Topamax and insomnia

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!

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.

First I want to say, after reading several posts, that it seems a lot of you are taking Topamax without food, which may be causing your "spaciness." My doctor suggested always taking it with food, even though it says with or without food, and I only experienced spaciness the few times I took it at bedtime without food. Once I started taking it with breakfast and dinner, that never happened again.

I am a 48 year old woman, prescribed Topamax in September of 08 for migraine associated vertigo without headaches, with facial numbness. The first thing I noticed was I immediately had headaches, which to me indicated it was dehydrating me as that is the only time I get a "normal" headache. So I knew I had to drink a lot of water. Soon after starting Topamax I developed a dry cough that lasted the entire time I was on the med. I did not relate it to the drug at the time, however. It never even occurred to me. After about two months on the drug I started having trouble breathing with extreme dryness in my airways. I was prescribed an albuterol inhaler which did not help. I was then prescribed a corticosteroid inhaler which also did not help. I thought the trouble breathing was from taking Nadolol which I was prescribed for occasional heart fluttering - the neurologist said this was a normal side effect of Topamax. I stopped taking the Nadolol but the trouble breathing continued. I also had more migraines with vertigo and facial numbness than before I started taking the drug. I hoped it would eventually stop and the drug would kick in to help the vertigo, so I stayed on the drug. I had very minor tingling in my feet, but it was tolerable. I became very stressed out, had trouble sleeping, depression, my face started breaking out in November (and still is), I lost interest in everything that I normally enjoy - reading, photography, following politics in the news (sort of an obsession of mine). In December I was so depressed that for the first time in my 11 year career I started canceling appointments and eventually took three weeks off from work to "re-group." In January the neurologist decided that we would increase the dose from 100 mg to 150 mg for one more month, and if it did not get rid of my migraines with vertigo, we would discontinue the drug. The first day on the increased dose I had a killer headache, and I drank 150 ounces of water before it went away. That night I did not have to go to the bathroom during the night, unheard of for me. That's a lot of water to drink and not have to pee. Within two days of increasing the dose, my cough became much worse, and within three days, the breathing became more difficult. Within five days, I was having trouble speaking because my airways felt so dry. I called the doctor the next morning and he said it was not the drug, but if I wanted to, stop taking it. So I went off it cold turkey, per his instructions. I had rebound migraines every day for a week or two and my heart was pounding, sometimes for three or four hours at a time. Eventually the cough and trouble breathing went away, however, I had to continue drinking lots of water or I would notice that I didn't have to urinate, sometimes not at all. Again, unheard of for me. I saw a cardiologist at the neurologist's urging and they said the heart pounding was just anxiety. I disagree, as did another doctor of mine. We both believe it was withdrawal. I have now found out (by getting copies of my medical records) that the neurologist is now attributing all of my side effects from the Topamax to "somatization." In other words, psychosomatic - not a side effect, but just a way of getting medical attention. I am seeing a few people on this board who have also experienced a dry cough and trouble breathing. Can I have the same side effects as other people and have them still be psychosomatic, even though I had no idea those side effects could occur? I don't think so.

I have a theory that Topamax interferes with hormones which causes a lot of the side effects like lack of concentration, memory loss, anxiety, depression, insomnia, acne, and hair loss - all symptoms of peri-menopause and menopause. Ask any woman in her 40's or 50's if she has these symptoms and most of them will say yes. My face has not been this broken out since high school! My hair is falling out at a rapid rate. I won't even bother mentioning these to the neurologist. He'll just say it's not the drug.

I'm very frustrated and not sure what to do at this point. The neurologist has me taking a supplement called Migrelief now, but I think it takes three months to kick in, so I have no relief at this point.

Has anyone else experienced the trouble breathing with dry cough? I don't believe for a moment that it was psychosomatic.

I have been using Topamax now for 8 years off and on. I stopped the Topamax about 3 months ago, something I do once or twice a year to try and feel 'normal' again. Then last month I went to see my regular doctor because of numb, pale, swollen, achy fingers, swollen ankles and feet, and for a papercut on my knuckle that overnight turned into a radical staph infection. The NP ordered a full blood panel and the results came back positive for Lupus. I have had so much pain in my hips and knees, more frequent headaches (not migraines), insomnia and vision trouble. The past two weeks I have been super irritable and nauseous. I still need to have a 2nd opinion and/or referral to a rheumatologist, but is all of this related to taking the Topamax? I take 2 Imitrex injections if a migraine comes on and am hesitant to start the Topamax if it has indeed induced Lupus. Am I crazy or is this common??? THANKS for the feedback...SM.

I am on my second time around with Topiramate (generic Topamax). It has been a year, and I have no reason other than weight loss to take this drug. I also don't know if the online generic versions are really Topamax except I do experience some of the side effects I read about, the tingling arms and legs, the itching, and the foul tasting carbonated drinks. I have started at 25 mg. per day 3 days ago, and am at 250 mg today with no cut in appetite except an hour after I take the pills. Do you think they are even real?

I have been on Topamax for about two years for migraines, and was very pleased that after the first month or two, most of the noticeable side effects (dizziness, flat-tasting soda, etc.) disappeared, and the Topamax has been very effective in cutting my migraines in half. However, I've recently begun to question whether other health problems I've been experiencing are actually Topamax side effects and I just didn't realize it.

The first is intermittent stomach troubles that have been ongoing for the last year. Starting last January, I started experiencing diarrhea, stomach pain, and other persistent gastrointestinal problems, and through online research, I decided that it was probably either a spastic colon or Irritable Bowel Syndrome. I lost 15-20 lbs. in the spring and summer, but the problems would always recede before I took them to my doctor, then resurface just long enough to irritate me before disappearing again. It never occurred to me until recently that these could be Topamax side effects.

The other possible side effect that I assumed was an unrelated problem is interruptions to my sleep pattern. I have been experiencing some occasional bouts of sleep paralysis, and which researching this, read that in normal sleep patterns, one is supposed to enter REM sleep (when dreaming occurs) after about 90 minutes. I frequently enter into dream sleep in as short as a 20-30 minute nap, which does not seem to be normal. Again, researching this, the only two explanations that came up were narcolepsy, which I obviously do not have, and that my normal sleep patterns are being interrupted "by medication." So I'm back to wondering if it's the Topamax. Has anyone experienced similar sleep symptoms?

I am a 21 year old female and have been on Topamax since October of 2006. I am up to taking 250mgs a day having a constant headache and getting a migraine about every week. I have had such a range of side effects and symptoms that I can't tell the difference nor know where to begin. The most recent is muscle spasms in my eye lid and leg that won't go away. I have spasms infrequently all over, but these have been pretty constant. I also tire very easily though I always get 8 hours of sleep a night. Though those are not always 8 full hours of sleep, because I do have boughts of insomnia. I have also dealt with the intestinal problems to the point of thinking that I had appendicitis. I have had multiple trips to the hospital for abdominal pain and severe migraines. I have had the vision problems - blurred, dizziness, vertigo, and the weird one were my eyes jerk back and forth. I rarely have all at once and they have come and gone throughout the 2 years, but they have come back

I think the most mysterious one of all are the lypomahs - these little painful nodules under the skin that just appeared. They are mostly on my abdomen, but have found them on my chest as well. Any one else heard of this?

I've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.

I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!

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.

Ive only taken the pill 2 times so far. Already looking for the reason why my Dr. Pepper tastes bad, and I haven't slept since I took the very first one. I studder and can not complete sentences after I take it. I have a call in to the Dr. He said it will go away. Im not so sure I believe him. Insomnia I am a single mom, and work in a nursing home how unsafe....

I took Topamax about 6 years ago for migraines, and experienced no side effects. Just started it up again 3 days ago, and I feel like I am totally drugged and my head is spinning, can not drive, can barely hold a conversation, only started with 25mg, and can say that each day I feel a little better, but the only difference this time is that I am on Lexapro and my Dr. said the side effects could be worse till I get used to it..anyone else take this combination? And how long till I can function again?

I take topamax for migraines. I'm still feeling this out. When I first started about 2 months ago I went through all kinds of crazy symptoms. My husband thought I was loosing it. For some reason my doctor wanted to start me out right away with about 50 in am and 50 at night. The first month was rough.
I read the pamplets and took myself down to a lower dose and worked up slower as the company suggest. I not only had tingly hands and extremties.
But outburst of weeping and anger like never before. Like triple the pms symptoms. There were just all kinds of weird things. In this 2nd month I am taking 100 in the am and 25-50 in the evening. I am now experiencing the acne, itchy skin, inability to concentrate, apathy. Insomnia. In general I don't get chronic headaches. But have yet to see menstrual migraines subside. Sill feeling my way through this. You cannot stop this med abruptly. As many meds. Do not tell you how dangerous they are to stop abruptly. I think every one is individual. Soda's are not flat for me, but enhanced. More carbonated. Which I like. Strange I know.

I started taking 100 mg. per day of Topamax a month ago and have ok results, I still have a dull headache everyday but it doesn't turn to a migraine but I have no desire for food and carbonated drinks taste flat and it has changed my mood also. I would like to stop taking it.

Topamax is w/out a doubt the WORST drug I've ever been on. It made me brain dead. I couldn't find a job on Topamax. I would be in interviews and would space out and couldnt' answer questions. People looked at me like I was crazy. I felt like I had Alzheimer's at 38, especially when my neuro prescribed Exelon, the drug for Alzheimer's to counteract the cognitive side effects. As I said, couldn't find a job, had no insurance. My topa-lovin' neuro was giving it to me and getting me on the patient=ass program through Johnson/Johnson, the maker's of TM. She didn't want to help me get on another anticonvulsant PA program. Finally, I had to charge another med on my credit card because I couldn't take this toxic gunk in my body anymore. The decay of my mind has escalated to the point that I don't know if I will ever be back to myself again. BEWARE of this drug. I haven't even covered the eye pain, insomnia, headaches, leg cramps (i can go on).

I have been on topamax for almost a year now. I had been having a nearly constant migraine cycle for three months which had to be broken with migranol nasal spray. I then started on escalating dosages of topamax. By 100mg I realized that life was wonderful but that I couldn't retain much information which was a problem as I had just gone back to school for an advanced degree. Upon consultation with my doctor, we reduced my dosage to 50mg and things improved dramatically.

I have experienced some fingertip and toe tingling which have been completely tolerable. I take the medication right before bed so that I don't have problems with fatigue during the day. I do get out of breath easily when I exert myself and carbonated beverages taste horrible. But my migraines are under control.

I have a Ph.D. in molecular biology and a few years of neuroscience research under my belt. I would like to say that it is EXTREMELY important for people to understand that no medication is going to work identically for any two people. What works for one person, may not work for everyone. I know people who swear by imitrex but this medication does absolutely nothing for me. You have to be your own advocate when it comes to medications and treatments. Your genetics will also determine how well, if at all, you respond to any medication. For some topamax is a life saver, for others it will be the bane of their existence. This will always be the case for any medication. Be tolerant of others' experiences and understanding of each others' pain and progress will be made.

My sister in law has been taking topamax for at least two years now for migraines, I think 50mg a day. She has developed serious issues, which she nor her doctors believe is from the drug. She has back pain, moodiness, sleeplessness, extreme muscle cramping. Most recently, her legs have become extremely swollen, larger than any pregnant woman I have ever seen. The skin on her feet is breaking open and peeling. The doctors can't find the cause, but I think it is the topamax. Has anyone else had this swelling?

The doctors haven't been able to determine if I had a stroke or drug related (symptoms- if the slurred speech, facial palsy, memory problems, problems with working memory, and a 30+ drop in IQ points, weakness right hand). I had an open MRI and nothing was abnormal. They took me off the topamax and there has been no change and put me on verapamil sr. Trust me the verapamil is horrible as cause anxiety, insomnia, increase in appetite and congestive heart failure. At this point, the only thing that the topamax is responsible for was a decrease in appetite ( Yup, I had a stroke). I can't wait to get back on the topamax.

I had a really bad time on this medication. Side effects included -

swelling of the feet and ankles, loss of memory including names of close friends, sleeplessness, psychosis, paranoia, loss of appetite. I lost my mind, in fact. Far from "taking the edge" off my highs, it magnified the high to a previously unreached level.

Hi,
Doc put me on Topamax for PTSD due to MVA. I am at 200 mg and having tingling in fingers and acrid taste in my mouth. Thinking I might stop taking it and just suffer the anxiety and stress. As others, I have lost some weight with the drug, in weighing the pros and cons guess I will check with my doc and see if he can reduce the dose. I was having trouble sleeping and getting flashbacks of the accident and the Topamax has helped but I really don't like the side effects. Best of Luck to all.

sleeplessness during the night.......drowsiness, no energy, and feeling lethargic during the day and produces alot of gas!

I have been taking 25 mg Topamax, 4 doses per day, for 5 months now. I am taking it for nerve damage in my ankle. I have previously taken Neurontin had to discontinue because weight gain.

I have lost 10 lbs and have trouble sleeping at night. I also have short sttention span.

After reading these horrific side effects, I am not alone. I have only began taking topamax 25 mgs once a day and then I am suppose to increase it to 200 mgs. in a month which I am not sure I am ready to do that. I take it for migranes, I have had tingling in my feet and numbness in my hands, sleeplessness and loss of appetite. But I feel that I am getting better even though I am suppose to increase he dose next week, I am not so sure what I am going to do yet. Any siggestions?? I am going to call the doctor but then again it is not really his call , it is mine, do I want to live with the headaches? or can i stand the side effects until my body gets use to the medication?