Topamax side effects

In August I started taking Topamax and every week i am to up the dosage now I am taking 50mg in the morning and and 50 mg at night because my headaches was so bad that I had to quit my job because I couldn't serve food and vomit at the same time. Now that my headaches have gone from everyday to about every other day I have noticed the indigestion. Because I had because sick so long the doctor suggested I had a reflux and it would correct itself.I started looking at all the medication I was on and the list from the pharmacy never indicated indigestion on as a side effect for Topamax.My appetite is non.Weight lost about 20 lbs but I could afford that and then some. I try not to use the upstairs of my home if no one is there because of the dizziness.And simple chores around the house go undone.I have bounce $130 in bank fees this month and can't figure out how and gave the finances over to my husband to keep up with and I am a math major in college this semester.This is how bad things have gotten some simple words i can't recall how to spell . I have to use the dictionary. It's bad.

Ive been on Topamax for almost 3 years. Was on 100 mg/day for 1 1/2 yrs. Couldn't take the spaciness so I went off of it. A new Dr. put me back on 50mg/day 6 months later because my headaches were so bad. I'm doing great. Headaches are less frequent. Maybe 2-3 per month but not so violent. But lately I've developed this twitching under my left eye. It's constant. Could it be the Topamax???

At 50mg a day, Topamax, taken at night, makes me feel very heavy, tired and numb all day. I have been on it for 3 months so far. I also have other side effects mentioned in previous posts. I hate feeling tingly in hands and legs (from the knee down) and sometimes in my face. It is supposed to go away - soon? I get a bad case of my legs falling asleep in almost any position I sit in other than total upright (which is not comfortable). My lifr-long instiable appetite is hardly affected. I'd say maybe a little bit. I do notice taste difference in drinks and food, sometimes more than other times. I need this medicine for Migraines, it has help relieve my symptoms, but I think I need to continue to increase the dose because I still get Migraines and feel pressure in my head a lot.

well, i guess i am not alone. this is the second time i have been on it. i weighed the pros and cons and figured that the migraines were worse than the depression, mood swings, and the inability to compute simple math. well, i feel differently now, and i think i am going back off of it again. my sex drive is also gone, but i have had a problem with that and the depression for years, just not this bad. i feel i have yelled at my children way too much lately, cuz it is making me so crabby, and i don't think that it is worth it. after reading some of your posts, it has helped me make the decision to go off of topomax for good. i could deal with tingling, bad taste, and weight loss (the only good side effect), but not the other horrible effects.

I've been on Topamax for a year and a half now. I started with 50 mg. and am now up to 100 mg. I did have the usual side effects of the tingly fingers, feet and arms the first six weeks and then that went away. Food and soft drinks tasted funny for a while, but that too went back to normal. I did lose 15 pounds and I didn't really have it to lose in the first place, so I upped my workouts with weights to compensate. My migraines have gone from five a week to one, so it's helped me BIG time being on this medication. My eyesight, however, has suffered. I used to have 20/20 vision. I now need reading glasses. I'm sure it's because of this medication, but to be honest, I'll take the glasses over being in that severe pain five times a week.

I am almost 41, and have had migraine headaches most of my life which I could manage with 800mg of Naproxen Sodium, or a Norgesic Forte, and when Imitrex came out, I could just administer that. Six months ago, my headaches got so frequent that I had to start taking my Relpax (similar to Imitrex) and/or Fioricet more than 2X per week. According to my neurologist, this is a no no, as both of those meds can couse rebound headaches. He started me on Topamax, 50mg per day. It did nothing. He bumped it to a 100, nothing. Now I'm a 200 mgs, I am still have a migraine in left temple as I write this. I have the tingling, the daytime sleepiness, but my mind is fine, and my appetite is just swell (regretfully). What the hell am I going to do now? Ask him to bump me up to 400 mg? Now I have these headaches every "F"ing day, and I can't take anything. I just have to suffer.

Topamax is NOT working!!!!!

Topamax may help some people, but for me it is poison and I've tried it twice! This second time around I tried it longer and went to higher dose. I'll just list the bad side effects that I had this time, although I had some of the same the first time. By the way, I took it for migraines. The first time a couple of years ago I was on 25 mg a day. Then, this time decided to try again since migraines were so bad thought I would give it another chance. I went from 25 mg to 100 mg a day slowly increasing as directed. The side effects started occurring right after the first couple of days, numbness in my hands, jaw area. Then sometimes numbness in my feet. Started to feel bloated in my stomach, waistband on pants a little tighter, and also noticed a little fluid retention in my fingers and ankles. I would forget a word here and there, or when typing, type the wrong word. Eventually it got so bad that I would sit there and think to myself, ok I know this is the right word but should I actually say it or type it? Friends thought I was in a bad mood when I wasn't. I would get very very quiet and I didn't want to leave the house. Thank goodness my husband was understanding. We knew it was the drug. And we knew I would stop taking it! Sometimes my back and sides would ache which is unusually for me, and I drank a lot of water. I lost my appetite completely but still did not lose weight at all like others say they do, if anything I think I gained in fluid retention. The skin on my ears started to burn and itch, then the skin on my face started to itch. I felt nauseous almost every day. I also felt like I was completely encased in cement, this is about the only way I can describe it. You just do not feel like yourself at all. You have that foggy brain feeling people mention. You know you don't feel like your normal self, but you feel so lousy you almost don't care. It's a scary feeling. This was all in one month, I figured I had given it a chance but that was it. Even with the warnings about seizures I quit taking it immediately. I would rather have migraines than have all of those side effects. Also I wonder what is it doing to your other vital organs if it can have those effects? For those who do not experience any of this, I'm glad, but I have to say very surprised.

I have been on Topamax for 2 months and it has been horrible. I started at 25mg at bedtime and worked up to 50mg at night and 25 in the morning. I wish I never took it at all. I have had numerous migraines with the medication except now my tongue goes numb every time. I can't remember anything and I am in a fog all the time. I had to take a trip to the emergency room for tachycardia that occurs every time I stand. It goes up from normal to 166bpm. The cardiologist insists the Topamax is causing orhtostatic hypotension. I stopped all of the Topamax on Monday and it is now Saturday and I still feel horrible. Migraines are horrible but being stuck on your couch all the time because your hr increases sharply and you feel like you are going to pass out is worse. My hands and feet tingle all the time. I feel out of breath and I have always been very active. I now feel anxious all the time (never like this before). I feel like I am not myself and I am going crazy. I do not trust myself because I do not feel like myself. Has anyone else had these symptoms? Do they eventually go away? The cardiologist can't guarantee that they will ever go away.

I have been taking Topomax for migraines for about 3 years now. Staying at the 75mg at night dosage. Going to 100mg just does not work for me. GI disturbances too severe. Diarrhea mostly. Early on same as a lot of the other reports, tingling in hands, bad tasting soda, some hair loss, and intermittent upset stomach and diarrhea. Memory not as good as without the med and balance a little off. All of these have diminished in intensity and frequency. Up side, weekly headaches that forced me to go to bed gone. Being an irritable wretch because my head hurt, was about to begin to hurt, or just got over hurting gone. At this point in my life the pros still outweigh the cons and as long as that is true I will continue with the regimine.

I have been taking 25 mg. at bedtime of topamax for the last week. I was prescribed topamax to end my chronic headaches. The last week has been very difficult for me. In just 7 days I have gone from being sharp, aware, motivated, focused and in control... to scattered, unable to focus, can't remember my pin # that I have had for 20 years, stop mid sentence because I can't remember what I was trying to say, unable to hold a conversation, unable to think clearly, unable to interact with my children. My family says I have turned into a zombie. I am not safe to drive and cannot work. I did not take my topamax last night and won't be taking it anymore. I would gladly have my headaches back if I could just feel like myself again. I had no idea it would affect me so negatively in just one week on such a low dose. (25 mg)

Be so careful before taking this medicine. My doctor didn't discuss any of these side effects with me, but I did research the drug online before I took it and was aware there were serious side effects, but it never seems that serious until you actually endure the side effects for yourself. The drug is not for me.

I was thrilled to lose about 15 pounds so fast, but lately I have noticed so much hair in my brush that I could make a wig. I am not willing to lose my hair or eyesight. Working in pharmacy, when this first came out I put myself on it b/c I heard about the weight loss. I also have had a few seizures and an MD prescribed it, but I know what caused those seizures, some bad behavior, and I know im not epileptic. thought they told me once you have one you're prone to them. As long as I stay a 'good girl' i have had no seizures. It sucks thinking about gaining back this weight though. Willpower and the gym I must, i must.

I have just started taking this drug today for drug and alcohol cravings. After reading all of the testimonials about the drig on this website, I am definitely scared. I definitely won't go up to more than 50mgs a day. I just weighed the possible side effects against giving into a craving that might kill me. It took me 3 weeks since I've had this medication to start it. Wish me luck! Mahalo and Aloha from Kauai!

oh my God I wish I had read this sooner I thought I was going crazy! it seems like the doctors just don't know about the side effects of a lot of these drugs, because I have had ALL of those symptoms- the tingling, the muscle pain, the aches, the feeling of bugs crawling, the itching, the one I have the most now is pain in my arms and legs now to the point where today I cannot lift my arms past the front of my chest or over my head. So I barely stand the shower and barely get ready for work. When I told my doctor this last week, he said, hmmm, I don't know, lets just give it a few more weeks and see. I've been on Topomax for 5 weeks. I started at 25 mgs and worked my way up to 100 mgs slowly. Each time I add more mgs I have more EXTREME fatigue, and spaciness, dizziness, etc. My legs and arm and back pain did not start until the past 2 weeks. THIS SUCKS. But having migraines sucks too. I have lost weight. But I just don't know that I can live like this. The migraines are new for me, as a result of an accident I was in on January 26th. The side effects of the Topamax outweigh the pain from my accident. I might have reconsider taking this. Although I must say, this drug is the kind of medicine that definitely takes a while to understand how it will work for you. A lot of the effects will wear off. A lot of my spaciness or "Paula Abdul" moments as I like to call them, are getting so much better. I'm sitting at 100 mgs and really don't want to raise the dosage at all. I will talk to the doctor and see what he says. That's the other thing... doctors tend to give people too much or dont know how much to prescribe. Starting people off at 50 mg is too much. I take mine around dinner time as it tends to kick in around sleepy time and if I increase I ALWAYS increase on a Friday so I can regulate over the weekend. PS. I also have blood clots in my legs so being on Coumadin doesn't help things either!
GOOD TIMES!
I'm just so glad I'm not alone!!!
Caroline

i have bee on topamax for 2 years started out low amounts now i am up to 100mg at night and 50mg in the morning and i will take 50mg when needed for a headache if i get one thru the day . that is all i love it. no more in the bedroom all day missing life sick. no more head splitting open just shoot myself painful headache. i feel great and i function raising three boys two teens and one pre teen. im not saying that they don't give me a migraine but i can control them thanks to topamax. i hope it never loses its effectiveness because i will lose my piece of mind. oh before i go ,weight gain ! i am an semi-active person. i did not gain the weight at first but as i got older i did . but i work it out and keep going. i would rather 10 lbs more on my tush than a migraine busting my head open. so work out a bit ,go for a walk ,choose a good eating regimine, and lose your headaches.

Initially, numbness and tingling in extremities which subsided, but memory loss and loss for words is very uncomfortable, and my neurologist suggested caffeine every AM to compensate, which helps some, but not enough. Difficulty reaching orgasm has become very frustrating as a side effect, but is better than the horrible headaches every day. What a choice!!1

I have been on topomax for nearly a year and have many of the same problems you guys have but a new one has popped up on me that scared the shit outta me and no one can seem to figure out what is causing it.
During sex just before orgasm my brain felt like it was going to explode!!
All I could do was hold my head in my hands and roll on the bed. this pain lasted for almost 8 hours. the next day i felt fine and went motorcycle riding and while racing my buddy and while passing him(More Excitement) It hit again and it was all I could do to stay on the bike. Went to the hospital and they did cat scans mri ,mra tests and have found nothing wrong w/my head .So my ? is could this be coming from my topomax??

Topamax can cause blindness. Please read about all of the side effects of your antipsychotic meds carefully, and never think you are immune to them. These are powerful drugs, and no one truly knows how they will effect each individual brain.

Hello, I started taking Topamax a year and a half ago for my migraines ( I was getting them almost daily- still am). My neurologist started me out at the normal dose of 25 mg a day and kept raising it up until I was at 100mg twice a day at which point I just quit taking it because I felt like it was just making things worse. Anyway, in the beginning, I did lose my appetite and things tasted terrible... especially carbonated beverages. I lost probably 15lbs. I quit taking the topamax for about 6 months and gained about 20lbs. I just started taking it again about 2 weeks ago and my appetite has actually increased. Has anyone else experienced this? I am hungry all of the time. I did not have a problem concentrating or remembering things last time but this time I do. Funny how it effects you differently each time you take it...

After daily pounding migraines for ten months, the side effects of the tingling fingers, tongue, lips and toes; the inability to find words, the weird way certain foods taste, are all very do-able. What does worry me is the way I can get incredibly depressed, but the anti-depressant (Wellbutrin) I've been taking for more than ten years just suddenly started making me worse. I just keep telling myself that at least I don't have a headache. It definitely makes it worth it. The headaches were so bad, and thanks to the topamax, they're gone.

I'm 20 years old and take Topamax for migraines. It works miracles as far as reducing the number of migraines i get. I went from 4 to 5 debilitating migraines every week- to maybe 1 or none. I'm supposed to be taking 75 mg a day but sometimes i only take 50 b/c the lack of concentration holds me back from doing every day things. Instead of feeling awake during the day, i feel like i'm walking through a dream. The dizziness is bad too. Sometimes when i go to stand up i get so dizzy i will actually fall into a wall or all the way to the ground. The scariest thing is when i'm driving and forget that i'm supposed to be driving. It only happens for maybe 30 seconds at a time but it's sort of like falling asleep with your eyes open and very scary --and very dangerous. At first i had all the numbness and tingling and weight loss as well but TRUST ME, that is NOT what you will care about. The worst side effects are d/t to memory loss, lack of concentration and dizziness.

Try a very low dose of this drug at first and continue with that for a while-maybe even months to see if it helps. I think anything over 50 mg seems to produce side effects that are too dangerous and not worth it!

My psychiatrist started me on Topamax 2 yrs ago for depression from being 75 lbs overweight. Started at 25 mg/day up to 50/day for 2 yrs. Lost 70 lbs and kept off with only minor side effects. Also took 150/day Wellbutrin during this time. (For being kind of a neat freak and washing my hands a lot.- didn't affect my social or work life much) Have slowly started gaining the weight back (+12 lbs). Seem to have built up an immune to the 50/day dosage over the 2 yrs. So he added 25 in the am in addition to the 50 I've been taking in the evening. (1 mo. ago) Having some strange reactions. My memory seems to be taking a real hit. I am a CPA (passed these exams 15 yrs ago) and now I'm studying for the Cert.'d Internal Auditor exams. I am having a great deal of trouble trying to memorize for these 12 hour long tests! I feel fatigued every day. My blurred vision (that requires reading glasses) has gone crazy. I can't read the song book at church at all. And I'm only 47!. I've had acne like bumps all around my nose and face. How could such a slight increase cause so much change? Also sometimes my heart feels like it is going to beat out of my chest. And I'm losing patience w/my 13 yr old son who's pushing my buttons to see how much he can get away with. He seems to sense that I'm not at my best. But if I go off this Topamax and gain back my 70 plds I know I will plunge into a DEEP depression. Has any one talked to their doctor about the possibility of these side effects going away after time? My tingling hands and feet did and my slight hair loss did. And my weight loss is trying to go away but I don't want that. I'm majorly concerned about the memory loss and blurred vision eventually going away. DALIAL

I took Topamax for my migraines following a significant car accident. All I can say is this medication didn't help me at all. In fact, it made my migraines 10x WORSE! Before, when I had a migraine, they were debilitating and would last up to 48 hours. Once I was on Topamax I had a migraine that would not go away. It was almost a month of me being out of work so that I could be weened off this medication and feel better. Now I take something called Axert which you take at the first sign of a migraine. It is my miracle drug. It is not a narcotic like every other doctor seemed to want to give me and would make my migraine go away within an hour. However, I have noticed I have built up a little bit of a resistance to it!

I posted above, but forgot to add....I feel like I just got off a plane, and it was a 16 hour flight. My ears. I hope no one has lost their hearing on this med because if this is the case then I seriously need to go off of it. I do feel a bit confused, too. I take it for migraines but I kind of make a fool of myself at PMS time, getting all irritable and stuff, and I do feel like it is helping me control my mood better at this time. It sure helps the migraines. I have pins and needles in my hands, too. Depression, too, it was worse at first, better now.

Hi I've been on topamax for 4 years . Had all the side effects...weight loss,tingling in hands and feet,no memory and speech problems! I was taking 600mgs a day! I take it for epilepsy! I was on the highest dose. my doc then weened me from top. to zonegran 600mgs. It's very similar to topamax. For me it is not helping me as much as the topamax. I think it's a great drug!!!! I did not loose hair, no constipation, no rapid heartbeat for me! I am going back on it . Yes sometimes I would get in a hostel mood and can't spell shit , but for me it's all GOOD !

Hello All,
I"m a 50 year old Mother and Grandma who takes Topamax as a Mood Stabilizer for Bipolar Disorder. I took it about 5 years ago and about 6 months after I started taking it I was struck down with debilitating diarrhea, nausea, loss of appetite, extreme weight loss ( 26 pounds in one month ). No one knew what was wrong with me. My psychiatrist actually upped my Topamax dose because I was becoming depressed and having severe mood swings. I was sick for 8 months. I saw a new psychiatrist and he stopped the Topamax because it just was too over medicating at that time and started a different mood stabilizer.

I didn't put 2 and 2 together. I just was happy that the diarrhea and nausea for the most part was gone. I still have nausea frequently but that is from a totally different cause.

In December we discussed that the new mood stabilizer was no longer working so we went back on the Topamax. In April the diarrhea and nausea this time accompanied by vomiting started. I was ready when it started tho even tho I didn't know the cause. I got hooked up with a GI doctor, started probiotics immediately, started eating organic yogurt with as many live active cultures in it as i could find. I would only eat plain boiled rice, boiled macaroni, toast, ripened organic bananas and drink lots of fluid. No gatorade but pedialyte because gatorade has citric acid in it which can be irritating. Pedialyte doesn't. I also drank decaf ice tea with small amounts of sugar.

Now today I read that Topamax can give you diarrhea and if you have a history of diarrhea tell your doctor. Great, just great. Trade my mental health for my physical health but having diarrhea at the most unopertune times does affect my mental health. What am I going to do?

I refuse to take a weight positive mood stabilizer and that is all I'm left with. Like Lithium, Depakote. they will make me as big as a cow. I'd rather have diarrhea to tell you the truth. I don't think I'm gonna tell him.

Missyk10atx

I was wondering if topomax causes high blood pressure? Also I'm on 350 mg a day plus 1600 mg of tegretol a day . I was wondering if any one was on such a high dose?

I had a few of ,what I now know, to be side effects of TOPAMAX. I asked the doctor for help in getting rid of them & he changed me from CARBAMEZAPINE (for my EPILEPSY) to LAMOTRIGINE. This was like pouring petrol onto a fire to try put it out (!!!) as one weakens TOPAMAX & the other STRENGTHENS it. I went from a few mild problems to being tired out, forgetting the name of a town I lived for 2 years, shaky hand, eczema, spots, sinusitis, throat infection, vivid dreams & before fits seeing bed buds crawling all over the bed & big lumps growing inside me. After fits ,whilst still in a daze, walking round falling everywhere!!

I am a 39 year old man with peripheral neuropathy and migraines. When I was diagnosed 3 years ago, the pain in my right leg was horrible and headaches daily. My Dr. put me on Topamax and I was so happy, it seemed to help but one night( about three weeks into it) I went to bed and awoke in the morning legally blind. Topamax was stopped that day but it took 4 months ( and changing the prescription in my glasses 3 times) for my vision to return to 20/20. The doctors tell me I was lucky as some people have perminate lens damage from the optical pressure change.
My doctor said I could not take any thing in that class of medications as it would probably have the same effect on me. So he decided to put me on Cymbalta for the neuropathy. He said it was being tested as a possible use for neuropathy but had not been proven. It works great for the pain and oddly my migraines have gone down to about two a month.

I've been on Topamax for a few months now........this is the second time. The first time was in 2002-2004. I was up to 400mg for migraines & depression. It was supposed to do double duty. Well, I was stupid, to put it briefly. I couldn't remember anything. I would stop mid sentence because I couldn't think of the word I wanted to use. I lost a lot of weight, too much. I had needed to lose a little....baby weight. But I looked anorexic. So out to buy a new wardrobe. $$$ I lost a ton of hair!!!! So off it I went. The weight came back very fast....too fast I think. My friend says the same thing of her experience. THIS time I'm on 250mg.....no more than that, as per me. I was stupid for a little while, but it seems to have gone away for the most part. My hair is still falling out, so not much longer on this one for me. The reason I went back on it was for the weight loss ( and it does help the migraines). I was on some migraine meds that made me gain 40lbs over a 2 yr period(Abilify,Cymbalta). NOTHING could get off the weight. Not exercise, not diet. I've lost 21 so far, but my progress has slowed because of Wellbutrin...it makes me crave sweets. And my willpower is nil. lol So off the Wellbutrin I go. I also learned my nastiness could be from Topamax. I snap at the kids. Who knows which drug it's from! I also take Singulair. That's a story in itself. That one's gonna go too.

I was given topamax and I dont have seizures or anything. I have PTSD, Depression, and Panic Disorder. I was all over the map, having violent episode, and no memory of it (which was dissociation). They put me on this while i was in the hospital, and I became so non-functional it wasn't funny. I have a degree, grad school, and am 1/2 way through a masters, so I am normally well spoken rationale and well thought out. I was having trouble finding simple words. The effects came on immediately. My memory and cognitive abilities have been permanently affected. I was on for a year live in a outside a small city, and have no real option for other doctors. Not to mention..I found out that this drug has a high rate of users getting depression and in particular at risk for suicide. That was what happened with me...prior to taking it..Then they put me on it?

Trouble seeing, cognitive abilities, memory, depression (was already depressed, and suicidal, but I think it was counterproductive to the anti-depressants)

Is their any action against this drug?

I thought I had sinuses for years..got test for allergies and was founded to be allergic to nothing! Despite having at least 3 infections a year and on my 3rd nose spray, zyrtec, nyquil at night..ect..because I was contantly congested and had drainage & headaches..3-4 infections a year.. She ordered a cat scan and was told that my sinuses had spurs but was clear; my septum was severely deviated and I needed a ENT to have surgery to correct it...The ENT wanted to do major surgery which included a plastic surgeon... so I went for a second opinion to another ENT that was well known who told me I had rebound headaches..and referred me to a neurologist..my goal was to get off all the meds (nose sprays, nettie pot, antihistamines..nyquil..ect..) ..he was a dinosaur and was convinced that although I had a severe deviated septum~he didnt want to do surgery but wanted me to stop all meds I was on and to go to his neurologist that he liked *(another dinosaur) who put me on Topamax..50mg in the morning and 50 mg at night..I had panic attacks right away so he added 20 mg of klonopin at night to help with that and flexeril to help me relax...he hinted at me going to a pysch doctor which pissed me off right as if I was psychosomatic or something... and stiffled me a few times when I tried to talk to him about my drainage and congestion~he wanted to hear none of that because he already made his mind up what I had and "sinuses" didn't jive with his impression that I had migraines.

All of the sudden within days I really did have migraines..they just hit me! HARD...I had to call him and tell him I was in excruciating pain on the right side...he called in Imitrex inj. and they worked within 5 min. and my Topamax went from 100 mg total > 250 mg/day! I had at least 6 shots since and the side effects of the Topamax have profoundly changed my personality...I have no word recall..like being stoned in the 70's but worse because I have a special needs child and I need to engage her and am like a zombie! I have ALL the same sx that are mentioned but notice one that isnt noted which is my tongue is raw as well as my throat...all the way down into my stomach...I am having to take zantac for acid indigestion~it is like my insides are raw!
I am also having extreme constipation...I lost weight in the first 2 mos. where I couldn't eat nothing..but now I am eating cause it's there but it is not leaving me even when I take multiply doses of my old standby... I am drinking tons of water..at least 64 oz a day but it is not helping. My eyes are burning at times...I need my reading glasses all the time now. Some days my heart is beating out of my chest for no reason..at rest..I just feel ill like something is not right at all! I don't go nowhere & have become a hermit. My headaches are gone but I feel I am just a shell of a person and want to get off...I am slowly weaning off by doing it 25mg at a time for one week at a time....then another 25mg another week......I know I will have migraines but I will just bite the bullet and suffer through it till I am off this poison....I have some injections left..MY main goal was to be off meds and these side effects are horrible! Once I am completely off I am going to a good ENT that can do the surgery to fix my sinuses so that I can hopefully be drug free as I intended. I too wasn't told of these side effects at all. So much time & $$$$ wasted! I think if I stay on this too much longer it will truly do long term harm!

ok i have been taking topomax for about roughly 7 years. at one time it got so bad with the memory loss they put me on the alzhimers med. that they proscribe for about everyone with alzhimers. i have had clumps of hair fall out so they put in a prescription for hair loss. i once weighed 100 lbs size 0 im 5 ft tall and i am usually about a 7-8 . the topomax i was taking it for my toruretts syndrome and every so often it causes a clich ill have face freezing that will last for and hour to 3 days or make it worse. ill get hives i get aggressive angerd very easily at the drop of a pin and wont eat at all because i forget i forget everything i once stared at a wall for 3 hours i couldn't move my body or eyes my mind went blank like someone shut off the electricity . plus bad acne ( um when i first took it it was like i was getting high with my entire body tingling like when ur foot has fallen asleep even my eyes felt like that) i have sufford some vision problems everyday and forget what and where i was going it has made me have some psychological problems increase
i have now recently stopped taking it i still get rashes i am always cold hair is still falling out still hear a ring in my ears i see things that aren't there like little firecrackers going off in my vision or blackouts like when u get a migraine i am always itching tingly all the time aggravated all the time
but now i eat i have gained like close to 20 lbs but i am more focussed in some things it helps when i am in class to stay focussed but not really because im not used to being so alert but i think i like not feeling foggy anymore

I started Topamax in November of 2007 the usual 25mg and worked my way up to 150mg. I have always had pretty thick hair and now have hair loss in the widows peak and top part of my hair. Needless to say I am devastated. I have cut myself down to 50mg in the am and 50 mg in the pm. My Neurologist states that she has not heard of hair loss but even this web site and the drug company states that it can cause hair loss. I have with the help of a very good massage therapist determined that my migraines are cervical so I am seeking a second opinion and taking myself off this drug. Not worth the hair loss if I don't need to be on this drug.

I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!

My doctor put me on topamax for daily chronic headaches. I worked my way up to 200mg and had all the symptoms, tingling in my hands and toes, short term memory loss, hard time putting sentences together, etc. I backed myself down to 100mg. and the side effects lessoned up significantly. I stayed on 100mg for almost a year (lost 10 lbs.) One day I decided that I was going to ween myself off and started going down 25mg every week until I stopped altogether. Since I have stopped, I do get headaches, usually 1 or 2 per week, nothing like when I started out on the topamax. I have gained 20lbs since stopping the topamax but no longer have a memory problem or putting together a complete sentence. In my opinion, you should try to take the lowest dose possible that gives you the greatest relieve from your pain.

Ive suffered from migraines for about 5 years and never done anything about it until i seen a neurologist and found out i had a brain cyst. (not deadly) She prescribed me to topamax for migraines and immediately i started feeling change, i was moody and had no appetite, memory loss, chest/heart pain, short breath, paranoia, angry all the time, would cry at the drop of a hat, couldent concentrate, dizziness and it felt like a cloud was over my brain, i felt nothing all the time.

Ive never been suicidal and one day i lost it, i felt like everything out of me had been drained and it would just be such a relief to die right then. It was the worst 3 hours of my life, trying not to kill myself because i knew it was the topamax doing this. Definitely scared off it now, do not want that to happen again

I was on 50 MG of Topamax and 1/2 Phentermine tablet for 3 months as part of a physician's weight loss program. In that time I lost 38.1 lbs (had little appetite, but had lots of energy and exercised by walking over 1 hr every day or every other day....depending). One week after my 3-mo weigh in, I started experiencing heart problems during one of my walks. I felt dizzy, I was sweating more than usual, I was lethargic and I just didn't feel "normal." The next morning I felt good so I went for my walk. The problems from yesterday intensified during my walk and I had to quit after 1 hr. I was very dizzy, sweating a great deal, I was very lethargic and I was nauseous. It also felt as though my heart was jumping out of my chest (palpitations). I went home and couldn't get out of the chair; that's how tired and bad I felt. That afternoon, I drove myself to the doctor. My blood tests and urine screen were "normal," but my EKG (on-site and immediate) was abnormal. I have always had "irregular EKG's" due to what I call "an extra beat." But this time my heartbeat was "enhanced" and not "normal" for me (doctor's words). The chart showed that I was having many palpitations (strong, irregular ones). I was told not to walk and not to leave town over the holiday weekend (the doctor still didn't believe the medicine was to blame since I had been on both over 3 months). I stayed inside much of the weekend, but finally went to a store to return an item. After 10 min in the store, I felt HORRIBLE (worst ever). I was so dizzy, very nauseous, I was sweating (in a very cold store), my heart was jumping and it was difficult to take more than a few steps. I went home and spent the remainder of the weekend in the house. On my own (2 days later), I cut the Topamax in half and took the usual 1/2 pill of Phentermine. I started feeling better that same day. The next day I did the same w/ my mediation and felt MUCH better (although not 100%). On day 3, my doc phoned me at home. When I told him I had cut down on my Topamax and felt much better, he told me to immediately stop taking BOTH drugs. I did and I improved daily. On day four I was 100% better. After a week and 1/2 of overeating (and being depressed about it), I began taking 1/2 tablet of Phentermine (but no Topamax) w/o my doctor's knowledge. That was 3 days ago. I am feeling well with an occasional palpitation (minor though). I am back to having little appetite. I see my doctor in 2 days. He may be unhappy that I put myself back on the Phentermine, but at least now I KNOW that TOPAMAX was what caused the majority of my heart problems. I am not sure what my doctor will do (probably demand I stop taking the Phentermine); I am hoping he will place me on a safer drug that will help me reach my goal of a total weight loss of 100.5 lbs. I have been overweight for 18 years (since my marriage) and I am FINALLY determined and motivated to lose weight by eating less, eating right and exercising. PLEASE be aware of taking Topamax!

I have been taking Topamax for about 6 months now. I have been on several different everyday medications for migraine prevention and Topamax has been the best one. I was first prescribed Relpax to help relieve the headaches. I eventually got to a point where I was getting migraines every day/every other day (insurance only covers 12 pills per 20 days). I was later switched to Imitrex - which is MUCH more effective (1 100mg tablet) but my insurance only covers 9 pills per 30 days (unbelievable).

Just wanted to give you guys some background on my situation. I have been through 2 MRIs and a CAT scan, visited a neurologist, done 2 sleep studies, spent 2 months on a breathing machine for possible sleep apnea causing migraines. My family doctor, my neurologist, everyone I saw was unable to determine the cause of my migraines.

THE GOOD NEWS is I was referred to an UPPER CERVICAL SPECIALIST by my old chiropractor. This may not sound believable but my headaches have decreased to about 2-3 per month since I've been treated by my new chiropractor. My old chiropractor was the type who did a complete adjustment on my spine/hips and cracked my neck both ways every time I visited. The upper cervical specialist focuses on C1-C2 vertebrae and uses calculated heat readings to determine where there is inflammation and there is no twisting/turning involved. Look up upper cervical chiropractic on google and see if these treatments will help with any of your headaches. It has helped my situation dramatically and I will continue seeing this specialist and probably come off of the topamax in the next few weeks.

I was diagnosed with glacoma, and found out it was caused by Topamax. Now I am faced with maybe losing my sight.

I've been taking Topamax now for about 6 weeks, and my headaches are still just as bad as ever, except now I have headaches with the thrill of numb fingers, confusion, weight loss, memory loss, an absolute horrid taste in my mouth, and now the latest.... my hands feel dirty all the time. Has anyone experienced this?? I just feel like my hands are dirty. I wash them, and a half hour later, it almost feels like there's a film on them, and I have to wash them again. Almost ocd-ish. So 6 weeks in.... Anyone have any advise on how much longer I should give this topamax before I give up on it & try something else? My doc said it should have worked by now if it was gonna - but I have read on here, that it sometimes can take months...? I just don't know if I can take these side effects, AND the headaches for much longer without going NUTS! {grin}
Any advise?

I have been taking Topamax, 25 mg. for one week. Today was the first day I took 2. My doctor prescribed it for migraines, which I was having several times a month. The past few times I thought I was having a heart attack! I read about the side effects before I began the medicine so I have been waiting on everything to begin. So far the only thing I have noticed is I have a weird sensation in my mouth and sometimes in my throat. The only way I can describe it is if I have been breathing something caustic, such as smog or smoke, or a lot of dust. One thing I am going to try is a mouthwash called Biotene or Biotene. It is for dry mouth. Maybe it will help. Has anyone else experienced this and/or tried Biotene?
I read with interest what everyone has written. I drink soda all day and will be integrating more water because of one of the posts. So far though, my cokes taste the same. Is it only Dr. Pepper that tastes differently? I have also been getting winded easily and thought it was just me. The one side effect I am READY for is the weight loss. I gained 20 pounds in a year after I quit smoking. Anything to help with that is welcome.
So far though I have not had any migraines and I always have one with PMS. No increased anxiety but I have been on Zoloft for several years for depression. Maybe the Zoloft will offset the Topamax in that respect. I can be somewhat scatterbrained at times and as an assistant principal, I have to stay focused all day. Now that it is summer I will be able to relax a bit and it's ok if I am more absent minded than usual. Except that I have to work on a research project. But hey, does anyone really read that stuff??
Thanks everyone for sharing and I will check back in if anything changes. I am curious to see how things will go.

I was given a free sample of Topamax to help with neuropathy, but while I still feel the neuropathy pain, I have so many side effects. It's been several weeks, and family members are concerned with the changes in my behavior and ability to function. My wife is afraid to let me drive, and worries about my performance at work - the stress is hard on me.

I've had severe moments of panic, agitation, rage and thoughts of suicide.

Since I can't tell that it's really treating the pain, I want off of this medication.

I only started Topamax three days ago (25 mgs, but it will be increased to 100 mgs over an eight week period to help me adjust), and I've already experienced the loss of appetite, crazy mood swings, insomnia, eye aches, and head aches. I haven't had a migraine, though, so that's nice, I guess.

I am approaching 8 mos on Topamax. I take it for Epilepsy vice Migraines so my situation is less discretionary. Caffine is a definate no-no on Topamax, it makes you feel confused and crappy immediately after you drink / ingest it. That is the first lesson I learned. Drink plenty of water, that helps your kidneys work through the medicine. I take 75 mg in the morning around 7:30 and my heavy med time is around 11:30 (lunchtime) and then 50 mg at night so I am asleep during my evening heavy med time. Topamax is a miracle and has kept me seizure free for 8 mos. Side effects are light, I just plan accordingly. I would never take Topamax if I did not have to. I just take plenty of notes to overcome my high med times / confusion and seem to be doing pretty well. The big one is CUT OUT CAFFINE. Man, caffine will make you feel really bad.

I began reading all of the blogs about Topamax and was surprised. I have been taking Topamax as a mood stabilizer since February 2007 at 200 mg at bed time (I probably sleep off the fatigue). The only side effect I am concerned about is the weight loss. Short term memory is not an issue. As a matter of fact, I am attend college and am managing a 3.85 gpa. I wish all of you the best of luck and hope you find something that works for you.

This is tough. I was on Topamax for about two years. But then I wanted to detox my body from all meds. Topamax helped with my chronic headaches. I had headaches 23-24 days out of the month. Topamax helped me quite a bit. But the side effects were horrible. Once my body got used to it, it was not too bad, not great but somewhat bearable. But after getting off of it again after a year, I got the worse headache ever, I blacked out. It felt as if someone was shoving an icepick through my eye. This started to happen more than once. My doc suggested I go back on because it helped me before. So here I go again. I lost 12 pounds in seven days. I forget what I am going to say. I have poor concentration. I am hyper-aware. And I cry quite a bit. This is NOT ME. But I try to keep walking along and doing my best, because neither the medication nor the headaches are going to get the best of me!!!!!

I have been taking Topamax for 3 years. I started out at 25 mg, ramped up slowly to 75 mg and have been on 100 mg for 1 year. Over the past 2-3 months, though, I've been feeling very weird, almost like I'm not here sometimes. It's hard to explain. Sometimes I'll get all the way to work and I can't even remember getting ready for work. My short term memory is shot, and that's bad for me. I used to remember everything. I just don't feel like me anymore. I did lose about 30 pounds when I started taking it, but I've gained that all back. I also had tingling and the carbonation in sodas went away for about 6 months. It did take away my headaches for the most part. Axert alleviates any that I do get now.

I started taking topamax in 2005, for bad headaches due to my antidepressant zoloft it is now 2008. I am 5'7 and weighed around 140, I now fluctuate from 115-125, no more no less. From taking the pill I suffered a great deal of weight loss and disorders. I now am unable to gain weight even when i eat cause my body is not the same. I mean its great if i needed to loose weight but at 5'7 weighing 120 soaking wet its not.

i have been on topamax for 6 months... i was also on tegrotol at the time. the drug made me stupid, i couldn't visualize things or think clearly, my memory had gone and i was forgetting the most familiar things in my life, i felt unreal and as if i were just a pair of eyes watching the world, i could ever just relax and feel normal, riving made me feel weird and i cant drive long distances. iv now decided to come off the drug and live drug free... i really hope that these effects go away... its the worst thing my neurologist has ever done...

I have been taking Topamax for 3 months for cluster headaches (which is pain equivalent to childbirth). Topamax has made me a maniac. At first, it has been helping, but now that my doc has me on 200 mg a day, I feel like the first thing that I think of when I wake up is death. I worry about everything! I forgot my son's birth date when filling out a dental form. I can't remember the family cat's name. I don't know the second line of our bedtime prayers, etc. I feel like crying because THIS IS NOT ME! I am normally very sharp and witty and I just can't seem to get my normal thoughts out. Today I only took 3 pills instead of 4. I am starting the weaning process myself. I have stuck with it as long as I could. It's time to find something else....a good massage perhaps.