Topamax side effects

I was placed on Topamax, off label, for suspected bipolar illness (now disproven). My cognition, word finding abilities, memory has been so adversely affected that I am now on disability. I had 5 kidney stones due to the development of Renal Tubular Acidosis, nearing renal failure (a side effect doctors don't warn patients about). This in turn led to osteomalacia, softening of the bones, only discovered after I broke all three major bones in my leg and snapped off my foot stepping off the lowest seat of a bleecher. I've suffered tingling in arms, hands, legs & feet (nerve damage), lesions in the brain, muscle spasms, heat & cold intolerance, insomnia etc... Although I lost weight, I gained it back (then some) as soon as I reduced the dosage of 800 mgs. Upon stopping the drug to save my kidneys, thus my life, my kidney function returned to almost normal within a few months, although there is residual damage. All other side affects remain two years later. Losing weight is not worth dying! Beware of this drug being used off label! I would never trust this drug!

Ive been on Topamax since for 3 months for migraines and have lost 30 pounds, I simply am not hungry. At this point its not worrisome as I did have a little extra weight to lose, but I cant keep it up forever. My doctor lowered my dose from 100 Mg, to 75 mg, which I split and take 50 mg in the morning and 25 in the evening, it has not made a difference. I had a tremor prior to Topamax, which my neurologist thought would be less with the Topamax but in fact it was increased, so I had to start another drug, Mysoline to counteract the tremor. Ive been on that for about a month and it seems to be helping some, Im at least back to baseline. I recently learned that my potassium level has decreased which is causing muscle cramps and can cause many other more life threatening problems, so please watch out for that! It is a listed, albeit less common side effect of Topamax. (0.4%). You Dr. should have checked basic metabolic panel (BMP) and should check it regularly. Oh, and IM MIGRAINE FREE!

I have recently started taking 100mg of topamax daily and the tingling in the bottom of my feet has been painful and keeping me awake at night. I have found something that has been very helpful......rubbing Tigerbalm muscle ointment really does the trick, albeit temporarily. By the time the effect of the balm wears off, typically the tingling has subsided. Hope this helps someone else

I became extremely ill after beginning Topamax. A trip to Urgent Care started me on Z pack for URI and gave me cough medicine. Cough along with incontinence and exhaustion became more severe over 3 weeks. Wheezing worsened but chest xrays done by my PCP showed no pneumonia. I have asthma and allergies which were treated by my PCP with Singulair, Advair and a rescue inhaler with no success. It wasn't until I started thinking about possibility of Topamax playing a part and doing research myself that the puzzle was solved. 3 doctors and a pharmacist knew nothing about the affect this drug has on asthmatics. I was miserable for an entire month due to this drug which could have been completely avoided if doctors were better informed. I had to convince my physicians by taking myself off Topamax in order to alleviate my symptoms. I hate to think where I would be today if I had continued taking the drug and had not found this web page!

Those of you taking Topamax, you may want to talk to your doctors about trying Zonegran. I took Topamax for "dizzy migraines" and although it worked I had the same side effects you are all mentioning. Although the Zonegran did make me sleepy, if I took it at night I was at least able to function the next day plus no tingling hands or feet which on Topamax was a nightmare. If you decide to stay on Topamax know that Vitamin C helps with the tingling hands and feet very much (my neurologist told me this) and it truly works!

Well, my Fiancee (Sandra) started taking Topamax a few months ago. Her side effects have included: loss of energy, tiredness, tingling in the feet, nausea, chest pain, appetite lose, rapid weight loss, and a severe decrease in her sexual drive. The worst of the side effects is her sudden and unpredictable mood changes. She verbally assalts me and her children all the time. She is aggressive and picks fights over anything and everything. I love her with all my heart but I can not live like this. So bottom line, Topamax has gotten rid of her migraines and/or decreased their frequency and severity. And the cost of that benefit is the destruction of the relationships with the people that love her most.

Last night I took my first dose of Topamax: 25mg for migraines. I didn't expect to feel any side effects with such a low dose but I feel very tired but restless at the same time. I feel like I should law down and sleep but I can't stop myself from shaking my legs or twinkling my toes. It's the only thing I've noticed so far. In six day I up my dose to 50mg a day. Wish me luck.

My experience was a seven day short-lived trip through hell on Topamax.

I began experiencing a constant headache for several months in February 2009 (no prior history of headaches). I am healthy 32 y/o male. After multiple MRI's and CT scans came back negative I had a very severe headache that sent me to the ER. The ER helped arrange for me to see a Neurologist, who after patient listening to my laundry list of symptoms concluded I was having migraines (even though I had no sensitivity to light, sound, or nausea). I had been doing a decent amount of research on headaches and didn’t agree that they were migraines but decided, he’s the neurologist, I should trust him. Let me also say at this point, I am not a person looking for a pill to cure my problems, but I was getting desperate as my headaches were ruining my life. I was prescribed Topamax.

I was suppose to start with three days at 25mg, then go to three days at 50mg, and finally up to 100mg per day. The first three days were uneventful when I hit 50mg and then 75mg…I was out of my mind. I read these messages and see people at 400mg with no problems…it makes me cringe to think of dosing that high. I stopped at 75mg…here were my side-effects. Tingling in my face, lips, hands, arms, and fingertips, chest pains (I do have GERD and it jacked up my GERD bad!!!), pain in the back of head, taste confusion (soda tasting flat), and pressure in my eyes and temples…But those are NOTHING compared to the complete feeling of anxiety that over took my body. I had a mild nervous breakdown at work, became paranoid to the point where I was afraid to do routine tasks. And the MUSCLE SPASMS…those are the worst part. I have muscle spasms all over my body, just random fluttering of muscles in my chest, arms, back, neck, head, and face! I became suicidal and had the worst night terrors ever, of things, that I wasn’t even afraid of.

I have been off Topamax cold turkey for four days now and the anxiety has significantly subsided. I have worked through a lot of the anxiety with my wife and I now believe that stress is the cause of my headaches, not migraines like I tried to tell the doctor…but the muscle spasms have not stopped (they have decreased) yet…but I can’t wait for the Topamax to leave my body.

I used to think these messages boards were part of the problem, but they are very helpful. Do your research before you put anything into your body…trust yourself and if you disagree with your doctor, get a second opinion. This has been a life changing event for me.

Health and Happiness to all

I am a female in my mid-to-late 30's. I was on Topamax for about a year. The memory, vocabulary, concentration, focus, loss of words and 'confusion' got so bad it became a real problem at work and the rest of my life. When I started forgetting how to get home, the neuro doctor took me off of it. Those problems decreased a bit, but never entirely disappeared. After weening off the medicine, the full-blown headaches/migraines returned (Topamax only moderately relieved pain). So now in addition to the pain in my head, I have the lingering sides-effects to deal with. It cost me my job. I've been off Topamax for over a year and still have not regained control of my own thought processes. Among other things, it's embarrassing because I feel stupid. I no longer understand about half of what I read, have trouble following (and remembering) conversations, habitually forget what I'm supposed to do/have done/am doing. Forget being able to follow a series of directions. I am afraid Topamax has caused permanent damage to my cognitive brain functions and I have no idea what to do about it. Has anyone else experienced this problem?

I have been taking Topamax for almost five years. I am currently taking 200mg in the morning and 250mg at night. The tingling in my feet and hands come and go. The weight loss has tapered off. My neuro and I very slowly worked up to this level but it has finally put a halt to my migraines. I may have one once or twice a year. He says this is the highest we could ever go so thank goodness the headaches stopped. The past year I have begun to be very forgetful, Over the past three months it has started to affect me on a daily basis. Over the last week, I haven't been feeling like myself and have started to feel emotionally numb. Meeting with my neuro today, Not sure if its the meds or not causing me to feel numb or just life's' stress.

i have been on topamax for a year now and the side effects change from time to time.but the worst is the taste of copper in my mouth at times or the headaches i just wish there was a medicine that didn't give all these side effects

I've been on Topamax (100 mg 2x per day) for 5 years as mono therapy for epilepsy. I switched over from Depakote which was a *nightmare* and it has been great, no seizures. I've had the pins and needles, diminished vocabulary and memory, and intermittent eye twitching but this week my right eye (why is it always the right eye?) has started twitching almost constantly. It is frightening and embarrassing and I am not sure what I should do.. I guess it's back to the neurological drawing for me because I am not sure why it's happening now. Has anyone else had the eye twitching occur after long term use?

This is not a medication that should be given to asthmatics. My son was started on this medicine for frequent migraines, >2 per week. He has asthma and is very small for his age 100lbs. He was taking the smallest dose of 25mg per day. He only took the pill twice and was already having shortness of breath and beginnings of sinus infection and upper respiratory issues. I really don't think this medicine should be prescribed to anyone with asthma.

I was prescribed topiramate (it finally went generic- I've been trying to get this med pre-authorized by Medicare for years) a couple of weeks ago for off-label use related to bulimia, more specifically, for weight loss. I also take lamotrigine, an anti-convulsant, for bipolar disorder.

I began at 50mg/day for 2 weeks then titrated to 100 a few days ago. The side effects I've noticed so far are opposite to most of the ones noted here. I am not lethargic or sleepy at all. It's 3:10AM and I am wide awake, as I was last night. I had an excess of energy today and plenty of words to express my ample thoughts. However, my brain working in a sort of backwards fashion, these are the exact sorts of symptoms that signal mania and are extremely dangerous to somebody who has my condition, so I am on strict notice with the doctors and will most likely be either taken off the topa if this continues for another day or two, or put on an anti-psychotic as a preventative, which of course would be counter-intuitive to the weight loss idea as atypical cause gain. You can see from my writing style of run-on sentences that my thoughts are a bit jumbled.

Also- numbness in the heels, irritability, neck pain, itching.

I shall try to post back if I don't wind up in locked ward :-P

I was taking Topamax for about 4 years for chronic/daily migraines. It helped tremendously after I had taken almost everything else with no success. Then I had an episode where I ended up with 5 kidney stones. They passed but my neurologist wanted me off the Topamax in case that was the cause of them. I went off and my headaches came back with a vengeance. I had them daily until I begged my primary care doctor to put me back on Topamax. I honestly would rather have stones than daily headaches. I am a mother to four and have a husband and a job. I can't live with daily migraines. After being back on it for about two weeks the headaches have disappeared. I take 200 mg twice a day. I do have memory loss and loss of words big time. It is VERY frustrating. I feel stupid. But I can live with that. I have tingling cheeks , lips and hands. I'm sensitive to sun and have to wear my sunglasses a lot more now. I now talk in my sleep- a little nervous about that :) I lost weight last time around but haven't yet this time. I am very happy, not sure if that is the RX or just me reacting to not having headaches. I guess you have to weight the side effects with the benefits. The choice is ultimately up to you. Good luck everyone!

I am 16 years old and i have been taking topamax for about 5 months now. I am taking 200 mg a day as a mood stabilizer. I have experienced nothing but horrible things on this medication such as, memory loss, inability to considerate in school or anywhere for that matter, loss of word for example stropping in mid sentence a lot trying to figure out what in the heck i am talking about, also i lost weight on this when first taking it i was 130 lbs now i am 110 lbs, and not only does it not make me hungry but when i eat after i experience nausea. This medication is horrible.

I just found this post by accident. I also am on Topamax 200mg daily. I have tingling in my feet especially in my heels. I find myself being very forgetful. I will be doing something and completely forget what I was doing. I am also having speech problems. This is very frustrating to me. I don't know that I could ever go off the medication. When I first went on the medication I lost a total of 80lbs. This was very scary. It seems now that I can eat whatever I want and not gain a pound. This is weird. I heard that the FDA is trying to approve the RX for weight loss. Just wanted to post my problems too.

I am a 38 year old male suffering from a combination of occipital neuralgia and migraines. For 20 years, until a year ago, i would endure pain that was only manageable with narcotic pain relievers (imagine all the gamut of such kind). I would have neck and head aches typically 3-4 times a week, accompanied by vomiting, dizziness which would put me to bed for the entire day. Work and family suffered in magnitude comparable to my own suffering. So then I finally saw my GP for that. The pain meds went up the roof, imitrex, maxalt was added to the equation with only marginal side effect. I saw a neurologist. He had me do an MRI and put me on Topamax starting from 25 mg, which I upped to 200 mg within 6 weeks. Past the initial side effects, the headaches subsided, the frequency reduced and i was able to enjoy weeks at a time with no episodes. Stayed at 200 mg for 5 months. In the meantime, the MRI came back positive for some brain inflammation. False positive they said, does not fit the clinical picture. Second MRI, same positive, this time proceeded with LP, which was negative. Third, MRI still positive; making the neurologist uncomfortable. While dealing with MRI results, the topomax had yielded positive results as far as pain management was concerned. But little by little I noticed that I was becoming more irritable, more impatient and more forgetful. Someone would have to remind me of something several times before it would even register in my mind. I empathize will all the posts that mention feeling like having Alzheimer's. I didn't care in the meantime. As long as I didn't have to deal with the pain it was ok with me. But the situation became worst and worst. I couldn't concentrate on anything, the mere task of remembering to do something was insurmountable. I would wake in the middle of the night and find myself staring at the bathroom mirror for no reason. I would have terrible panic attacks which i control with valium. But yet i continued on with topamax convincing myself and being convinced by other people around me that i just had a "personality disorder". Finally, work begun to suffer. I was loosing track of meetings, deadlines and when this happens someone knocks on your door (boss) telling you that something just doesn't click, something just doesn't feel like a personality quirk. Other people playing doctor would slap on my face that i just had ADD, that I should take something for that and get on with my life. But something was wrong. Pain or dizziness or lack of concentration etc are all electrochemical processes in your brain. It turns out that topamax was helping my headaches but it was not slowly deteriorating other cognitive abilities. Finally, the neurologist decided I should wean of the topamax, stepping down from 200 - 150 and then we go to 100 and so on. I dread the re-occurrence of the headaches. I am waiting for them to happen again at some point as I drop the dosage. But in the end of the day, I'd rather be in pain and in control of my life rather pain free and absent minded.

Hello to All
I'm 33 yr old female who began taking Topamax 2 years ago, after diagnose with Pseudotumor Cerebri,(elevated intracranial pressure),doctors still don't know why i have PTC, it is common overweight women, certain medications, secondary to disease, which all did not connect with me as I was not overweight, have never taken any medication, other than OTC allergy or pain relievers, and all secondary diseases I was tested, and nothing, with a history of migraines headaches, that suddenly became unstable, with vision disturbance I was put on diamax, it lowers elevated intracranial pressure, finally help for this horrible headaches, , I had a side effect it elevated my glucose levels to dangerous levels, due to elevated intracranial pressure I was hospitalize, undergoing several lumbar punctures and eye surgery for decompression of my optic nerve, doctors still unsure of my diagnosis, but telling me I must have surgery for a spinal fluid shunt, I was terrified, I decided to try and consulted with another neuro ophthalmology who had a totally different opinion, I switch doctors and this is when I was prescribe TOPAMAX 25MG to start, now I'm taking 250mg daily, at first the fact that I was going to be OK, that I can continue my life without shunt, no more lumbar punctures, the fact I was not loosing my eye sight, I can go running, rock climbing, after been told I couldn't, I was convinced TOPAMAX was a miracle. The 1st side effects constipation; decreased sweating, drowsiness, dry mouth, loss of appetite I lost about 20 pounds, family friends were really concern, after a while I gain it back, numbness, tingling, I was ok with it, because I no longer had debilitating headaches, had perfect vision, surgery was out the question. and I was stable, but then I suddenly experience seizure, 3 different occasion, no explanation, severe joint leg pain, trouble with speech, bruising, light sensitivity, severe acne, irregular menstrual cycle, vaginal issues, anxiety, heart palpitations, and the worst one yet, the reason I began to search on line mood swings, I'm in the medical field and the people that I work with tells me I'm just getting older, depression, 1st sings of menopause, I'm very active healthy women, with normal daily stress 2 children and 16 years marriage, I have seen my family doctor, had blood work done, and all normal. I have told my neuro about my experiences, and he says is not topamax, my ob says take birth controls it might help, im just lost any one suggestions?

terrible itching and heartburn.

I have had migraines for years and as I got older the migraines got worse. I was having four a month when my doctor started me on Topamax. I was to take 25 mg at night for a week and then increase each week until I was up to 100mg. I never made it 100mg. At 50mg I woke up with double vision. My doctor said the Topamax was so great for migraines that I stayed at 25 mg for over a year. Thats when the side effects started. I had lost of concentration and inability to find the right words. I thought I was just getting old...even thought I was in early stages of Alzheimer. I had mild depression but thought it was from things I was going through in life. Then I notice that my morning urine would smell. I cant even describe the smell just different and I knew something was wrong. I haven't had a menstrual period in over five years but started spotting. Thats when I looked up the side effects. I stopped taking the Topamax immediately. The smell in my urine went away after a few days off of it. I am hoping that my memory and concentration improve gradually. Its not worth the problems it causes. Now I'm looking for another way to lessen the migraines.

I have been on Topamax for 2 1/2 months. My dosages have been varied due to side effects that scared the daylights out of me. Never more than 100 mg a day, at which point I was a vegetable. After such terrible side effects - pressure in the eye, blurriness, loss of speech, coordination, complete exhaustion, inability to work, stopping mid sentence with inability to complete sentence - I finally had it. I talked to the doctors all along that I was terrified what was happening to my mind and body but they just said it was too soon to tell if the meds were working or not.
Out of pure frustration and concern for my own well being, I decided to try to taper off Topamax and then stop completely. I lost feeling in feet and hands, pins and needles, weakness in feet and hands as well as spasms- lovely. Frightened me so much I wound up in emergency thinking something else must really be wrong with me. MRI said all was fine as regards to MS or stroke, etc. Whew!
Continuing to withdrawal and mad as @#*! that the Dr.s don't know what they are prescribing to poor patients, Topamax is a dangerous crap shoot. Funny to me how something as horrible as this drug can be prescribed in our government, yet medical cannabis prescribed properly with little to no side effects is a crime in most states.
What have I learned from this experience?...be your own advocate. Don't let anyone ever push you into saying something is black when you clearly see it is white. Get angry, state your feelings if you feel you are being harmed and brushed off and not helped. You still have the brain cells in you to make good decisions though Topamax and pressure from others about "not taking your meds" may knock you confidence for a loop.
I'm thankful I live in CA where I can make legal choices that are not available to others in the USA. Shame on the drug companies, shame on the Dr.s that need to do their homework, shame on our FDA for letting this horrible drug on the market whilst holding back natural herbal relief that grows right out of the ground for all to use legally. Shame on me for not doing my homework earlier and doubting myself and letting other decide for me for so long now.
Good luck, hope you all find some comfort and fire in this message. We are our own best advocates. No one knows us better than ourselves. Freedom of choice is a wonderful thing - so thank you makers of Topamax, for helping me to find the strength inside to tell you....JUST SAY NO! to drugs - your drug in particular. May you be recalled and not harm any others, and may your profits plummet as you have make you $ on the suffering of so many others.

Hey everyone
I am a migraine patient myself
I'm 21 years young and been having migraines since my 12 years.

i've started taking topamax 3 weeks ago..
first two weeks 25 / morning
25 / evening

so ok my headaches got worse

now i'm taking 50mg / morning
50mg / evening

so that's 100 mg a day

side effects: funny feeling in my sool on my feet
slow reaction, real bad headaches,
i have an implanon and haven't had my period for 2 months now i've suddenly had my period for 2 days..ok it wasn't much but it was there, never have acne now i have 3 zips on my face, always black spots in my view, coughing for 3 weeks, lose weight more easley (i'm always on a diet) , this weekend someone asked me if i lost an huge amount of weight (which isn't maybe 2 or 3 kg ) my appetite is also less, i can eat if i want to though.. i can choose it's up to me :-) hmm let's see what else is there.. i'm a telephone operator so the word loss isn't a good thing for me either i'm gonna see how far that goes..

so i've been on topamax 50 a day for 20 weeks
i'm taking 100 mg a day for over a week now
within a week i'm seeing my doctor again
if my migraines aren't better on this dose my doctor is going to sent me to a specialist..
whatever doctor that's going to be ? :-s

My doctor put me on Topamax for ADD.... I am a 37 year old woman and I'm taking 100mg's of it. 50mg at night and 50 in the AM and have very quickly found that I have had memory LOSS very quickly. I have been on the med for 1 1/2 months. My vision is also getting worse and this medication is not helping me with the ADD. I am a Lab Rat to them... I am going OFF this medication. If anyone out there reads this... please do all the research you can. The side effects are not worth it! Today is Mother's Day and after 37 years.... I called her and could not remember her little sweet nic-name she has been calling me since I was born. My heart sank. IMHO.... This medication is very bad.

Hi...I've been on Topamax since October of last year. I take 50mg. in the morning and again at night. I haven't noticed any real significant decrease in the migraine frequency, just in the duration. Whereas sometimes I'd be in bed for an entire day, sometimes 2, now they only last until the early afternoon. A big plus. However, there are some side effects that I just can't live with. The dry mouth is a pain in the butt but that I can deal with. What I can't deal with is the almost complete loss of my short term memory. It's so bad that I will ask a person the same question numerous times in a 5 minute time period and have absolutely NO recollection of having asked the question previously. I have found myself walking down the street and not known where I am. I dial the telephone and not remember who is going to pick up on the other end. And I'm dazed and confused on a good day. On a bad day it's worse. I can't live like this. So...I was wondering if others had the same awful symptom that I'm experiencing. I have others that bother me but that one is the worst. Also, how do I wean myself off of this medication? Thanks for listening.....D.

I am on 25 mg of Topamax and on day 5 of it. Very slightly dopey, but this does not disturb me. The stranger symptom is that I do get hungry and then eat and then experience a significant nausea. I had anticipated a loss of appetite or general malaise, but this seems to hit only after I eat. In turn, I have to really moderate what I eat, not because of a lack of interest but what will hit on the other side. So it would seem the opposite of what others are experiencing...anyone else have this symptom?

I forgot to add a very important side effect in my last posting.

When I first started Topamax I discovered that it can affect your body's ability to regulate heat. It only happens in extreme heat. I was on a relatively low dose at the time (100 mg) and I traveled to Costa Rica where it was very hot every day. I became very hot and could not cool off which I had never had trouble with before. It was a strange experience and I would find myself becoming overheated very quickly without knowing it was happening. When I returned home I talked to the doctor and he told me to be really careful because Topamax can block your body from sweating which in turn can cause you to overheat and then essentially be at risk for heat stroke. Again it only happens in extreme heat and I was fine when I was near water and could swim, etc. but when I was hiking, sitting on hot buses and my body kept heating up it was really scary. At one point, I got so hot and my face turned so red that I poured bottle of water over my head to cool down. Just be aware of the possibility so that you can prepare for it...

I'm 38 years old and I started Topamax in July of 2008 for severe migraines. I've had an average of 12-15 migraines per month since my early 20's and nothing was working. While initially adjusting to Topamax I had the tingling in my hands and feet during the first month but then it went away. My neurologist increased the dose very slowly from 50mg to 100mg to 150 mg. The migraines have decreased in response to each dose increase. At 100 mg the migraines reduced to 10 per month and at 150mg they reduced to 6 per month. My dose is now being raised to 200 mg which the Dr. says is the maximum recommended for treating migraines. The worst side effects I've experienced are extremely dry mouth (from 150 mg+) and slight hair loss. My starting weight was 138 and I lost 11 pounds very gradually before my weight stabilized at 127. I haven't noticed any problems with food or drinks tasting different. For some reason, I always have insomnia for the first week after a dose increase but then it goes away. I've only had mild concentration problems but nothing notable or problematic. So far, the medication has been remarkable and I can't believe what it's like to live life without so much migraine pain! I hope other people can have the same benefits from this medication.

I have had pins and needles feeling in my fingers and toes, pretty strong too, I've been on Topamax before so I knew what to expect, I've had the loss of appetite and the soda tasting flat, as well. Some confusion with words, not being able to put together a complete sentence, like you know what you are trying to say but it's not coming out correctly. There may be times where you are somewhat staring off into space. My neurologist explained all of the side effects to me before prescribing me drug but also gave it to me as sor of like a ladder, to where I could build up to it so the side effects are not as bad, I went from 25 mg 4 night to 50mg at night for 4 night, then 75mg for 4 nights now I'm on 100 mg at night, so I've gotten used to it again, I still get the pins and needles and the confusion but if someone is considering taking Topamax, ask your doctor about trying to build up to it first by doing 25, 50,75 then 100.

I have been on 100 mg topamax for a few months now, and i was actually having people try my drinks bc i thought they was flat, and i would feel my fingers and my toes go numb and tingle. I honestly never thought for two seconds it was my medication. The only side effects i was warned about was weight loss (which hasn't occurred with me) and that i would be very thirsty, which i am. But i have NIGHTMARES about things im not even afraid of, and i have trouble spelling words i didn't before, and sometimes i can't even remember what i wore last week to school. Im starting to rethink this whole topamax thing, does anyone know any other prescriptions that will help headaches without the crazy effects?

Hi there. A number of years back--maybe 8 or 9 years, I was prescribed Topamax for bulimia and mood swings. I was on a dosage that eventually went as high as 75 or 100 mg. At first it improved my mood and decreased my bingeing, which was very encouraging, but I began to have really awful side effects. First was the cognitive stuff: I couldn't remember people's names and even simple logic puzzles like how to fit a pair of shoes into a shoebox correctly stumped me. Soda tasted flat. Then my moods became somewhat erratic and I began to have intestinal discomfort. Then, even more oddly, my skin started having trouble healing from minor wounds. My hair became brittle and began to fall out. At that point I gave up and stopped the medication. It really felt like I was undergoing some kind of slow poisoning, like arsenic or something.

Now, I've developed migraines and my neurologist has put me on a small dose of 25 mg at bedtime. I've been highly reluctant to acquiesce after my former experience but nothing else has worked and I sometimes have headaches that last over two weeks at a time. I'm wondering if anyone else has experienced side effects at 75 mg but not at 25?

Hopeful in NY

I have been taking Topamax for atypical trigeminal neuralgia for about five weeks - starting at 25mg and working my way up to 100mg each night. The first three or four days I was a bit headache, nothing unbearable but just kind of uncomfortable.

Right from the beginning I had this great side effect that I haven't read anyone else here mention - this feeling of clarity in my head, as though I've always had noisy background static that was now suddenly switched off. I just love it! I was not even aware of this noisy static that had apparently been going on in my head all my life until it had been switched off! And now I feel this wonderful sense of peace and calm. So I have no idea what that is all about, but I'm not complaining. I do remember once reading about generalized anxiety disorder and wondering if I perhaps suffered from a mild case of that (not a very severe case of it), if that is the case, that could perhaps explain the static-y background noise in my head - that is now thankfully gone after taking Topamax. So, I can happily say that I have a pleasant side effect from this drug (sounds like I'm one of the few from reading this forum!)

I'm not sure if it's a related side effect, but I feel more calm and more peaceful. Like it takes a lot to upset me. It's kind of funny, I'm watching my husband get all cranky and fired up about something and I'm just watching him and waiting for him to calm down, whereas once before I would have got hooked and gotten all cranky and fired up myself. Now I just don't get it and I'm thinking to myself "why's he getting so upset about this?" And he's looking at me all quizzically like "why aren't you getting all upset about this?" But it all just kind of slides right off... Interesting because some of the other posters are saying quite the opposite about feeling aggressive on Topamax...

Another really good side effect for me is being able to sleep really well at night, something I've never been able to do (I've always been a really erratic/light sleeper), I don't remember ever sleeping this soundly. I swear I now sleep with a big smile on my face : ) I'm just so happy to be sleeping soundly! And I actually think I might now be less sleepy during the day than before (so unlike other posters) which is likely to be because I'm sleeping better at night. Although if I'm having a lazy day at home, it is very easy to have a big daytime nap (but that’s not really that new for me!), and I definitely get very tired at bedtime, but otherwise my energy levels are quite okay, probably more than before Topamax, rather than less.

I'm still not sure yet if the frequency of my atypical trigeminal neuralgia is less as I usually only get it about once every ten - fourteen days. I think it has been less frequent but I will need to be on it a little bit longer to know if it's working for sure.

I had a scary experience one day after I'd been taking it for about a week or two where it felt like a water balloon had been popped in the back of my head and the water was running down the back of my head and neck. It was the creepiest experience and one that I didn't immediately attribute to the Topamax but after reading some of these posts made me think that maybe it was?

The tingling in my feet has been pretty bad, not just your regular pins and needles but really very uncomfortable/almost painful. Yesterday was the first day I didn't have it, I'm not sure if it was because I've been drinking more milk (I read that calcium could help) or taking potassium supplements. I'm also being mindful not to cross my legs or sit on my feet as I usually do. I've also been very constipated so I'm making sure I'm eating a lot of All Bran every day.

My biggest concern has been the cognitive side effects because I'm due to start my doctoral degree in a few months and need to be extra sharp. I have definitely not been feeling sharp! Again, yesterday was probably about the first day I started to feel a bit better with that side effect too. I've been taking folic acid supplements but I also took the advice of one of the other people who posted here who suggested taking the Topamax with food, so I take it with my dinner and maybe that's what's helping? I'm not sure, but I don't feel quite so dumb! One of the things I felt most ditzy with was time perception, I don't know whether other people experienced this also? Whether it was being aware of the day or the month I just couldn't work it out...

I'm also less hungry - loving that. Weight loss is very slow though (but all weight loss is good), maybe 2kg (4.5lb) in 5 weeks. I was on holiday for 3 of those weeks in my favorite food eating destination surrounded by all my favorite foods and I was pretty much uninterested - now that's a first. Normally I come back from this trip with an extra 5kg! If I wanted to I could still eat, but it definitely makes it easier to abstain, so I know I won’t have to worry about getting dangerously thin as some other posters have written about.

My side effects have definitely changed over time, I'll get something for a few days and then it will go. So I'm hoping that I'll continue to get the good ones and that the bad ones will go. Overall, I'm very satisfied so far with Topamax and seem to be tolerating it quite well, so fingers crossed that it continues to go well. Perhaps different people simply tolerate different medications differently. But from all the reading I've done on Topamax, here's a few tips I've picked up which seem to be helping me: I take it only at night (to help combat daytime tiredness), I supplement with a multivitamin, folic acid, potassium and make sure I'm getting enough calcium, I take my Topamax with dinner, I drink a lot of water, plus I don't take any other meds. I hope these may help some other people reading this and I wish you all the best of luck with your migraines/trigeminal neuralgia/epilepsy or whatever other nasty ailment has you taking Topamax. I’d also love to receive your replies to hear if any of you have experienced any of the same side effects as me.

I have been on Topamax 75mg at night for three months now and is weaning down to get OFF. I have had stomach pains for the past month and I have to force myself to eat...toast. I have not lost a pound. My Dr.'s put me on it for nerve pain, which finally did help after 2 1/2 months into the drug but....the side effects are not worth it. I can't think, let alone play scrabble with my friends (and I was the best). I'm light headed and sleepy. Be careful when they say the drug will help one thing but cause a list of other side effects.

I started Topamax 3 weeks ago and gradually worked up to a dose of 25 mg in the AM and 50mg at bedtime. After one week at this dose I have to start decreasing the dose again due to undesirable side effects. I expected the tiredness, stomach pains (which subsided eventually), diarrhea, numbness in hands & fits( the doctor said that if this happened I should eat a banana for the potassium)...but I wasn't expecting the slowed physical response time and "diminished mental capacity" to be as extreme as they were. It's a good thing that I was on a leave of absence from work because I wouldn't have been safe to be at work or drive to work for that matter. It was quite disconcerting. It was so bad, I laughingly said that I should pin a note to my shirt that said "If I am lost, please return to......." ;-). I am now back to 50mg at bedtime and although am still tired through the day at least I'm not walking around in a drug induced fog. I would like to try this dose to see if it controls my migraines....the residual side effects may be worth it....we'll see??

I also have experienced the numbness in my hands, feet, and face; but I also have experienced blue lips and fingernail beds. Has anyone else experienced that particular symptom?

I have been on Topamax for four years. 25 mg in the am and 25 mg in the pm. I have experienced the weight loss and the migraines have completely gone away along with my wittiness and ability to remember why I am in the bathroom with my pants around my ankles. I have passed up my exit on the highway on my way home several times.... not really sure why or where I think I was going........ I have found myself on a freeway and had to search the signs to figure out which direction I was traveling and then realized I was going to moms.........don't even remember getting in the car but have stuff with me that I was bringing her. I have woken up in the middle of the night in a panic and always have the word right on the tip of my tongue. I feel like I have alzheimers. I am 34. I started out having severe ocular migraines when I was 17 (I don't have head pain) and ended them at 30 after spending weeks in bed, days in ERs and hours heaving into the toilet........ hours, straight, not even able to take a complete breath. I wouldn't even have the strength to hold my head up anymore and I would just lay on my side an heave in my bed, until I would pass out. The MRI showed brain damage and necrosis (dead brain tissue) of my brain from my migraines. I was originally diagnosed with strokes. Imitrex would raise my blood pressure so high the MD's and RNs would hold me out of fear I was going to stroke out. My life just stopped..... I couldn't even move.... ever, I couldn't look out a window, listen to a radio, watch T.V, have a conversation, smell food, perfume......... anything without getting sick. Topamax stopped it all. And yes, I got stupid with the meds....... I lost my train of thought, but I can go outside. I lost some weight, but I can eat, I have lost some, hair but I can work...............I feel like I have more of a life now than I did before. Anytime you introduce a drug to your body you are going to have effects........there are trade offs. If you had what I had, you will be willing to have the trade off. I had gotten to the point that I would have been better off dead, because I wasn't living. My migraines started off manageable and progressively got worse over time. I have to admit, I have tried to come off of the medication... who wants to be tethered to meds all of there life? But when the migraines came back, I quickly went back on the meds.....Drink plenty of water, stay off other stimulants, don't smoke!!!! titrate your doses and then don't miss them.

I am on Topomac for the last 10 days. I have been suffering from stress migraine for the past 6 months and I took professional help only a month os so back. The doctor started off with Sibelium, but this managed to reduce the occurrence. So instead of 4 headaches I now had 2 headaches per week. After a month of Sibelium, he started me on a 25 mg course of Topomac. I did not realize that this drug would be one which I would end reading so much about. Starting on this drug I immediately started feeling lethargic, sleepy and general tingling in the arms. From the 8th day onwards the dosage was increased to 50 mg per day with a review to be done on the 30th day. However other than the general lethargy, sleepiness, and slight lack of coordination, I feel that the drug has helped me get rid of the pain of migraine. I hope I am not speaking too soon, but I will keep all posted of the progress of my treatment with this drug.

I was on Topamax for migraine a few years ago and had to go off of it because my insurance changed. I was crushed!! I was on a lowww dose- only 25mg. morning and night. It helped soooo much- and really- the only side effect was some weight loss and the tingly fingers and maybe weird taste in foods.Also- and maybe it's because I;m relieved of constant headaches- I have MORE energy and even better breathing, seemingly!! ( just now had a problem spelling 'taste'- and have read where that is a side effect but think for me it's just being 51 and a tad flaky with menopause. :) ) I'm back on it now- 25 mg. morning and night- and am very happy. The several times a week migraines ( the real thing) are gone- as are the constant floaters I get in front of my vision, and the things like vertigo and photo-phobia that I have constantly even when I'm not in a full-blown migraine. I just don't get the fatigue, headaches, etc. other people do- in fact, almost nothing by way of side effects. That is no doubt due to the low dose and also because everyone's system is different. I am lucky to have found the one med which nails my migraines! I've read all the posts and am definitely upping my water intake, however- thanks for that head's-up! It never hurts! I would say that anyone with intractable migraine should at least try it- although at a low dose. My doc is very cautious and started at the lowest possible end luckily for me.If you're one of the fortunate people who toleates this med it definitely works beautifully to prevent the majority of migraines in chronic sufferers! It IS expensive, though-even in it's generic form- and I really hope to keep affording it!!
Blessings- A.

I have been on the med for 4 yrs now (I think). 300 mg/day. At times, especially during the winter I get cold hands & feet where they become numb (& tingly from med. I assume). Fingers may turn white. I have thin skin in those areas (can see veins, redness). I wear double layers of clothes during winter/some spring & I live in Missouri (during the day, sleep). Still have tingling some in toes & fingers, ringing in the ears, memory & word loss, little stuttering/thought process before speaking, dry mouth. Fatigue - but I am a busy person. Stomach issues - constipation (but I also don't eat very well). Anxiety - Welbution generic the whole time I have been on this. Weight loss has been nice. After reading a lot of your comments I am wondering if it is time to get off of the medicine & see how I feel

I first started on Topamax when I was 20 for seizures 100mg twice daily. But before that, throughout high/middle school, I was on Depakote 250mg twice daily to control my grand mal seizures, and Imitrex 100mg to control my migraines(about 3x monthly). When the switch was converted the only side effects I remembered was weight loss, I lost about 40 lbs in 1 yr. Also I was taken off the Imitrex and the Topamax also controlled the migraines. I am now 28, and in the past 8 yrs I have had only 1 migraine! I work in a health profession now and try to recommend Topamax for migraines as often as I can just from experience, but I can understand that everyone is made differently and it is not always going to work the same as it did for me. And one last note about Topamax, it just came out in a generic about 3 weeks ago(4/1/09) for anyone that is concerned about insurance copays and might want to give it a try.

I had the most horrible experience with this medication. Part of it was due to my doctors poor care. On Monday I started at a new doctors office which is rather large. I gave him him my history with migraines and told him I was finally ready to start some sort of treatment. My previous doctor in the town had often recommended that I take something but I didn't want to take a daily medication. I am a fairly healthy 21 year old who gets between 5 to 10 migraines a month and many more headaches a month. I told him that my doctor and I had always concluded that my migraines were stress related. I told him that I have been experiencing a high degree of anxiety (I am a junior in college and it's the last week of class before exams.) He recommended Topamax and told me that it was an anti-seizure medication that was often used to treat migraines. He warned me that if I had any trouble with speech to let him know immediately but other than that he hasn't seen any other problems. He prescribed me 50mg twice a day,which he did not titrate as he should have. I took the first dose before bed Monday night and woke up so dizzy Tuesday morning I missed my first class. The dizziness passed and I just thought it was an adjustment period so I took my morning dose. I began to feel some tingling in my hands and feet and my reflexes were slowed (I felt like a drunk driver) I am a manager at a retail store and I forgot to do some of my most basic tasks. I took my evening dose and was described by fiancee as zombie. On Wednesday I woke up very emotional and cried a lot but didn't really think much of it. I took that mornings dose. By midday my anxiety and depression was so high I became suicidal. I had a panic attack while driving, i stopped off at my place of work because i couldn't drive anymore and my manager informed me that I was having a panic attack. I had never had one before. I have not been taking this medication for 48 hours but it has not left my system yet. I sought out counseling and am no longer depressed but I still have a great deal of anxiety and have been on the verge of two panic attacks today. I can write today, which I could not do yesterday. I do not recommend this medication to anything. Especially after what it did to me in just 3 days.

I am a 34 yr old woman who has suffered from migraines for 13 yrs and chronic head pain for most of my life. I have had sinus surgery, my vision checked, TMJ corrected and anything else I could think of to alleviate my headaches. I took various anti-depressants to treat for chronic pain. About 3 yrs ago I began taking Topamax after my grandmother & both my sisters went on it for migraines. We all have experienced success in treating the headaches and both sisters lost weight. Grandmother and I did not. We all still have migraines occasionally and my youngest sister cannot miss a dose w/out having a headache. My grandmother has had to discontinue Topamax because it was effecting her memory, speech, and concentration so badly. All of us experienced the "loss of words" problems at first, but learned to adapt and became used to it. But grandma is in her 70s and its not as easy for her. However, in the past month, I have been experiencing the same thing--memory loss, calling a place or object the wrong name, and poor concentration. I feel like I can't even read today. I was taking 150mg and thought I was pregnant so I started decreasing my dose down to 100mg to wean off. I'm not pregnant and I'm thinking of discontinuing the Topamax anyway. It's bad enough when I can't remember things at home, I can't work like this. I have always raved about how great Topamax is and that if it kept my head from hurting, I would take it forever. Now I feel like I'm in the early stages of dementia.

I am a 25 year old woman with 3 kids. I was prescribed TOPAMAX 3 months ago. I am on 150mg a day. My DR. told me to take them at night before bed and I have to take a TYLENOL PM with it so I can sleep at night and drink 64 oz of water a day and 8 oz of citus a day to help flush out my kidney's, cause TOPAMAX does cause kidney stones. I was having about 17-20 migraines a month before getting on this medicine. They have cut down to about 5 but I take RELPAX and in about 30min my migraine is gone. People who don't know I am taking the TOPAMAX don't notice my side effects. I do have some side effects, memory loss, loss of concentration, I have lost about 15lbs with the help of dieting I was 134 now at 118, spelling, sometimes my words come out abit slured, my eyes are sensitive to light I need sunglasses to go outside,.I feel tired sometimes no matter how much sleep I get. Well I hope this helps...

I am a 27 year old female and have suffered from migraines for 10 years. My neurologist prescribed 12.5 mg for the 1st week, 25 mg the 2nd week, 37.5 mg the 3rd week and 50 mg by the 4th week and then we will re-evaluate on the 6th week. I am on my 2nd day and have experienced a few side effects.....tingling in my arm and lips, frequent diarrhea, carbonated drinks taste flat, trouble typing/spelling and a burning sensation in my eyes. My arm also feels heavy and dead. I am willing to give topamax a try--I can't stand living with my migraines! I think the most bothersome side effect is the inability to type/spell correctly. Hopefully with time, these effects will subside. Wish me luck! (hope I spelled everything correctly!)

I lasted a whole week with Topamax! Side effects I experienced were flat, bitter tasting soft drinks, minor tingling in hands and forearms, some dizziness, and some decreased sensation during sex. But on day 6, shortness of breath set in. I wasn't aware that this was a side effect of topamax until I searched the internet. I'm so grateful for all of the posts here. On day 7, I took my last 25mg topamax and expected my breath to return to me. That was 6 days ago and I'm still waiting.... I've read that it takes 6 days for topamax to clear your system, but I'm eager to hear of accounts as to how long it took for side effects to disappear. Can anyone throw me a bone?? I keep telling myself that tomorrow it will be better, but "tomorrow" hasn't come. All other side effects are gone.

As mentioned in a previous post, I started Topamax the end of October. Since then, I have lost 25lbs, I am 5'2 & weigh 90lbs.

I have been taking 50mg's, but as of last week, I have cut back to 25mg's. It has been really stressful for me because I am scared about getting my migraines again & possibly going thru the HORRIBLE side effects I went thru when I got on the pill.

In the last 8 days, my anxiety level has been really high. I have been taking more (sometimes 2x a day) of my .5mg of Xanax. I have felt myself gasping for breath from time to time. I think that my headaches come from tension/stress, my jaw tenses up. The headaches feel like brain freezes. I am also able to verbalize my thoughts better, so I don't feel so stupid.

My goal is to be more clear-headed, gain 15/18 lbs & hopefully my complexion will clear up. I will probably stay on 25mg's 2 more weeks before getting off. I will let ya'll know how it goes.

I took 400 mg of Topamax for about 5 months for migraines. It did help some when seroquel and verapimil were added to it at the end. I had a severe psychotic reaction and was diagnosed as bipolar. The dr wanted to put me on a high dose and let me spend the rest of my life twiddling my thumbs rather than admit Topamax was the cause. These psychotic event have been documented since the 90's.

It took me 3 years to regain my typing ability. I still scramble some words 4 years later. I proof read, but I may have missed some errors in this post. Thanks you Topamax!!

I am a 42 year old woman. I started taking Topamax in March of 2008 for severe migraines. The migraines often caused vomiting and for my body to jerk similar to having seizure. I have had migraines for the last 15 years, but prior to starting Topamax I was having migraines almost every day (for about 6 months). My life had come to a stop. I had been through all of the neurological tests, and CT scans, etc. with no results. Topamax has nearly halted my migraines. I have a severe "head-ache" about every 6 weeks now that last 3 days. A huge improvement! However, my doctor had said that I should not be on Topamax long term so I have tried going off of it twice in the last year, each time on the 5th day to be hit with an all consuming migraine. I had come to this website to find out why I should not be on Topamax long-term to discover that many of the other health problems that I have been complaining about in the last year are probably a result of Topamax and the doctor did not ever suggest that was the case. I have TINGLING IN MY HANDS AND LIPS...the doctor thought this might be my thyroid, but that test was normal. I have had REDUCED VISION, the doctor said it is due to age and working on a computer all day. I have had JOINT PAIN which they are treating with an anti-inflammatory and suggested it’s probably the onset of arthritis. I have had WEIGHT LOSS, SHORTNESS OF BREATH, and the PAIN IN THE BACK OF THE HEAD. These are all things that I see others describe as symptoms of Topamax! Wow! I wish my doctor would have told me this so I didn't think there was something else wrong. I WILL NOT STOP TAKING TOPAMAX. Even if taking Topamax meant that my life would be 2 years shorter or something like that, there is no living in that kind of daily pain. But I am grateful to know that the symptoms are normal. Topamax has giving me back my life.

I am going on topamax for the second time. I think the drug is going to be the best choice for me, personally. I am on it to treat both, epilepsy and chronic migraines. The first time I went on it, I titrated partially to my dosage (400mg) and had to stop because my potassium dropped dangerously low and I was pregnant at the time. I have since had my daughter and am giving it another go. I am having the loss of appetite, redness and tingling of hands and feet, some irritability. I am up to 100mg now and am titrating up to 400mg. I hope that it will subside after a while. I already don't care for carbonated beverages and you are supposed to avoid stimulants if you have migraines and epilepsy anyways people! So figure it a blessing that you can't drink carbonated beverages that MOST contain CAFFEINE aka STIMULANT!!! HELLO!!! As for the other symptoms, i guess you have to weigh the benefits to the risks. I certainly hope it works for me and everyone else. Last time I took it, it could have caused heart failure. That was a biggie! So I would say, Get your routine labs and so long as you can withstand the side effects and the reason you went on the medication is being controlled...... Thank you topamax!

I am new to Topamax. Just started for severe/horrific migraine pain - I have been getting migraines that lasted 8 days long without relief for the past few years, popping imitrex like m & m's. Mine seem to be related to a drop in barometric pressure as well as to being perimenopausal. They were ruining my life. I am currently on the 25 mg in the am dose and 50 mg pm dose schedule to titrate up to 50 mg twice daily. So far I have had only 2 migraines in the past 30 days instead of 8-16!!! I am a much happier person- I can't even describe it. People at work even tell me I LOOK different! I do however, have some intermittent tingling/numbness in my fingers mostly, passes quickly, little back pain, and some little headaches that come and go. I can so deal with these. I have only had to take Tylenol or Motrin on three occasions in the past month. I used to take two imitrex and still had take 400mg of Motrin and 1000 mg of Tylenol just to numb my migraines. Can I tell you I used to be somewhat non-functional and still go to work everyday- I am a nurse!
So far Topamax has given me my life back because I seriously considered driving into a tree one day on my way to work before starting it. Wish me luck.