop taking it but I still experience numbing of my hands and toes Im always cold and my vision, I now wear glasses. Before i was taking topamax its like they were using me as a test dummy they couldnt determine were the siezures were coming from so they tryed me on different seizure medications(depakote & lamictal )making my situation worser. I got pregnant a couple of months after they diagnosed me epileptic. Im taking these different meds and went to a routine clinic appointment, they drew my blood and my baby was born with gastroscisis (intestines on the outside) it wasnt genetic they didnt no what caused it but they seen it before in like 1 out of so many thousands of births the numbers were ridiculous i was young didnt no any better (17) didnt no to question the meds

I was prescribed the drug Topomax for epilesy and migraines. I cant remember exactly when I began taking Topomax but then again, thats nothing new. I do remember getting back on it after having my daughter in 2005 and have been taking it ever since…even thru my last pregnancy. Like alot of the comments Ive read on here, I too have memory loss. If it happened more than 10 min ago, I forgot it already. I have no energy, always tired but have a hard time going to bed at night. When I do finally fall asleep, I wake up every hour or so. I always feel frustrated, angry, like Im backed into a corner and I cant get out. Depression is a part of every day life for me. Suicidal thoughts are also quite common but so far have been easily avoided due to my strong Lutheran upbringing and the fact that I have 5 beautiful children that need their mommy. In 2008 while I was pregnant for my 5th child, my seizures got out of control. I was having 2-3 a week. So they raised my dosage from 100mg 2x daily to 150mg 2x daily and added on 500mg of Keppra 2x a day. It still didnt stop the seizures. They had to induce labor at 36 weeks. When he was about 3 weeks old, he started getting real sick. I was taking him back and forth from the hospital to the doctors office. He was acting real weak and vomiting. Wasnt really eating. They kept telling me it was acid reflux, or jst his formula. After a week of all this run around I had takin him to the doctors again one a.m. He was looking extremely pale, eyes bulging out of his head, his face looked like a skull with skin stretched across it. I knew something was way wrong!!! I asked the nurse as she was taking his vitals what her take was on what she was seeing. It was at that point we realized he was no longer breathing. VERY LONG STORY short…he was diagnosed w pyloricstenosis, rsv, bronchiolitis and pneumonia. They told me he had the pyloricstenosis since birth and that its a genetic thing. The funny thing is, no one in either my husbands nor my own family has ever had anyhting like that. So was it the Topomax or just a terrible misfortune? Im very sry to all of you who have had the terrible side effcts that come along with this drug. I know how frustrating it is. But it is comforting to myself to know that there are others out there that feel the same way I do and that when I cry because I am terrified that Im not gonna remember all the precious little things that my children do now, theres someone out there who is crying for the same reason. Its just nice to know Im not alone anymore and that there is someone who understands.

I was perscribed Topamax about 7 years ago for what my Dr. assumed was migraines. The sad part was he himself did not exactly know what was causing my symptoms for what he was treating me for. I like others that I read about had some of the same symptoms. Tingling in my fingers, drastic weight loss, memory loss expecially for math, some hair loss. When I spoke to my Dr. about these, he said, “Oh, yeah that is some of the side affects.” Eventually my family Dr requested that I be taken off Topamax due to the weight loss. And eventually my Dr. that was treating me for what he really did not know what I had, agreed to take me off, it really wasn’t working. As of today I have been diagnosed with right angular closure glocomua. I just went for a eye examin to get new glasses and to my amazement I was diagnosed with this condition. When I mentioned to him that I had taken Topamax in the past his reaction was one of disbelief. He wanted to know why I had taken it, how long I was on Topamax. My suggestion is to anyone that is on Topamax, stop taking it. I feel that the side affects are far more damaging that the condition you have.

I was prescribed this medication for treatment of bipolar disorder. 25mg in the AM and 25 in the PM for the 1st week then taper up to 50 mg at night. I continued the 25mg in AM and PM for almost 3 weeks. I tapered up the night dose to 50mg and a week later the Dr increased my AM dose to 50mg and my PM dose to 50mg. I know of the hand and feet tingling, the sudden onset of depression, the eye twitching, the sudden gastrointestinal issues, and recently issues with my urinary tract. My hair is falling out, I have lost weight, and I am fatigued but cant sleep and have recently noticed that my nails are softening. How does any of this treat bipolar? How does any of this help anything? I havent been on this medication very long, maybe a little over a month. I cant remember words I want to say, I cant focus on my work, I feel like an idiot actually. I was better off as an unmedicated Bi Polar II individual to be honest with you. I feel really terrible for all of us here who trust in the Physicians and Pharm. companies that have our lives in their hands. I am hoping this is all reversible. I am not taking one more of these meds.

I was prescribed Topamaxx following my daughters birth 2 years ago. While on it I suffered memory loss, fatigue, confusion, disorientation. It was so apparent that my boss, who is a veterinarian noticed there wasn’t something right with me, and suggested that I stop taking the drug. I informed my family doctor and discontinued use after only 3 months of being on it. Now 2 years later I still have memory loss. If I don’t write it down, then I forget it. Also I have moments of confusion that I contribute to the drug. I honestly believe this is an existing side effect of Topamaxx. I DO NOT recommend this drug to anyone!

I have lost my memory becaz of Topamax. I cant even remember things that happens early in the day by the end of the evening. I lose my train of thought when I’m talking. I have been off of it for at least 6 months! My eyes are blurry and when I started taking it 3 yrs. ago I started hurting so bad I went to a rheumatologist! I didnt have rheumatoid arthritis.This is a horrible medicine and I thru my away!

I have been on topamax for over a year now. I take over 200mg a day for migraines. Unlike most, I am not here to complain. For me this has been a miracle drug. I am 25 and have suffered from severe migraines since I was a child. I agree it does give you some stupid moments and at times you do get tingling in your hands or face. For me the tingling doesn’t happen too often now. It was more so right when I was put on the medication, but if your doctor didn’t warn you about the side effects of the medication then read up on it. Because most of what everyone has said so far (to an extent) are common side effects). Also, you MUST drink a good amount of water with this medication to avoid kidney problems. I have always been a big water drinker anyways. Usually about a gallon a day, and a take a One a day vitamin. The dr just did an exam on me a few weeks ago to make sure my white blood cell count was good, kidneys were okay, etc… If it wasn’t for topamax I wouldn’t be able to make it through one day without migraines to the point of vomiting and needing to hide in a dark room. This has been the best drug EVER for me! Weight wise I may have lost a few pounds but literally…. a few (0-5 from the med). I am a small to begin with, and really haven’t seen much change in my appetite at all.

I was on Topamax when I found out that I was pregnant with my Daughter. She was born with Cleft Lip.. I am just now finding out about this lawsuit that is going on.. Does anyone have any advise or have a child born with the birth defects that are now being shared with those of us who were on the drug at the time of conception?

My wife has been on Topamax for around 5 years for migraines. The neurologists increased her dosage from 200mg a day to 400mg a day. This was last summer. Since then starting in August she exhibited stroke like symptoms every couple of weeks. Whe have been to the emergency room 3 times since then. She has no control of her legs, slurred speech, basically cannot function. They treated it as a stroke and claimed it was a severe migraine on day 2 of our visit. All heart tests came back good. She has had every tests run that is available. Each time she is in perfect health. Recently after our third hospital visit she was taken off of Topamx after a week. She began hullucinating badly. (A living hell for me her spouse). I have more to add but will stop.

I wAS on TopAmax for over a year. The drug is also calledStupemax by some. It put my life in chaos. One day I was A dynamic girl with a great careeR, the next (6 moS lAter). I was on the decline and soon lost a great high paying job. I Had memory loss, slow thinking, word rEcAll issueS, Cognitive slowing and loSt over 30 lbs to weAr I had to start eating protein shAkeS to keep weight on. I hope issues are reSolved w this drug. I’m still trying to bounce back.

I understand the frustration and horror stories believe me I have my share but topamax wasn’t my problem. I am only 21 and I have over 7 chronic diseases and take over different 10 different medications daily some of the diseases can kill me. However, you have to remember that if you take more than one medication, even with a supplement you are almost making a “new drug”. Drugs interact and 2 drugs interacting can make an effect that separately they would not make. I was also told I needed to stop taking topamax, however, I knew this was not a good idea, I have a BA in chem (going to med school) I know how these things work. Instead I talked to my dr carefully and saw what was causing problems. I stopped one drug, which I was on before topamax and all the symptoms of the drug “topamax” went away and I was feeling great. I then stopped taking topamax to prove to myself it was fine to take and I was in horrible shape (granted I was under dr supervision). It was not my topamax causing issues. It was a combination of medications. Most people have more than one dr and they dont really know which drugs interact and which ones could be making you worse which added together. Sometimes it will be topamax but in my case it was not (and had I listened to my dr I would be on different medication now) and I think some people dont realize that even vitamins and OTC meds can interact with this medication. I am not saying people are wrong but just think about it and be careful. I had many seizures due to “pure medication combinations” that doctors told me were fine together. Also everyone is different and will respond differently to medications and combinations; it may take a while to find the right one for you.

I was initially given topamax to assist in weight reduction. Initially it seemed to help. I started to have some problems with my vision which I assumed were just in need of a new pair of glasses. After several months, I started to become more forgetful and frustrated. I would fall asleep without realizing it. I felt physically and mentally drained. Eventually I asked the Doctor to take me off of it. We agreed to do so, within a few weeks afterwards I had fallen of my steps at home. My primary care physician advised my I had post concussion syndrome. I never actually hit my head. I got put back on the topamax to help with the migraines I got as a result of the concussion. The forgetfulness, not being cognitive all the time, I had basically begun to develop the symptoms of an ADD patient. The memory loss was frightening. My husband would send me to the store for a few items, I would walk around the store trying to remember what in the world I was supposed to be getting. He would tell me something and five minutes later and I didn’t remember him saying a word. After three months of this behaviour I lost my job. I have worked in the same business for over twenty years and had a sterling reputation with all of my employers….and I got let go. Today I still suffer from dizziness, forgetfulness, and am very unstable on my feet. After seeing a new Neurogist, I was advised that my symptoms were due to the medication otherwised nicknamed “dopemax”. This medicaiton should be removed from the market. There many other symptons I have suffered due to this medication. It’s frightening to not know if this will improve or not

I experienced the horrors of topamax b4 i found this page. i dont believe at all that the terrible things these people have suffered r at all scare tactics. If u havent experienced what we have as a result of this devil drug then u have no right to really comment. Scare tactics??? Really???? Whats scary is that im 30 yrs old and i cant hold my 4 month old daughter at times because of the way my hands shake, or having a stroke and not knowing what was happening 2 me, or not being able to remember how to spell my name at times… Thats scary.

THERE ARE NO CONCLUSIVE STUDIES ABOUT TOPAMAX. This lawsuit has no scientific basis other than scare tactics.

I have taken topomax for several years my eyesight has deminished. I now have seizures frequently I was told by my Dr it was for migraines and was diagnosed BiPolar at times It made me feel suicidal. I have a studdering problem from time to time and my memory is very bad. I loose feeling in my hands and loose control of my head movements. I feel as if I have lost my mind.

I was on this drug for approximately 2 years. Immediately I suffered cognitive deficits, memory loss, not being able to count money, overall “fogginess” in the brain. I have been off of the drug for almost 5 years and still have difficulty thinking of common words. I can be looking at a pencil and can not think of what it’s called. I have no short term memory. On a daily basis I will walk into a room and wonder what I went in for. I have to make lists of everything I need to do or purchase because I don’t remember a thing. I was very sharp and on the ball prior to taking this drug. Now my family teases me for being so ditsy all the time. This is a serious drug that needs to be taken off the market. The benefits do not outweigh the side effects.

I was put on Topamax almost 2 weeks ago, my neurologist prescribed it for chronic migraines…and within the first week of a dosage regime of 4-50 mg tabs. 2 in the am and 2 in the pm…i was lost inside my head…i was in a fog…my hands were frozen in a sense, and i shook like i had stage 4 parkinsons…the right side of my face drooped, and i was drooling…i dont remember much at all from the last 2 weeks, i was sooooo tired, but didnt sleep at all…when i called the neurologist, and told her i had a reaction to topamax and asked for sumthing else that i knew worked, not only did she refuse a different prescription, she acted nonchalant about the reaction. yesterday i went to my ob dr for a regular scheduled appt, and when she saw me in a wheelchair was very concerned and started asking questions…she in turn sent me to the ER where the drs really paid me no mind when i kept telling them i had a reaction to topamax…my dr ordered xrays of my back and waiting on ct scan appts because she is testing me for a mild stroke because im carrying all the symptoms and signs. i still have my headaches, and i havent taken topamax for 4 days now, and i still cant see clearly, i cannot hold a train of thought, i have tremors in my hands, severe lower back pain that has seemingly crippled me, and i have to concentrate to write my own name…this is sad for i have 5 children, one of them being 3 months old…so sad…all i wanted was some relief from migraines and now look at me…

my vision is very bad i can hardly see/

i have headaches for over 18 YEARS, some dAYS I HAVE TO JUST STay in the bed, i started on topmax a yea ago. 200mg a day. i started losing my memory. my teeth and gums are so sore and my mouth is broke out, my blood pressure is 60/40 i have had two strokes. i can not work or drive a car, i have black out spells i am truly loosing my mind. one dr told me i had dementia until he found outi was on topmax. this is a very bad drug. i would not advise any one to get on this drug.

I had an accident at work and evetually was put on all kinds of medications and one was Topamax.Found out after taken the medicine, which drove me nuts, fatige,depression weight loss, loss of memory, afraid of everything, scraping my skin off my own face, feelings I had never felt before, found out I was pregnant, not once was tested by my workmans comp physician until I told him I had an infection and had’nt had one since I was pregnant with my daughter then decided to do a pregnancy test.I found out I was far enough along and was told to have an abortion, because of the meds. bad enough everything was falling apart and I wasn’t for sure about anything I told my attorney and there was nothing anyone could do. It has been several yrs, and I cleaned myself of their prescriptions, but still fear I have side affects from the drug,consumers please be ware…If it doesn’t feel right it’s not right…

I was placed on Topamax 3and a half years ago. I have had bad migraines since I was 6 months old. They decided to try Topamax since nothing else had helped. I was on it for 9 days total. About 5 days in, I found I was extremely irritable and moody, flew off the handle over everything, felt like harming myself and just wanted out of my own body, to escape all the bad feelings. I pulled myself off the meds after the 9th day, because I couldn’t handle it any more. Two days after I went off the meds, I started to have my eyesight go blurry, over the next four hours, I went almost completely blind. I went to the ER and was told it was part of my migraines. I told the Dr. it wasn’t and he told me I didn’t know what I was talking about. Funny I am pretty sure it was me that had delt with these for 30 years, but I guess he was the expert on them. Needless to say, I did not goback on the meds as he had demanded. The next day, still blind, I called my optomatrist. They saw me on emergency, and told me it looked like I had angular glaucoma. They sent me to a specialist, and his only opinions were, that he would give me new glasses for my new vision, and that my eyes were shaped weird. Day three, I was seen by my actual eye Doctor nstead of his partner, and right off the bat he asked me about the Topamax. I told him I had been on it for 9 days, but took myself off of it due to the side effects. He told me to stay off it, because I was having an extreme allergic reaction to it. He said that hopefully it would correct itself, but that had I stayed on it, it may have been permanent. By the end of day four, over the period of four hours, my eyesight came back, it is not back to what it was before, but at least I can see. Get this DRUG off the market. Everyone I know that has tried has had some problem or another. The few people it helps is not worth the damage it does to those it hurts. It is the DEVIL drug from HELL!

Has anyone experienced a thyroid disorder after going off this medication? After my nuerologist left the area and I obtained my medical records, I noticed that she made a notation in my records about low TSH (thyroid stimulating hormone). She never told me about this. Nearly 5 years later I was told that I practically had no thyroid level in my blood. Now I have to take medication to treat my thyroid disorder and have gained back all the weight I lost while on Topamax and about 30 lbs. more. The thyroid medication is causing dry mouth and gums which has led to a tooth and gum problem for me. Topamax is poison, simply said it will ruin your body and lead to other health problems that will never go away. I will be on thyroid medication for the rest of my life. Someone needs to help all of us people who were misled about the benefits of Topamax and look at the health issues that we are all experiencing from trusting the physicians and drug company who manufactured it. I was taking Topamax for Fibromyalgia which is an off-label disease that doctors were prescribing it for. The weird thing with me, after getting off Topamax and being treated for the thyroid disorder, my Fibromyalgia symptoms have disappeared, only to look forward to poor health that was caused by taking this horrid drug.

i have been on topamax for almost nine years now for a eating disorder that started when i was 14 years old. thank god this medication saed my kife or the eating disorder would have destroyed me

I was put on topamax for migraine headache. I had severe short term memory loss so bad that I ended up taking Arecept. I found that I could not remember how to get home or where I was going I would lose feeling in my hands and would drop things. I also had freqent urination and put on meds for that I was taking it when I found out I was pregnant my MD took me off cold Turkey and I ended up in the emergency room in severe pain. I had bleeding during my pregnancy and he has developmental delays and behavior problems. I did not know I was pregnant for almost 2 months.

I too have had the worst experience with this medication. I started taking Topamax in 2007 for migraines… this was the biggest mistake of my life!! About two weeks into the medication I had pain in my right wrist….I even went to the ER thinking I injured it somehow. They could find nothing wrong. As I said it started in my wrist then traveled to my left wrist, shoulders, knees ect. I never associated the medication to my ongoing problems. This went on for years… I was a Firefighter/EMT and could no longer perform my job description… I soon became unemployed. I thank God that I have such an understanding husband. The symptoms became so severe that I could no longer walk without assistance. We went to several Doctors who said that there was nothing wrong with me…until a blood test called an ANA Panel showed 1:1600+ , yet they could not find anything definative. This medication has destroyed everything I worked so hard for. I quit taking it after reading an article and realized that I was experiencing the problems associated with Topamax. I have been off of it for about five months now and have improved considerably however, I still have muscle/joint pain but am hoping it will improve with time. I also experienced many other symptoms such as memory loss, severe menstral cramps, insomnia, tingling in my hands and feet, weight loss, but the pain was the most unbearable part of the ordeal. I was prescribed Vicodin fo rtwo years just to function on a daily basis. I am now off of it too!! This is a terrible drug and should be taken off the market or better warnings should be announced.

i was giving topomax for migraines and three days later i started to have seizures and i never been right since… that pills cause my life to change, and here it is 7years later and i still suffer from taking that pill….

Jennifer, i feel your pain. My doctor thought my headaches may have been migraine related, headaches every day for about 6 months now but unless I have a very high pain tolerance I did not feel they were migraines. I was a bit nervous to try this medicatioin but thought I would give it a month and see if it helped my headaches. I was only on 25 mg twice a day for the first week and was suppose to double my dosage each week up to 4 pills twice a day within a month. I only took it for one week and just got up one day and couldn’t see. vision so blurry i couldn’t see anything beyond right in front of my eyes. immediately got in to see my opthamologist and she had to do laser treatment to put holes in my iris’s for my eyes to drain from all the pressure. she is unsure if my damage is permanant or not. I went from 20/20 vision to not being able to see anything beyond the length of my arm in one week. very scarry. now a waiting game to see if I get any of it back

I was taking 25mg of topmax for migraines. After about 8 days, I woke up on day 9 unable to see. I went to see my neurologist in an emergency, who sent me to an opthamologist. She reported my vision had gone from a -2 to a -7 overnight, my eyeballs were swollen 2x their size which was affecting my vision. Once the swelling in my eyeballs went down, the fluid filled all around my eyes swelling my eyes. I had lost my vision for 2 days.

My wife had been prescribed 200mg of Topomax a day as a migraine preventative about two years ago. Over the last year, her personality changed greatly and the migraines really didn’t decrease much. I could see the personality change as she and I have been married for over twenty years, but the doctors didn’t see it and would not listen to my comments even when I accompanied her to the appointments. All this went into overdrive six months ago with major personality and mood changes and the resulting attempts on her own life. After the second overdose attempt in a week, she also had a pulmonary embolism which was probably caused by either sitting in her car for several hours slumped over or from lying in the hospital bed unconcious for a day. Emergency surgery saved her life and she is now back to her old self since she’s been off the Topomax for a couple of months now. She remembers little of the two months previous to the episodes and her vision is returning to normal where it had been getting worse. Short term memory is still a problem right now so I hope this isn’t permanent.

I took Topamax for less than a year for severe migraines, starting when I was 23. It helped somewhat in the beginning, but the side effects were horrible. The tingling in my hands and feet went all the way up my arms and legs, and was painful, like being electrocuted. The short term memory loss and the inability to find words and finish sentences was instantaneous, as well as losing my long term memories. After just 2 days on the meds, I called my doctors office and asked if the side effects could be permanent, and was told by the assistant that as soon as I stopped the medication, the symptoms would subside and everything would return to normal. Fat chance. I’m 28 years old now and still suffering. It’s like I have ADD combined with Alzheimer’s. I can’t remember the simplest things and I’ve lost so many old memories. When friends reminisce about old times, all I can do is smile and nod and say “that sounds like something I’d do.” It puts a huge strain on my personal and professional relationships due to my inability to remember events and tasks. Some days I think I’m lucky to even have a job at all. Let me be clear, I DID NOT HAVE THESE PROBLEMS BEFORE TOPAMAX. I have also noticed black spots in my vision that persist, and my vision declined while taking the drug. I occasionally still get the strange tingling when I wash my hands or shower, and my eyes will twitch on and off, sometimes for months at a time. I want to pursue more education, but in my current state, I worry that I won’t be able to retain any information. I had also hoped to have children one day, but I can’t imagine how dire the consequences would be if I happened to forget something important while caring for them, so that pursuit seems unlikely to happen now. Even while driving, I often forget where I’m going and why I’m in the car. I constantly hope that I can remain alert enough to avoid an accident while driving, but I sometimes fear that my right to drive might be taken from me one day soon. I was in a lot of pain when I started taking Topamax for my migraines, but if I had been told that the brain damage could be permanent when I asked my doctor about it, I would have quit immediately.

Hello, I’m following up on the comment I posted back on July 6, 2010. I immediately got off Topamax the following day, my doctor acted offended as if i was the bad guy for having these symptoms! I told him that it was giving me vision problems, memory problems, trouble concentrating, and constant uncontrollable suicidal thoughts. All he did was brushed them off like i was crazy! My memory problems were so bad that i could not remember if I took my morning dose when it was noon. Also I had horrible depression and constant suicidal thoughts, it left me feeling worthless and hopeless about everything. As I said I am off it now but my vision has never been the same. I have a lot of visionary disturbances, for example, I will see purple, black dots everywhere, as if I looked at the sun for a long time then looked around. This happens frequently and it is very abnormal. I noticed this while I was driving at night and I would look down a dark street and it would be blurred by dots or shapes, hard to explain, but this is something that never used to happen and my vision is as great as it used to. I have been thinking I should see my eye doctor soon. Also I am still depressed, not sure if it is the Topamax, but I still have suicidal thoughts from time to time. Now if I could go back and never take this drug knowing the side-effects than I would never go near Topamax. But doctors will only discuss the benefits leaving you with hope that your problems will be gone. I know they have the pharmaceutical companies putting all the pressure they can to prescribe this drug. Anyways whoever is reading this I thank you for your time, and hope that all the people who had a bad experience with Topamax get better.

I’d first like to say that I hope everyone who is having or has had problems with Topamax is getting better. I’m with the relative minority on this site who found Topamax to be a lifesaver. I experienced hormonally triggered migraines for the better half of each month–migraines that lasted days at a time. After years of dealing, I was prescribed Topamax. I experienced most of the same side effects that others have reported–ticking eyes, memory lapses, verbal difficulty, numbness and tingling, disorientation, weight loss, etc. However, I knew that these problems were likely to arise, because I read the literature that accompanied the medication AND researched it heavily (incl chat rooms such as this) prior to taking it. All of these things ARE in the fine print (which admittedly is fine for a reason.) Most side effects faded completely out within a 6 month period. I was on Topamax for close to three years, in dosages ranging from 50mg/day to 200 mg/day, and the only reason I have stopped taking it is because I am 36 years old, pregnant, and unwilling to risk any birth defects. I feel the cards are stacked against me enough as it is. I will, however, go back to Topamax after the birth and weaning of my child if necessary. I believe the thing to understand here, especially given the number of troublling, negative testimonies (although I suppose a “lawsuit:” page would be ripe with those), is that everyone does respond to medication differently. What works for one may not help another. Take charge of your own medical interests, though. Be your own advocate. If something doesn’t feel right, change it. You’re an adult. No one can force a pill down your throat if you’re uncomfortable with it. Find a new doctor if the one you have isn’t interested in prescribing anything else. Be informed and in charge instead of lamb-like.

I took 500mg of Topamax twice a day for 8 years. When I got pregnant my neurologist kept me on it but lowered the dose. I have 2 very healthy children although I took Topamax and breastfeed while I was on meds.

It has been two years since my first comment (#3) on this list. I have been off of Topamax all this time, however, the adverse effects continue. I have been told that if they have cleared up by now, it can be considered permanent damage. I was initially prescribed Topamax as an off label use for Bipolar disorder, a condition that has since been declared a gross misdiagnosis. The doctor started me at 200 mgs. and quickly increased the dosage to 800 mgs. to aid with sleep, which in turn developed into intractable insomnia (a known side effect). From the beginning my language center was adversely affected. Unable to find words, stuttering both vocally and on the keyboard (and all that time I thought the computer was on the fritz), unable to write without spell check as my constant companion became a way of life. Not so easy when you are a writer. I also developed what appears to be MS or a variant of. I have 12 lesions which cause numbness, tingling, RLS, nerve pain, spasms, visual disturbances, urinary incontinence, among other symptoms. I have not had a diagnosable “attack” since the first one 10 years ago which numbed the entire left side of my body, causing permanent damage to nerves; not the standard profile for MS. However, it should be noted I had been on Topamax for a few years back then. On neuropsychological testing, I came up as “impaired” and “disabled”. Prior to this I had been an honor student in college with a high IQ. Since beginning Topamax I am no longer smarter than a ninth grader. Dopeamax strikes again. For those “addicted” (yes addicted – no different than a street drug) to the weight loss aspects all I can say is lose it the healthy way – eat less, drink plenty of water and start exercising. The artificial weight loss is NOT worth the damage. You’ll end up thinner, dumber and possibly dead. This is NOT, I repeat NOT a weight loss pill. Stop it for a few weeks and you’ll find it all comes back along with extra baggage. The acidosis is a real and serious side effect. Be sure you have your urinary citrate levels checked for abnormal values that can lead to kidney failure and death. Advocate for yourself and demand to know the risks and potential side effects of this drug and be sure that other professionals follow you up while taking it. I am a Patient Advocate and Activist against the endangerment of patients by uninformed physicians and Big Pharma’s reckless and unethical marketing practices. Check out my blog at http://suzannesmindscape.blogspot.com/2010/11/bad-medicine.html for more information on how this works.

My father had one episode of what was described as Global ???? amnesia about 6+ yesra ago. After many tests and no further episodes (he just forgot where he was and was disoriented) passed after about 8 +hours. Neurologist has done a yearly check up and has had him on Topamax 100 mg twice a day since. He is 92 years old and relatively heathly. I had to change Neurologist for him due to a move. The new Neurologist after reviewing his records was puzzled as to why he was on Topamax for this long and has him weening off it. When I got his prescription refilled for the lower dose I read the insert that the drug store gives you about the drug precautions etc. I almost fell over when I read the first precaution re: Glaucoma….My dad has Glaucoma and is getting near the end of seeing at all…his vision is very limited. He has had this for 10 years. It was known to all the Drs he sees…Other then the fact that he is going blind he is relatively healthy…seems to me that prescibing this drug (after what I’ve read) to a patient with Glaucoma is criminal…am I wrong?

I have taken 50 mg of topomax for about 2 months to help with chronic migraines. My Dr. told me to expect some MINOR memory loss for a few days but it would go away. Well it did not go away. I still have severe memory loss. Slurred speech, can’t remember simple words, how to spell words I have always known how to spell, flu like symptoms. My hands tingle and ache. My ears buzz and I have intense ear pressure all the time. Once I had blood come out of my left ear with no pain and this has never happened before.My eyes are dry and I have some eye pressure. I also have mood swings, feel depressed, have thoughts of what it would be like for others if “I were no longer here” and thoughts like “what is the point of life, you just end up old and alone, your children leave, why not just end it now” I have never had thoughts like this EVER!!!! My Dr. never told me about any of these potential side effects so, I trusted that this was a safe medication. It was only when my headaches started coming back and I did not want to go to a higher dose that I googled “How to taper off of Topomax” All of my symptoms suddenly made sense. Needless to say I have cancelled my follow up appointments with this Dr. since he feels it is ok to rx poison to a Mother of four that can cause permanent damage. I have found a new Doctor and plan to find something safer to treat my migraines. This is scary and serious stuff! It should not be handed out to people unless they are not able to function without it and only as a last resort. I have small children and a husband, I just pray this has not caused me any permanent damage.

My back have been hurting me for a while. I realize that one of Topomax side effects is back pain. I can hardly get out of bed in the mornings. I also have tingling in my fingers and feet.

In March of this year, I was seeing a neurologist for Menier’s Syndrome. Despite my explaining to him that I can’t take most medications becasue they trigger severe vertigo attacks, he prescribed Topomax explaining that it may provide relief of my vertigo episodes. He told me the side effects that I may get were some tingling in hands or feet, a little dry mouth and maybe a little weight loss. Nothing was discussed about any serious side effects. I took 25 mg/day for 9 days. On the 9th day something bad started happening to my vision. Words were jumping off of the pages of things I was trying to read, my eyes felt jittery & I was having light sensitivity. Since I was previously told by my doctor to work through any side effects until they pass, I thought this was one of them. But when my vision started to deterirate very quickly my husband took me to the ER. I had light sensitivity, there were haols & intense colors around street lights & I could hardly see. While in the ER I began to feel clausterphobic & very scared becasue tings apperared to be closing in & colors were cartoon-like. The CAT Scan they did showed normal. I was sent home. (I didn’t take anymore Topomax after this). A few hours later, which is now the next day, my husband called my neurologist who said this is not normal, told us to get to the hospital right away & I was to be immediately admitted. After I was finally admitted & taken to my room I took off my sunglasses which I had been wearing becaus of the intense pain from light, my husband noticed that my left eye was buldging out of my head. My left pupil was also dialated. I remained in the hospital for 3 days because it was the weekend now & I had to wait for poeple to read the results of the CT’s they took (all of which came back normal) & I had to wait for an eye doctor to come in to see me. Finally on Sunday an eye doctor came. It was then that I finally received drops to reduce the pressure in my eye (which was up in the mid 40’s). All the doctors & nurses said this is very rare & couldn’t figure out what was wrong. It was fianlly agreed that this was caused by the Topomax. I followed up right away with the eye specialists (neuro opthamolgist, retinal specialist & glaucoma specialist) I continued the drops as instructed, but even though the docs said everything was back to normal, my eye didn’t feel like it was. I had pain behind my eye, headaches which I didn’t usually get before, & I could feel my eye inside the socket. My husband even noticed it was still larger than normal & my vision which always has been 20/20 was still blurry & wierd. The eye doctor insisted I didn’t have glaucoma, & told me that I need glasses now. I never got the glasses because I believed this was due to the Topomax. Now several months has been spent searching for an answer for the constant eye pain, headaches & now burning of my eye. I went to a different eye doc who diagnosed me as having Narrow Angle Closure Glaucoma, which is the rare kind. I have had a Peripheral Iridotomy in both eyes to correct it. Fortunately the procedure has “fixed” the glaucoma & the pressure but I still have intense pain, headaches & burning. He’s a good, thorough doctor but he can’t find the cause of my continual symptoms. He has referred me to another neuro opthomologist but I can’t get in for 12 weeks. I’m scared of what’s happening to my eye, & I’m scared that so much time is passing. Its been 7 months now since it started. This is the first time I’ve ever posted anything on a public forum, but I’m interested to hear if anyone else has a similar situation & if they found a cause that can be treated. Plus I feel very strongly about this medication. For anyone considering it, please research it & learn as much as you can about it. I think a drug like this should have major warnings & vision problems that could be permanent should be at the top of the list, not minimized at the bottom as a very rare possiblity. The doctors keep telling me that this side effect is a well documented but very very rare side effect of Topomax but according to my research, it isn’t rare. There are many many people who have experienced this and other very serious, and perhaps permanent side effects. Remember, I took the lowest dose for only 9 days & I now have a condition I didn’t have before & I fear what damage has been done that hasn’t been detected yet.

In April 2010 I visited a Neurologist to find a better drug to replace Neurontin for releif from my Polyneuropathy. I was put on TOPAMAX and gradually reduced the Neurontin. After several weeks of treatment I began to sleep 24/7. I had no appitite. The Dr. sugested that I was sleeping from taking Morphine (modest amounts) for my neuripathy. After 3 months with no relief, confusion set in and I was not sure of what I was taking. Someone called 911. I was admitted to the local hospital, diagnosed with Acidosis redulting in RENAL Failure. Near death my primary physician quickly took me off TOPAMAX and I began to improve.. I still have no idea what the future holds. This drug company and this neuroligist should be sued, however, attourneys are relunctant unless there was permenant damage or loss of life. Beware of TOPAMAX!!!!!!!! I am a very young 72 with years of life ahead.

Topamax should have a Black Box warning on it-the strongest warning the FDA puts on any medication.In my opnion, it is a dangerous drug. On November 29, 2009, I had my first and only seizure. I was standing in front of my suitcase packing and the next thing I remeber is waking up in an ambulance, disoriented, vomiting and crying. I had no idea where I was or what had happened to me. I was 42 years old at the time, with no personal or family history of seizures or epilepsy. They did some preliminary testing-bloodwork and a CT scan at the hospital. When I got home, I began seeing a neurologist and had an EEG, MRI, and more blood work. I had none of the markers of epilepsy and was not diagnosed with epilepsy. My doctor, an elderly man in his late 70’s told me I had “abnormal brain waves” and that I needed to go on anti-seizure medicine. He wanted to put me on Keppra and I said how about Topamax (only knowing that it suppresed one’s appetite). If only I knew then what I know now! Hindsight is 20-20, as the saying goes! He told me I would be on it for the rest of my life. I didn’t drive for three full months. I started out slow, titrating up my dosage. I was supposed to work up to 200 mg in the morning and at night, but when I got to 75 mg AM and PM, that was too much for me. The cognitive/memory side effects were terrible. I often couldn’t retrieve words. This was really bad as I am a college student. I have a 4.00 GPA that I have worked really hard to achieve and maintaining it these last 10 1/2 months while on this drug has been a real challenge.I have had many problems with my short term memory. By far the worst effect, though of this drug has been the mood altering changes that occurred. And they were tied to my menstruel cycle. Prior to being on Topamax, I never in my life experienced PMS. My menstruel cycles are very regular 28 day cylces. For the last 10 months, about four days before the start of each of my periods, I experienced the absolute worst sadness I have ever had in my life accompanied with nonstop uncontrollable crying. Worse than any post-partum depression I ever experienced with the births of any of my children, worse than the grief over my father’s unexpected death. Sadness so bad I felt like I just wanted to die. It was bad. I had researched all the ant-seizure meds and they are all pretty bad-they all have very similar effects, so I just tried to deal with it, but it was horrible to go through every month like clock work. It would start 3 or 4 days before my period and last until about 4 days into my period and then taper off. Every month, without fail. Then In August, my elderly neurologist retired due to health reasons and I had to find a new one. My first visit coincided with my PMS and I had a bit of a meltdown and I decided I couldn’t take it anymore, that I wanted off of this drug. She insisted that I a MRI and a 24 hour digitrace EEG before she would discuss talking to me about coming off. Fine, I said. I left with orders for both. It was a Tuesday. I was told that they would call me to schedule the EEG. By Friday I hadn’t heard anything, so I got on the phone to find out why. I had been hoping to do it over the weekend. (Who wants to walk around with 25 electrodes and wires attached to their head?)I told them I couldn’t get off of the medicine I was on until I had this test. What medicine are you on? she asked. Topamax. Ah, stupamax, she said with a chuckle. We don’t do it on weekends, but we have an opening on Tuesday, otherwise the next opening is on Novenber 29th. I’ll be there. So, I had the 24 hour electrode test. And I waited for the doctor to call me…but she didn’t, so I called and she said she wanted me to have the MRI. As we got closer to that appointment, I began to feel anxious about being enclosed in that tube. I had done the other MRI with no problem. But there was no way I was going in that tube. So I called the nurse and told her and she said she’d arrange an open MRI, which she did. But then the next day it got cancelled because my insurance company didn’t know why I needed an open MRI. I spent 2 1/2 hours on the phone with my insurance company working it out so I could have the open MRI, which I did have. So I got all of the testing done. I was trying to avoid being on the Topamax when my period hit again. I ahd about 2 1/2 weeks and I knew that I had to taper off. I called to schedule an appointment and was told the earliest appointment available was October 29th, which was too late. I was told her nurse could override it though, so I literally begged the nurse for an appointment and she basically told me she couldn’t. So the next day before I left for school, I left a message for my neurologist telling her that I was going to start tapering myself off of the Topamax and I needed a doctor to help me and if she wasn’t that doctor to please let me know today so I could find a doctor who would. When I got home from school there was a message from her nurse letting me know that I had an appointment to see her the following day. She suggested Lamictal and I said not the one with the rash. (It is a rash that can be fatal and/or permanently disfiguring) I didn’t want to put this medicine into my body, but a friend of mine convinced me to try it. On day 11, I developed a rash. I caught it early and stopped taking it, but there is still a pinkish-purplish spot of discoloration on my nose. I’m thankful my entire nose isn’t purple. Now I am at 25 mg in the morning and at night. I am on day three of my period and this is the first menstrual cycle I’ve had since December 2009 without any extreme depression and nonstop crying. It feels absolutely fantastic!!!!! Some of the other side effects I experienced were eye twitchs (the elderly neurologist said I was just tired. Yeah right. I”ve been really, really tired before at times, before I was on Topamax and I never had that)., really bad back pain and pain in my joints, severe menstrual cramps, and appetite suppression. What I want to say to anyone who is being prescribed these medicines, is don’t be intimidated by the doctors. Speak up and question them. You can say no. Research the medicines. These medicines especially are trickier to deal with because you can’t just stop taking them all at once. Stopping cold turkey can bring on a seizure even if you’ve never had one. My doctor now wants to put me on Keppra. No way. I finally feel like myself again. All the doctor knows about you is what they read in your file. You know in your gut if what you’re experiencing is due to the medicine. To the pharmaceutical companies I want to say: where is the antiseizure medicine that doesn’t make me fat, stupid, tired, and depressed?