I had a brain tumor when I was 12 which left me with epilepsy – seizures. I tried Tegretol, which didn’t work well, Depakote, which caused severe depression and weight gain, and then Lamictal..which worked pretty decently. I stuck with it for awhile, but noticed I still had seizures whenever I had certain foods or had a simple cold, so I was switched to Topamax. On Topamax, I never had one seizure, but in the beginning months I had extreme joint pain and insomnia. After awhile those symptons stopped, but I noticed hair loss, poor vision, ridiculus fatigue, and that I was becoming even slower in speech and with my memory. After about 2 years on the Topamax I began to have what my doctor and I believe are kidney related issues. She’s affraid the Topamax has damaged my kidneys. I am now coming off of Topamax and starting Keppra..which has much fewer warnings and I’m hoping my vision comes back, my hair stops falling out, that I don’t feel so stupid and forgetful, that I don’t have permanent damage done to my kidneys, and that I won’t be so tired all the time..we’ll see. I want to point out that for awhile I felt that there was something wrong with me..I didn’t realize it was the medicine. It made me over-emotional and easily depressed, but I figured it was just my life complications. It’s hard to tell that it’s the Topamax. You need to remember that these chemicals are messing with your brain. I know everyone is different and reacts differently to Topamax, but I’d rather have an occasional seizure on any other medication than all of these problems in order to prevent the seizures.

I was put on Topamax in 2005 and it has been increased yearly. Unlike most on here mine was prescribed for seizures, not migraines. For the last few years I have been on 400mg. I definitely have the breathing issues and blurred vision, burning and numb feet. Insomnia has been an issue and really driving me crazy. I haven’t had much concentration or memory for much longer from other AEDs. When the nurse practitioner prescribed it she was so excited because of it’s weight loss abilities but she did tell me to be sure to drink plenty of water because of the kidney problems. Since then I have developed Kidney Disease but my primary care physician will not agree it is due to Topamax. Medicare has removed Topamax from it’s formulary list so it is no longer covered and I have read on forums like this one where people in the same boat are forced to go off it cold turkey and are having the worst side effects, seizures, nightmares, all kinds of things. Luckily I had enough to taper off. After reading all this I’m seeing it may just be a big fat blessing, get me off this stuff.

I took Tompamax for several months and it made me like a child. couldn’t pay bills and when I did I paid twice in the same month. I eventually felt as if I was losing my mind and end up getting Baker Acted and for the ones that do not know what that is it is when they lock you up in a physco ward without will and the doctor decides when to release you. Very degradging thing when you have been teaching for 27 years in a county of 25K. It also messed up my spelling ad I have major problems trying to spell simple words.

I forgot to add that I was not told about the risks of birth defects until after I lost the baby. My blood pressure was so low that I was in the hosptial. I quit taking it because I wanted to die. I didn’t care..oddly enough I started feeling better and that is how I realized what was going on. I have been hospitalized when I get the flu as my potassium plunges to a dangerous level. I missed so much work and the side effects that constantly put me in the hospital financially devestated me. I don’t think you realize what it is doing to you..that is one of the side effects..you become incapable of functioning…I have had migraines for 25 years..PLEASE DO NOT TAKE THIS THERE ARE OTHER ALTERNATIVES!!!

I used it for migraines..worst thing in my life! I had a miscarriage at 4 1/2 months..my weight plunged to 90 pounds and I had pain in all joints. Was diagnosed with medicine induced Lupus after 5 years of hell from taking it and with all of that happening who wouldn’t become suicidal? I became so depressed and developed an anxiety disorder due to my declining health at the age of 32. The adverse side effects for me did not happen all at once so it took years to put it all together.

I started on 25mg, then gradualy increased to 50mg a day of topamax. i was gradually gaining weight as i was constantly hungry all the time (for a period of 6 months).. only after 6 months after coming off this drug, the weight then came off and my normal appetite returned. has anyone else suffered this’?

I took topamax for a mood disorter for 4 years my legs hands and feet woulf go numb all the time it would be so bad it would cause alot of pain I also lost seventy pounds during the 4 years I took it I had alot of confusion would loose my memory and be confused alot of the time not being able to concentrate in school would become so dizzy at times i couldnt see or walk my eyes would twich I took the medication from age 17 to 21 I am now 24 All the weight i lost i put nearly twice as much back on and am having a hard time taking it back off causing heath problems i would like to see this drug taken off the market or atleast never fed to minors under agae 21

yes all of these reactions are horrible, but topamax list them all as possible on the web site. the medication affects the temporal lobe of the brain so for the people who’s doctors prescribed the medication for bipolar disordor or weight loss…well not very smart of them because those are not temporal lobe problems…but everyone should do their own research before taking medications

I was prescribed Topamax for fibromyalgia and was taking 150mg a day. I had been on the drug for about 3 years when I started having kidney stones about 16 in a 3 month period plus kidney surgery for a large stone. I had questioned my doctor about the kidney stones and asked if the topamax could cause the problem and he replied no, so I quit taking it and after a month the kidney stones stopped but still have the damage from it.

I was on Topomax for a year for migrains. I was getting 4 to 5 a week and they were killing me. Doc put me on topomax and I didn’t have a migrain for a whole year. I was taking 100mg once a day. I started to lose weight which my doc failed to inform me of, nore did she explain any side effects. NOR did the pharmacy when I asked. Well all was great until about 11 months into taking it, i started to forget how to spell words…I still sometimes have bouts throughout the day where it happens. I have to ask my hubby and 11 year old how to spell…how embareseing (sp?). Anyway, my vision started changing also, and I immediatly called my doc and she took me off of it. My Migrains returned and weight increased. It’s been 3 years and my ability to spell correctly or even remember how to spell (and sounding it out does no good) has not returned. I use to be so good with words, spelling, writing and now I am not. I believe that is why I have a harder time learing now. In the 11 months on it, I had no side effects and was very proactive at coming off of it, at it’s first sign of trouble. But, I wonder if I will ever be the very intelegent girl I use to be…..Please I hope anyone considering taking any drug, for anything, would research it first. We are real people telling our stories, and I hope it helps others, to investigate before taking any thing you ingest. Hope you all have a blessed day, and hope we all recover sooner, rather than later.

It’s still not right that my wife hasn’t regained her memory, her mind, her weight, and still can’t keep things together. I feel so lost. She was all I had. Now she is no longer the person she was. I hate the marketers of Topamax and the asshole who prescribed this shit for her.

My son is 11 years old and has been on Topamax now for about 4 months, the side effects are seriously affecting his normal daily activities. He has missed so much school because of the side effects and severe miagraine headaches. he takes 150mg daily, has lost 20lbs, starting to have memory laspes, speech problems and also this medication causes his body NOT to sweat. Now the school system he is in, is going to hold him back because of his medical problems, and they say they will modify his work load, havent seen that yet either, what happened to the NO CHILD LEFT BEHIND ACT, the right to a free piblic education?

I muxt be one in a million that has not had the problems that I have read about. I have been taken Topamax for 4 yrs. This is the ONLY medication that has helped me NOT have migraines. I tried the generic but had migraines again. I am so sorry that other people have had so many problems with this drug. But that is like Vioxx, the only drug that helped me with Arthritis and Seldane-D. I must be wired totally different. If topamax is taken off the market I pray I can get my hands on plenty first,

I started taking Topimax when I was about 19-20 now I am about to be 27 over this span of years my dosage started @ 25mg and was last at taking about 300m a day. I could tell that there was something wrong I to experienced the numbing and tingling of my hands and fingers couldnt sleep at night. I have started to forget alot of things that I did just a week ago, but the thing that scared me the most was my emotional change I started having thoughts that no one cared and I would be better off dead seeking was to be done with life. If it wasn’t for my boyfriend I probably would be dead by now I would go into medicine cabinets and cry but he would stop me. Then I would sit in my room curled up in a ball and cry my eyes out becuase I did not know why I was feeling this way. Arguing with my familly and him I was too emotional.I lost my brother in 2006 and thought that my feelings were because of him and continued to tke the medicine. Afraid of what was going on I started have anxiety attacks and was depressed for no reason my boyfriend and sister even thought I was BiPolar so I decided to sek help and called Psycologist (whom I see to this day). He never asked me about meds or anything and I never once really thought about it until it became more serious. My close friend started taking them and I noticed her doing some of the same things crying, mood swings and anxiety so I tried to stop takiing I have severe migrianes and this seemed to be the answer. After reading everyones response of how this medicine has it affect it scares me it wasn’t me it was the medication. Like most of you said yeah it helps you drop the unwanted weight I went from 298 to 240 in about 4 mnths. But I can feel it coming back on fast as I lost it. So this is just a small warning pray hard while taking it because I now am still going to have migraines and now I have been diagnosed with depression and anxiety I have been placed on Short term with no date to return.

I was on this drug for 7 months at 25mg twice a day. It makes me feel like throwing up when I read these posts. I am 35 and I will never be the same. I came off the drug in 2007 and have never fully recovered. I have permanent muscle spasms and I am sure that I have some permanent neurological damage. I really wanted to have another baby, but after all of this I wouldn’t even think of it. I fought long and hard and thank God for my husband, but just this past Thanksgiving I started to get my confidence back. I blamed myself for so long for taking this medication and I feel very guilty for putting myself in so much danger when I have two little girls to raise. The makers of this drug know that it is poison! The best thing we can all do is to tell EVERYONE WE KNOW NOT TO EVER TAKE THIS DRUG!!!!!! I will say a prayer for everyone that has posted here. Just take one day at a time and focus on the good stuff. Husbands, friends and family, please be supportive and patient.

I was put on Topomax in Jan 2010 and am now being weined off from it Feb 19th 2010. I had been gradually worked up to 50mg a day for migraines. I would rather have the migraines for the rest of my life than feel what this medication made me feel. I have the memory issues, I was having a hard time passing tests on paper but the , wt loss about a pund a palpable tests I could pass, I can’t climb stairs without being winded, I feel weak, I can’t sleep, I don’t want to go to work, or school and I love both my job as a Medical Assistant and my Massage classes. I have neuropathy in my legs and feet, I have no taste for food nor do I want to eat, my eyes are changing, I am shaking alot, but no headaches. Now I was not told about all of the side affects or I never would have started this medication; Further more, Now that I am weaning off this crap I am having other issues like abdomon pain and kidney pain. This medication literally was killing me, It is poison to your system and it takes a person awhile to figure out the medication is what is doing it, because while it is taking care of the migraines it is messing with your body and your emotions.

I took Topomax for migraines about a year and half ago. My eyesight has never been the same. I see tracers, flickering lights and have blurred vision. I have been to several doctors (including a retinal specialist) who all tell me there is nothing wrong with my eyes! I would never have taken this drug if I had known I would suffer vision impairment.

May I shed some positive light on this drug? I do not wish to make any attempt to negate the horrifying experiences related ere, but I want to show that this drug can work for some people. I’ve been on this drug for migraines since April 2009, and it’s been a sort of miracle drug for me. Before I got on it, I couldn’t function. For some reason, I constantly had a migraine aura, and would get the headaches at random points (every single day). I would be disoriented, confused, and unable to function at all. I flunked out of college and lost my job. My doctor started me on a very small dose — 25mg. That didn’t do anything except make my fingers tingle, so after a month or so, he increased it to 50mg. At that point, I regained a large part of my cognitive abilities, the confusion, disorientation, and aura went away. I still got headaches too often, but not every day. Instead of taking my pills in the morning, I was advised to take them before bed with a snack. When he upped my dosage to 100mg (once at night and once in morning), the snack part became crucial, because if I took them awake and on an empty stomach, it felt like I was in a lucid dream (then again, I also suffer from narcolepsy). At this 100mg dose, I have some trouble finding words sometimes — a side effect that my doctor completely warned me about. Also, I eat about half as much as I used to, which is good for me, because my condition keeps me from being physically active (it triggers migraines). I have not lost one pound, though. My fingers still tingle, but not as bad as they used to, and it’s nothing I can’t deal with. Every time I have consumed alcohol while taking this drug, I have woken up in the morning not feeling so nice. I think the warning labels say “reduce or avoid drinking,” so do that to the best of your abilities. Doctors rarely warn you about the side effects of these drugs because they make money by prescribing them. I’m lucky enough to have a doctor who tells me EXACTLY what I’m getting in to (on a side note, I went into an appointment once with a face rash, and he had me tested for lupus because he has ‘suspicions’ that one of my other drugs might cause lupus). Luckily, my reaction to Topamax was not a negative one like so many of these. I wish you all better luck with this stuff.

have been taking topamax for7 years for migraines, and am experiencing vision problems,tingling in arms and fingers,suicidal thoughts and attempts.

This is to Mama…How dare you say that most of us are not telling the truth who the hell do you think you are most of us took it for a medical problem not because we were over weight sorry i watch what i eat maybe you could try that.I was on 300mg so yes they do give high doses maybe not for you because you just wanted to lose what sounds like much needed extra weight or am i just exaggerating(by the way this is the correct way to spell exaggerating)maybe the topamax is starting to effect you.I’ve been through everything these poor people are talking about im glad you havent but shame shame on you for your lack of empathy maybe your perms to tight.By the way im never a rude person im one of the kindess people you’d every meet but because of what ive been through with this drug and to know that theres so many still having to suffer breaks my heart and then people like you which dont get me wrong have a right to their own view point but to come out and basically call us liars like i said shame on you didnt your mama teach you if you dont have anything nice to say dont say anything at all MAMA

February 12th 2010 1:27 AM 55 yr old female; in approx. April 2009 I was put on Topamax for bipolar to assist my Trileptol. I had been pretty stable prior to that except for a very mild, recent depression over my living conditions, which changed for the better a month later.Trileptol, Welbutrin, klonapin, and Ambien had been my perfect mix. During a 9-month period, I grew more and more agitated and anxious. I became extremely paranoid because I couldn’t finish my thoughts while talking and friends said that I had changed. I withdrew more from years of frequent church activities until I quit completely, my vision became extremely poor (still is), my hair began to fall out at an alarming rate and I lost 17 pounds within just a few months, which was the only up side. In October of 2009, for no apparent reason, I felt I wanted out of life and prepared to over dose on all of my meds. I just didn’t know why I was so overwhelmed. I called my fiancé, then he called rescue and I stayed in a behavioral ward for 10 days. They increased my dosage (50mg) to 75mg 3 days before I left. When I got home, I had an all out anxiety attack. I realized it could be the Topamax so I stopped the one and continued the 2 at night. I had been having terrible nightmares in my restless sleep. During my 3rd attack, I was escorted back to the hospital for 13 days. I refused them all together and now I’m back to restful sleep and I feel fantastic except for my blurry vision and my gradually subsiding alopecia. I’m just glad I had the sense to reach out before it was too late.

I am sorry to hear about the nagative experiences everyone has had with Topamax. I have been on topamax for at least a year right now I am on 100mg 2x per day. I am also taking celexa 45mg and welbutrin 100mg 2x daily. For me the positives out weigh the negatives at this time. I have suffered from severe anxiety and depression for my entire life and I feel much better on these medications. I have also seen a counselor to bulid some communication and relationship skills for the last two and a half years. With the topamax I had real bad joint pain in my fingers for the first 5 or so minths of taking it. It has improved a little but still comes and goes sometimes. I have not had any weight loss. Had all the general side effects in the beginning like memory loss (still have that), loss of correct words, substituting words that sounded simular ( real bad) so I sounded mentally challenged at work. The thing that I have the biggest problem with is back pain. It comes and goes, but it is persistant and nagging. If I drink enough water it seems to go away. It will stay bad for a few days. Dark colored soda aggravates it. Drinking 1 beer makes it worse if it is flarred up. I have never had back issues before taking topamax. I worry about my liver, but my doctor has run tests and says it is fine. I feel so good, But I would hate to damage my liver. My doctor says I need to do more group work before I can come off the medications and I know she is right. I am trying just to rehydrate and not drink any beer or soda.

My son is now 19 years old when he was 13 he was on 400mg. of topomax a day for wieght loss and to help control his mood. He went through very rough time acted like a zombie, he suffers now with deep depression he is six foot tall wieghs 376 lbs. hates how he looks can not loose wieght suffers from headaches and gets pains in his eyes. He also suffers with kidney stones from time to time. He acts as though he is still 13 and does not like to be around people even family. He has the tingleing in body as others described and sometimes he says he can not feel his legs and starts to fall. He gets pains in lower abdomen and genital area. I am going to check with our neurologist to have him tested after reading these posts.

I would much rather be on Topamax than Depakote or Depakene, Those two just about killed me. I gained over 200 pounds and developed IBS because of valporic acid and the main side effects from Topamax are much easier to manage than that for me. I think everyone needs to find something that works for them, I have a friend that is allergic to aspirin, but I would hate to see them take it off the market. If you don’t like Coke, drink Pepsi… Don’t sue Coke.

I am so unsettled with all the stories about Topamax. I was taking the drug for Four and a half years. I was on 200 milligrams a day for epilepsy. I thought all my symptoms were because I was getting old. Such as the loss of vision, dizziness, memory loss, joint pain and constant tingling and loss of feeling in my hands and feet. I had to resign from teaching for 17 years because of the memory loss and no attention span. My doctor said as long as i’m not having seizures anymore the drug is working for me. He also stated aren’t you happy about he weight loss? I’ve eventually weaned myself off the drug. I feel alot better but still have some side effects. I haven’t had a seizure lately, but if they come back I will definately choose a different medication.

I’m the the mother of my son Andrew who was placed on toamax for migranes at the age 15…little did I know of the awful side effects this would cause and changed my life forever…in may of 2008 my son was suffering from bad migranes his step-father took him to our family dr who put him on topamax and blood presure meds a day later this headaches got worst so I took him to the er and the er ran a cat-scan on him and found out my son suffered from keriari malformation and he had a mri with in 4 days and took him out of shool for the rest of the year…at first he would only take the topamax when needed but for the most of the time he would lay in a dark room w/o tv or radio and was unable to read which he really enjoyed…when he started back in school in aug he wanted to go back before he was to have surgery for his condition and the dr’s told us it was ok for him to take the topamax until the surgery that was set for sept 5 2008, to days before he committed sucide by hanging himself we had a long talk and he was telling me all the problems he was having as in concentrating, retaining info from the teachers, pain in hands and legs and could not even hold a pencil….as a mother I could only cry for him and called his nero dr and he was going to call my back after office hours….never got the call til the monday after my son hung himself that friday…and my son was never a depressed person had his whole life planned where he wanted to go to college and even plans with his friends that friday and saturday to me I have raised 3 very health and mentally stable kids and beat myself up about what happened to my son where I went wrong…but I have been reading all this info on topamax and we dont know what it does to teens never tested on them and anger’s my to thing I trusted dr’s to help my son and the only explaintion I have now is the topamax put in a state of mind that I dont even understand and I have let is my memories of him so if any parnets read this and plan on the children taking this drug PLEASE THINK AGAIN….COMING FROM A LOVING MOTHER WHO WISH SHE KNEW THEN WHAT I KNOW NOW AND THIS SAVE ONE TEENS LIFE I FEEL LIKE I MADE A DIFFERENCE

i had been on topamax for about 2 yrs before i found out i was pregnant. my doctor took me off of it when i was about 6 weeks pregnant. at 18 weeks when i found out the sex of the baby the dr also told me that my son would be born with Edwards Syndrome & would not survive & he thought we should terminate the pregnancy. my husband & i both declined. i went back for another ultrasound at 27 weeks & they told me he did not have Edwards Syndrome but he did have a cleft palate…caused from topamax. by the time a baby is 8 weeks in the womb the cleft is already formed. my son had an extremly hard time eating, it would take him 2 hours to take 1 oz of his bottle. he had surgery at 3 months to correct his lip & he gained 17 pounds in one month after his surgery because he was finally able to eat. he still needs surgery on his nose & another for oral graphing after his permanent teeth come in. i am now expecting again & praying the next baby wont have to go thru what he did.

I was on Topamax for a few yrs and every time I went on it my vision would get very blurry. By the time that I got off of it my vision went from 20/20 to 200+ You might say that I am going blind. When I went online to look this Drug up, there was a flashing red sign that said WARNING,WARNING, IF YOU ARE ON THIS DRUG CLICK HERE. Well I did and the message said that a warning went out to over 400,000 dr’s that were to tell there 800,000 paitents that it was causing slow progressive blindness. Glacoma-Myopia. After I showed this site too my Doctors they took all there paitents off of the Drug. What can be done about this as it is getting harder and harder for me with my poor vision issues.

I forgot to say in my story above my doctor told me to eat a banana a day and an orange because Topiramate sucks all the Potassium out of your body. Why the orange, not sure, but that is just what he told me. I am currently getting off this drug for my health. I Pray for everyone in these blogs and their health and their migraines and seizures. I cry at the thought of a migraine even coming on, they are horrible!!!!

I was diagnosed with Pseudo Tumors behind my eyes and have had migraines since I was a little girl. The eye doctor found my Pseudo Tumors during a routine eye exam last January. I went to a specialist and he told me I had these Pseudo Tumors due to me being over weight and that I needed to loose the weight or I would go blind, so I joined Curves and lost 25 pounds along with being put on Topiramate a generic for Topamax. At first the medication was fine then I started making a lot of mistakes at work, got laid off from my job last September, and just started having these horrible dizzy spells to the point of can’t even walk a straight line, as if I were drinking and I DON’T drink EVER! I am only 38 might I add. It scared me so bad I thought I was having a stroke, I told my husband about it and he was ready to take me to the hospital and I talked him out of it, I went outside and caught my breath, I was litterally scared to death, I am just grateful I wasn’t driving when it hit me. My doctor told me a month ago that my Pseudo Tumors were gone and that he was going to start cutting me back on this drug to half a pill a day which would be 50mg a day instead of a 100mg to whean me off of it. I am just concerned about the long run benefits this drug has caused me! Someone needs to help us! I have also been sleeping alot during the day and having numbness in my right hand mostly, mainly my fingers. Doctor told me that was just a side affect and would go away but it hasn’t yet. It comes and it goes. Has this drug damaged my heart, my liver, my nervous system?

I started taking Topamx in 2001, I took it for almost ten yrs. i was takin off of it in Aug.2009, and on Sept. 26th 2009 less then a month later i had a stroke. My doctors ran ever test known to man kind and could find no reason for the stroke. I was in the hosp. for six days then went rehab for over a week. I never even thought Topamx might have something to do with my stroke until i seen something about it on t.v. three days ago (Jan, 20th 2010), just four months after my stroke.

I was on Tomomax for about 5 weeks moved from 25mg-300mg very quickly. On New Years eve 2010 I had a high fever for 3 days I thought I was dying it was not strep throat I was checked. The following days I developed white blisters in my mouth (stomatitis), eczema. My eye lid kept moving back and forth. I quickly came off of them when my pharmacist said it was the drug doing this. My neurologist said to reduce 50mg every 7 days but reduced 50mg every 4 days. I have been off of them for two weeks I still don’t feel good the blisters and sore throat is gradually healing, the palms of my hands are going numb. I also get a numbing feeling down my legs my eyes are jumpy. What is wrong with me has it done permanent damage?

This post is regarding my 9 year old daughter that has been on the generic form Topiramate 25mg x2 a day since the end of August 2008. She has a history of medical problems. Age 6 she nearly died, no warning but had a brain tumor the size of a grapefruit causing a midline shift. 2 brain surgeries, a surgery to put a port in her chest, chemo that made her hair fall out and vomit over a period of a year, as a summary we are no strangers to the specialtists and doctors. Having went through that at her 2nd year of cancer camp last year she contracted Swine Flu. High temperature caused a seizure and put her in the hospital last year right before school. The nerology team put her on topamax at this time. Only other drug was clonidine HCL .05 x2 for the neurohypertension from other medical things. We were told to follow up with neurology in 6 months. Before camp Brittany was also experiencing very bad migraines. Initial complaints of pain in her one eye and her screams like someone had a knife in her head. Short from pain medication only way to resolve those were having her fall asleep. We were told that this topomax would not only help with any migraines but also help any additional seizures because now her thresh hold had decreased. Every week was great we were amazed at how she would start to have slight eye pain and might feel a little nauseous but no sharp migraine would follow. GREAT!! wonderful drug it’s working……or so we thought… We just had some snow over our kids winter vacation from school so there were off school for a total of 17 days so when she started complaining of feeling like she couldnt breathe, or getting dizzy, leg tingling almost out of the blue we thought it might be abit of seperation axiety. Being in the medical field myself i didnt imediately put it to anything. These feelings increased for her. Always with episodes of her feeling like she was having breathing problems. She had to be with me or my husband. It wasnt just that, these “episodes” would happen even if we were in the same room with her. No more sleeping in her bed she had been in our’s for almost 2 weeks. She was worried all the time, every day seemed like it was getting worse. As before mentioned after everything she had already been through we also thought perhaps she was having a sort of emotional breakdown and because she was getting older it was all hitting her. Still continued, she couldnt go to school, if she did go she would have to come home, on our way to her oncology appt 15 minutes away from the hospital she was almost hysterical asking what was wrong with her, someone please help her. The doctor’s all said she was fine maybe she needed a counselor. We called and the first appt available was the 29th of this month. I took time off of work and couldnt believe what was happening. It was like I was watching my daughter lose control and all the doctors kept telling me was that if she got to a point i couldnt calm her down was to take her to the ER and request an emergency pysch evaluation. I was horrified until my husband started to think of her medicine. I kept telling him that she had been on it for like 5 months now, no way could she be having any side effects from it out of the blue like this. That was Thursday Jan the 15th. On Friday of course the episodes continued and towards the evening as she was sitting in a chair crying i was trying to distract her by making her stuffed animal dance and she started to giggle. I thought, Yes she is comming out of it when all of a sudden like a light switch she let out an angry scream, clenched her teeth and grabbed for the animal I was holding onto. I felt her mouth on my arm but thought she was just playing until I felt her teeth bare into my wrist. I thought OMG my kid just bit me. This realization almost hit her and that led into more hysterics. My husband was on the computer and he said I had to go look and read the forums he pulled up. Sure enough I sat there as my husband tried to console her and I read with amazement. This drug Topomax – generic name of Topiramate….other people were having same side affects talking about the ANXIETY level increasing, the loss of appitite (she hadnt been eating much the past couple days), so many similar things until I hit paydirt!! Many people taking this drug, have had side effects occur months into taking it !!! BINGO!!! Something had to be done!! Nobody was listening to us!! I told them what she had been through and how it was like something was taking over my daughter and when we brought up the medicine they all said it couldnt be it!! BUT!!! that night we as parents made a choice, CUT her medicine in half. Thank God I have some medical knowledge and knew not to just stop it. On Saturday my daughter actually played with her sister again for 20 min here and there. I was waiting all day for an episode to occur and NOTHING!..On Sunday I even took a shower and came out and had to go FIND her to check on her. Again playing in her room with her older sister. I was shocked. On Monday she ate a WHOLE bowl of soup!! More playing with her sister for an hour or more on and off!! Yes!! It was like I had my little girl back !! We had her neurology appt on Tuesday this week and they just scoffed at us, because of course it couldnt be the medicine but told us that giving it to her once every morning at the half dose, we could taper it off and this Friday will be her LAST dose!! We have already informed them that she will NEVER be put back on this medication!! The told us they were skeptical that it was this medication but all I know is that I have my precious girl back and the anxiety that was taking her over I havnt seen since Friday evening. I dont need a medical degree to realize that is not a coincidence!

I am so sorry to hear of the devastating problems you have had to endure with this. But with hearing your story it really makes me concerned. I have been on Topamax for over a year now maybe longer. I am only 35 years old and sometimes my husband thinks I am crazy because I have the hardest time remembering anything. I start paying bills and if I walk away I have literally forgotten which ones I have paid if I don’t write everything down. i have 4 children living at home and it is tough when I seem to forget so much. Sometines I just sit and cry because of the way I feel because of the memory loss. I am now going to talk to my doctor and I guess we will try something else because my miagranes are sometimes unbareable. Again thank you..

I can’t believe what I’m reading. I just went to the Dr. not even a week ago. He prescribed topamax without even blinking after i told him I needed to lose weight. I’m overweight, trying to get pregnant, have high blood pressure, and have polysistic ovary, can’t sleep already and i’m scheduled to be tested for sleep apnea. So ive been taking it for 6 days and the tingleling in my feet face and hands does not away at all… blurry vision.. can’t concentrate.. i have already blacked out 3 times.. and it’s only a 25 mg pill twice a day.

I had a fall injury in July 1999..falling 18 feet off a ladder in the warehouse..You can only amagine the injuries I substained…one being a concusion..After the injury, spending 6 days in the hospital, and dealing with hand, leg, head, back, and neck injuries..I had vertigo as well for (seems forever!) Ofcorse..I became very depressed..I was seeing a Neuro. Phys. He said I need to go on something to ease the tension ..I was put on Zoloft. 2002..I was diagnosed with Breast Cancer…thing got even worse..I developed a blood clut in my left lung from the Tamoxifen..spent another 6 days in the hospital..and was on comadin for almost a year..My Doctor decided sence I was afraid of the zoloft..to change my medison to Topamax… I took that until Sept. 2008…Too many changes came over my mind and body,,Headaches were very severe ..I am always using eye drops, my kids say I never can remember anything! (They tell me I have some-timers desease. I tried to laugh but that really hurts.) My eye vision had changed and I am always looking to get stronger glasses. I have always thought that my problems (so I thought) were because of a head injury…the forgetfullness has really been hard..(trying the find the right words to come up with..) As I said I took myself off of the topamax very slowly…and to this day …. I have not been the same. BE VERY CAREFUL!!!!!

I began Topamax in December 2001, for the treatment of severe migraines. I was under the care of a neurologist. Initially, the dose was 25 mg 2 x day; increased to 50 mg 2 x day, with directions to raise dose and lower back to 50 mg 2 x day, as needed to control migraines. The dose was not to exceed 100 mg 2 x day without first consulting the doctor. Almost immediately, I began to feel chronic pain in the left side of my neck. That Spring the dose was raised to 75 mg to 100 mg 2 x day, as needed, two times, to control migraines. During Summer 2002, life at work became very difficult, resulting in the need to increase the dosage once again to 75 to 100 mg 2 x day. The culture of the corporation was antagonistic, and an internal HR survey revealed a complete lack of trust between employees and management. The effects of the Topamax exacerbated the situation. In August 2002, after a 20 year career, I lost my job. Financially, it was devastating, though I treated finding another job as a job and searched 8 to 10 hours per day. As you probably guessed, I was over 40 and the timing was horrendous (invasion of Iraq). After working 2 long-term temporary jobs, I went back to college to obtain a second degree in January 2006, while still taking Topamax. At this time, I began to notice the cognitive impact of Topamax. In the beginning, I thought I just couldn’t make the grade anymore in a classroom. After all, my confidence was in tatters, and it was getting more and more difficult to rebound after a failure. In May 2006, I made the transition to another college close to home that had a similar program, but one that would allow students already possessing a degree a work full-time while completing the additional requirements. This is when the cognitive effects of Topamax dealt the 3rd devastating blow. To complete all degree requirements, candidates were required to pass a State Board. The area that I had chosen had always come easily to me, though it was widely recognized as the most difficult area to pass. Others are correct when they state that with Topamax, one begins a task, then simply ‘forgets’ what one is doing. Tested areas that should have been simple, were difficult, and though I would begin to solve the problem correctly, I would either stop before completion or change methods once started. I failed the exam at least 8 times before realizing that Topamax was impairing by memory. It was brought to my attention by a loved one. Under the influence of Topamax, I would probably not have noticed. It took approximately 3 months to wean myself from the Topamax, and during that time, I challenged the test an additional time before passing. Interestingly, the score when up in excess of 18% after reducing the dosage to 25 mg 2 x day. After discontinuing Topamax entirely, I passed the exam. One week later, I made an almost perfect score on a second required exam. I am very grateful that the exam is over, but Topamax cost me substantial amount of money including: a lost career of 20 years, 3 years of job searching during a terrible economic downturn, exam fees of approximately $1200.00, lost wages and contributions to retirement accounts for three years (which is cumulative) and the immeasurable pain and embarrassment of repeated failure, self-doubt, and loss of self-esteem. The makers of Topamax could have spared so many with clear warnings on the packaging. (I, too, read the information provided.) Pharmaceutical companies should be required to provide each doctor with evaluations from independent sources listing all side effects and benefits, rather than their own promotional brochures.

TOPAMAX should be banned!! It is a very dangerous and posioning drug and is not worth taking for either migraines or weight loss at all! The excessive weight that is lost comes with some serious and very permanent side effects. In my case, I was prescribed Topamax by my Neurologist for the prevention of migraines. After 4 years on Topamax at different dosages that never exceeded 200mg a day, and being off the drug for almost 6 months, I now have a fifth of the hair I used to have on my head and eyebrows (and a different texture altogether), have permanent memory loss and blurred vision that never ceased and a metabolic disorder due to the crazy weight changes before and after. I am a TV HOST/ACTRESS!! Imagine me hosting a show or trying to work on a show with no memory and no hair!!! STAY AWAY FROM THIS DRUG. YOUR DOCTOR WILL DENY THE HORRIBLE SIDE EFFECTS AND BLAME IT ALL ON STRESS. DON’T EVEN TRY IT. BY THE TIME THE FIRST HAIR FALLS IT WOULD BE TOO LATE TO GO BACK!!!

I am very shocked at this news, I was in a car accident which caused me to have severe migraines and I was given Topamax by my doctor and in October of 2006 while I was still taking the medication I tried to commit suicide. I sent my children to my sisters home so that they would not find me the next morning.

I have been reading everyone’s posts and find them quite fascinating. I have been on Topamax for 3 years as a preventative medication for daily migraines. I started off at 50 mg a day and now take 100 mg a day. I also take other migraine medication as I still get frequent migraines. I also take anti-depressants for mild depression. I am 39 years old and have taken those since I was 15. Lately, I have noticed what I thought to be mild lapses of “missing time”. I would seem to forget or lose hours where I wasn’t quite sure what I had been doing. My daughter would also notice that I would come to stoplights and either stop on a green light or go on a red light. I seem to get confused with things that should be normal, everyday common things that we all take for granted. I lose words that I want to say…I can see them, almost hear them, but I just cannot form the words to say them. My co-workers laugh at me because I forget how to use the fax machine or the phone. I, of course, write it off to being stressed, but I am wondering if it is Topamax related? My hair has been falling out by the handfuls and, though I have not lost weight, foods taste so differently now. Most everything has a metallic taste to it. I cannot drink anything carbonated as it leaves a burning sensation in my mouth and throat. Food just is not enjoyable any longer. I also have tingling in my face and scalp. I have even had my daughter check my hair for lice because I feel like something is crawling in my hair…though there isn’t. And the fatigue and mood swings that I feel is almost unbearable. I will definitely be doing some further investigating into Topamax. I appreciate all of your posts!

My best friend was on Topamax for depression as it is also a “mood stabilizer”. I have no doubt this medication drove him to the edge and so he committed suicide.

i have been on topamax for 8 years. i have been taking it for epilepsy and have been controlled on it since 2001. i was taking 200 mg twice a day up untill i was told by another doctor that i was prescribed to much. i had many side effects of memory loss, hazyness, loss of concentration, i felt heavy headed and couldnt have a conversation that made sense because of loss of words. i have been trying to get pregnant for 7 years and i cant seem to get pregnant. i have been to fertility specialist and nothing works. i also have no energy i want to sleep all day. when i went on topamax i was 18 and wieghed 150 at being 5’3′. I went on topamax and was weighing 110. i was very skinny and didnt feel healthy. as of 2008 i lowered my dose myself because the doctors were giving me the run around about new medication. so i thought well i may as well stay on it. now i am terrified to even take my pills. if anybody out there is on this medication for what ever reason please research the recalls and warnng information.

I went on Topamax when I was 21 for severe weekly migraines. I started at 50 mgs two times a day and was quickly stepped up to 100 mgs twice daily. When I began taking the pills I weighed about 135 lbs and was a healthy 5’5 college student. Within one year I had lost 45 pounds and weighed in at 95 lbs at the lowest point. I felt hungry but my appetite was completely diminished. I had tingling in my face and hands regularly. I would get confused and lose my train of thought in the middle of a sentence. I couldn’t remember simple words such as ‘belt’. I once got lost driving to work, completely missed my exit on the highway, and didn’t wake up from the haze until I was 10 miles out of the way. I was so scared when I realized that my mind had basically just shut off for a bit. My mother is the one who finally realized how I was starving to death and started getting worried about my safety. When I approached my neurologist about the symptoms he seemed really agitated with me and told me I was overreacting. My mom made me go back and ask him how to ween myself off the Topamax safely. Within weeks of being completely off the pills, I was back to 120 lbs and was actually enjoying food again. My short term memory slowly returned, I was able to remember words, and my ability to think clearly returned. I am amazed to hear that others had the same experience and am angry with my neurologist for not better explaining the side effects of this drug. Luckily, my migraines are much better and I now manage them with magnesium, scented oils, caffeine, rest, and eating healthfully. I had a doctor run blood tests to determine my sensitivity to certain foods and have found that managing my diet and steering clear of certain foods works amazingly well at keeping my migraines away. Sometimes I sill get the scintillating scotoma and even the headache but they are very infrequent and mostly triggered by extreme stress or exhaustion. I would advise anyone who is taking this pill to look deeper into the side effects. My father, who took Topamax for seizures, expereienced the same symptoms as me and finally encouraged his doctor to try a different medication with great results. If you must take Topamax, just stay informed and monitor yourself. It’s amazing to me how it snuck up on me and made me very sick before I even realized it.

I was prescribed this medication from the neuroligist to combate frequent migraines stating at 15mg for 6 weeks then up all the way to 50mg 2x day for a year, and then at my annual she decided to go with 100mg 2x a dayI have been on topomax for 2 years, and 11 months ago it was switched to topirermate. I am 5’7′ And was 220lbs. and have lost 43lbs. I am normally a heathly 30 year old Teacher. In the past few months I have been constantly sick with stomach issues which my GP gave me prevacid for gas but I know its something more. I used to be a happy person but know find myself very irriatable, espcially with my family, And my once thick hair is falling out in clumps. My insurance will cover a wig if I have cancer but not due to a faulty medication. I could have cared less about lossing the weight. I still get migraines maybe not as many but when I get them I treat them with Zomig. One thing I seemed to have noticed is once the dosage goes over 100mg a day that when all the weird side effects come out. Does this happen on the actual TOPOMAX too? Toperimate is ruining my quality of life, as I get to go to work with bald spots in front of students, when I can work as I still get the darn migraines, contsant stomach pain.

I HAVE BEEN ON TOPOMAX FOR 3YRS. I STARTED OFF AT 50MG DAILY THEN 100MG DAILY NOW IM AT 200MG DAILY FOR SEIZURES ALONG W/DILANTIN..AS THE YRS HAVE GONE ON I HAVE INCREASED HEADACHES, BODY PAIN, JOINT PAIN ,VISION HAS WORSENED AND I STAY SICK TO THE STOMACH.ALSO TINGLING IN MY ARMS AND HANDS MY LEGS AND FEET IS SO EXTREME SOMETIMES. THIS YR THE HEADACHES AND DIZZINESS GOT SO BAD THAT MY DR PUT ME ON A METHYLPREDNISOLONE WHICH IS A STEROID THERAPY TO HELP BUT THE EFFECTS OF ALL THAT JUST WAS TERRIBLE, MY FAMILY NOTICES ALOT OF MOOD CHANGES AND I FEEL SO DEPRESSED AT TIMES AND HARD TO KEEP CONCENTRATION ALOT. I STAY TIRED ALOT AND WHEN I ASKED MY DR IT WAS SAID THAT IT WAS JUST SIDE EFFECTS, BUT I NOTICED THAT I ALWAYS TEND TO BE AGITATED AND MY NERVES ARE SHORT..I WAS NEVER THIS WAY ALWAYS HAD PATIENCE AND NEVER PRONE TO BE AGITATED BUT ITS INCREASED TREMENDOUSLY…MY SEIZURES HAVE INCREASED A LITTLE MORE ESPECIALLY FOCAL SEIZURES ..I THOUGHT THIS DRUG WAS SUPPOSE TO HELP CONTROL THEM NOT INCREASE THEM

I was on LOW dose –75mg, of topamax – for about a year for migraines– almost immediately had twitching under my eye begin — dr said i was tired — i have been tired for 20 years. thank goodness my co-pay for this drug went so high i could not afford it – i weaned myself off — twitching went away within 2 days!!!! I am still tired!! ALSO – MY HAIR HAD/HAS THINNED HORRIBLY. I have been off topamax now for about 9 months — don’t see my hair growing back and it still falls out a lot when i dry it. I can twirl it all up and pin it with a baby clip. DON’T DEPEND ON DOCTORS FOR INFO — THEY DON’T TELL, DON’T KNOW, DON’T CARE — IT IS ALL ABOUT $$$$$$

For Mike, Topamax and Depakote is a toxic combination. All you have to do is go to the FDA site and do a search or do a search of Topamax toxicity level’s. Adding topamax to Depakote is like adding alcohol when taking ambien it increases it’s intensity. Your son’s level’s should of been checked his ALT’s on a monthly level and ammonia level. I would have them get a tox-screen or give you the tox-screen they had to do on your son. I would get an attorney to investigate this.

I was prescribed topiramate in August 2009 for a 9-year-old sleep disorder that did not respond to other medications or therapy. The topiramate was miraculous! It cured my sleep disorder literally overnight. But the cure came at an enormous price: I quickly became a mere shell of who I had been prior to initiating topiramate. I went from being a successful pharmaceutical sales representative, a wife, and mother of two boys to someone who could not get out of bed to go to work, run errands, parent or accomplish the simplest of activities. I weaned off topiramate about three weeks ago and I’m am frightened that still suffer side effects severe enough to keep me confined to bed most of the day. I am overwhelmed at the thought of making a phone call, taking a shower or making dinner for my family. I am unable to concentrate, articulate thoughts and feelings or remember things that have occured. Most of the time I feel like I’m a vegetable – there isn’t much going on inside my head. I also have an incredible sense of apathy about everything. Did the three months I took topiramate do permanent brain damage? I don’t know what I can do to restore the person I was before the drug. My family and friends have seen such a drastic change in my personality and productivity since I started taking topiramate, and they understand the problems I have now are related to the medication and are beyond my control. I had no idea when I was prescribed topiramax that the side effects could be so devastating. I NEVER would have gambled on a drug if I had known I might be permanently nuerologically impaied.

In May of 2007 i was prescribe Topamax for migraines,in two weeks i was totally blind.In one day i went from seeing to total darkness.I went to the ER with what i thought was a bad migraine, but what i realized was it was the pressure in my eyes that was causing the pain. Long story short the doctors at the Eye Foundation Hospital in B’ham,ALknew that it was the Topamax causing my lost of sight.I was totally blind for six months had to have 4 eye surgerys to restore my sight and also lost my job.The Lord was on my side i did get my job back,but my eyesight is not what it use to be.I have a hard time driving at night i have to use eyedrops daily to keep the swelling down in my eyes my depth perception is not good. The thing that brothers me the most is i can’t get compensated for what happened to me. I don’t care about getting a lot of money,I wish the drug company would pay off all the Dr bills i am still paying.Its a shame what the big drug companies can get away with

I began taking Topiramate 25mg tablets in June 2009 for migraines. I was already being treated for depression. My depression worsened and I became suicidal, even planning the date I was going to kill myself. I couldn’t understand why my depression symptoms became worse. I saw the information regarding the lawsuit on TV. I have been suffering from worserning / blurred vision ( I was diagnosed in 2006 with a left eye vein occulsion, depression and hypertension after working in a hostile work environment for 18 months).I have not worked since March 2009 due to the migraines and depression. I have been unable to get out of bed, had memory loss, confusion, severe join pain, unable to concerntrate, and can not drive my vehicle without being extremely nervious. I have insomnia and even though I take medication to help me sleep. I only sleep 2 hours a night. My heart beats so fast and my thoughts race uncontrollable. Some nights I pace the floor all night. I am a Supervisor and I have to give out post assignments. My mind goes completely blank and if I don’t write down everything I forget what I was Saying. I can’t remember how to do previous jobs I have done in the past. I also, have forgotten all the information I have learned in the 15 years i have worked for the faculity. I can’t even go up for interviews because I can’t remember the info I study. My mind just goes competely blank and when I try to talk I soud like an imbical. I have been to see numerous doctors and had various test done. They don’t know what is wrong with me. I am not taking Topomax now because it did not help my migraine. My migraines are 24/7 and getting steadiy worse. . I take Bupap an it eases the pain better than anything I have tried. I am glad I finally found other people suffering like I am. I thought I was loosing my mind. May god have mercy on us all.