October 2th
2009
6:45 PM
I took Topamax 50 mg for about 2 months and experienced a change in menstrual bleeding. I wonder if Topamax effects progesterone levels. I had light spotting 5 days before period due for both months. This medication also made me very depressed and angry. I quit taking it about 5 days ago and felt the depression lift on the 2nd day after stopping the medication. This was my 2nd round for Topamax. My first time taking it I worked up to 100mg and lost 15 lbs in just a few weeks. I had no appetite. I also go very sick with a respiratory infection and dry coughing. I had menstrual problems with the first round too but didn't figure out if may be the Topamax until my 2nd round. It did help my migraines significantly. But I'm uncertain how if potentially messes up menstrual cycle. The warnings for the medication says "menstrual problems" but doesn't go into detail. Anyone else have menstrual problems.
-- By ramsey2010 | Reply | (2) replies | Private Message me
September 22th
2009
2:37 PM
I stared Topamax about a month ago and at first I was completely out of it. I couldn't remember anything to save my life, my speech was slurred and my brain was just in a fog...and I'm only 25. After about 2wks that eventually went away, however, I still cannot drink carbonated drinks, that taste flat and have a tangy taste to them as well, its gross. The one side effect that really bothers me about this medication as well is that I'm always nauseous. I haven't weighed myself lately but I definitely have lost weight because I never want to eat anything. The nausea seems to be more of an issue than the migraines. I was getting them about 3-4 times a week, now I get them about 1-2 times a week. By week 4 on the medication I started to break out on my face/chest/back really bad too, and I haven''t had acne since I was a teenager. The other odd thing is I feel like I've constantly had my period while on this medication too. Has anyone had any of these side effects as well? It's only been a month so I figure I will try a little bit longer and see if it helps or if I have to go up a little bit more in dosage if it helps but at this rate I'm thinking I may just need to try a different medication. The other bad thing is that I have become extremely agitated lately, which I'm sure my poor boyfriend can agree with because he gets the worst of it. I feel like my personality definitely has changed on this med...
-- By cjohns68 | Reply | (1) replies | Private Message me
September 10th
2009
10:07 PM
After after a few months on topamax I went on lexapro for my mood change. I lost weight, had the metallic taste, loss of words , stumbling and more. I have weaned off because I could not stand the side effects. I still have migraines frequently. I truly believe the topamax has permanently changed my personality. I cannot get off the lexapro. Also I believe I have some kind of kidney problem left from it. Is all this possible?
-- By jonails | Reply | (1) replies | Private Message me
August 22th
2009
5:32 PM
I began getting debilitating headaches 3 years ago. They were everyday and not the classic headache (no visual, nausea etc). It felt like a jackhammer to the back of my head every single day. My neurologist told me they were migraines. I was skeptical as every other migraine med had not worked. I began on Topamax at 25 mg twice daily. I started at this dose for a month. The body really needs to adjust SLOWLY to this med. My side effects were pins and needles in the hands and feet, strange taste in foods, flat tasting sodas, drastic cut in appetite. My doctor assured me these would go away. Headaches did not start to improve until the second month when I went up to 50mg twice daily. By the third month I was up to 100mg twice daily and I feel like I have my life back. I still will have occasional migraine breakthroughs, but nothing like the misery I had before. Within 5 months or so, food began to taste normal again and the pins and needles stopped. I dropped 30 pounds total on Topamax. It has been a life saver for me!! My advice for anyone thinking about this drug is to ease your way up slowly until your body adjusts. One week on a dose is not enough time.
-- By bonbonj29 | Reply | (1) replies | Private Message me
August 21th
2009
9:56 AM
I conducted a search for "long term effects of Topamax" and discovered this site, and am so glad to have done so. I have been on Topamax for around 2 years now, at the 200mg level, for chronic, sustained migraines. I have figured out, through tracking, that I will get a migraine lasting 3-4 days during ovulation and again on my period. The Topamax has helped considerably with the headaches, although I do still get at least one per month. It is generally not of the same duration, though, and is fairly easily controlled with pain meds.
I've been a bit worried, though, about continuing the drug for life, as it seems I need to do to control these headaches--thus the search. I, too, have experienced the "mental fog," and general decreased cognitive abilities. I am an extremely intelligent person, a writer, a former English teacher. Why am I unable to pluck words from my brain when I need them?
I've also experienced the tingling and numbness in various extremities, sensitivity to cold, blurred vision, fatigue, and loss of taste sensation. I've also become a royal bitch to my husband and children--although I had no idea that this could be related to this medication. I feel relieved to know this now...to know that I can change and be the person I once was. I don't like myself very much right now, but it's like trying to stop a runaway train. I can no sooner prevent or alter my knee-jerk reaction to things than I can stop that train.
I've been off of the Topamax for approximately two weeks now, and have already gained 5 pounds, although I work out 2-3 hours daily and play competitive volleyball 2-3 times per week for several additional hours. I had initially lost around 18 pounds and kept it off, even when my appetite returned. I'm uncertain, though, why I'm gaining the weight back so rapidly. I'm eating fewer than 1500 calories/day and exercising like crazy. It doesn't make sense.
I don't care about the weight, though. My chief concern is the return of my cognitive function. Has anyone experienced a return to their prior cognitive state after getting off of this medication?
-- By hintonrae | Reply | (1) replies | Private Message me
July 20th
2009
12:57 AM
Hi. Im a nurse who was put in Topamax for mood stabilization in January of this year. Tapered up from 25 mg a night and now am on 200 mg a night. I have lost ZERO pounds although I have no appetite and cant stand the taste of a soda. I just wanted to share my nightmare. I have not had any tingling or numbness, which is a main side effect.
I do have a terrible metallic taste in my mouth and my mouth never feels clean. YUCK. Sodas flat. My personality is flat.. I am exhausted. My friends say the person they knew is gone, my appetite is gone.
My back hurts all the time like it's very tight in the kidney region....I cant spell, I cant remember yesterday, I sleep all the time when Im not working...I drop things, I don't remember what I was doing 10 minutes ago, I feel like I am on the outside of my body looking in.
My vision is blurred somewhat at times.
I work for a neuro-psychiatrist. I have decided to taper myself down. I don't think it has done anything but made me so flat I am not here anymore. Who wants that? Looking back, I was not in need of mood stabilization but a vacation.
The only thing it has helped me with is it has stopped the desire for Klonopin which is normal for Topamax. It works on the receptors in your brain that make you crave benzo's. I took my Klonopin as prescribed.
Im thinking I want my old self back. I miss laughter. :(
-- By gypsynurse | Reply | (1) replies | Private Message me
July 3th
2009
1:50 PM
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!
-- By suzieq1958 | Reply | (2) replies | Private Message me
June 19th
2009
10:12 PM
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!
-- By juniorjr | Reply | (1) replies | Private Message me
June 15th
2009
8:03 PM
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
-- By serpo | Reply | (1) replies | Private Message me
June 15th
2009
8:00 PM
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?
-- By maverhe | Reply | (2) replies | Private Message me
June 9th
2009
1:28 PM
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.
-- By simon09 | Reply | (1) replies | Private Message me
May 26th
2009
1:46 PM
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!
-- By jescape | Reply | (2) replies | Private Message me
May 19th
2009
3:03 AM
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.
-- By sithpadawan | Reply | (2) replies | Private Message me
May 17th
2009
12:31 AM
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?
May 5th
2009
9:29 PM
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.
-- By dragonfly1 | Reply | (1) replies | Private Message me
April 23th
2009
6:21 PM
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?
-- By carrie6 | Reply | (2) replies | Private Message me
April 14th
2009
5:52 PM
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.
-- By rebecca731tx | Reply | (1) replies | Private Message me
April 13th
2009
2:17 AM
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!!
-- By topamaxsurvivor | Reply | (2) replies | Private Message me
April 10th
2009
12:03 PM
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.
-- By gskinner | Reply | (2) replies | Private Message me
March 28th
2009
9:20 AM
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.
March 1th
2009
5:06 PM
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.
-- By brbarb | Reply | (10) replies | Private Message me
February 21th
2009
12:35 AM
Topomax has been the only drug to keep my migraines under a reasonable amount of control with no ill effects. I really can't complain about anything with this drug other than its cost. The only thing I ever experienced was early on when I was still adjusting to it, sometimes if I was sitting still with my arms crossed, or I was laying down, my arms and hands would suddenly feel detached from my body and big like balloons...like they weren't mine or something. I'm not complaining though, I actually really liked the feeling -- it was accompanied with a slight light-headedness. :)
-- By rstynls9 | Reply | (1) replies | Private Message me
February 18th
2009
12:07 AM
I am a 25 year old graduate student that began taking Topamax for migraines after I was involved in a bad car accident. I started taking Topamax in April of 2008 and by July I could barely formulate sentences, couldn't remember simple things like where I parked by car (in front of my apartment) and my family member's names, simple math was impossible, I was always tired but could never go to sleep, had numbness in hands and feet, and was very moody with suicidal ideations. I was then referred to a neuropsychologist to assess any possible brain damage from the accident since I was now having cognitive problems. They tested me for brain damage where I was diagnosed with Severe Brain Damage, I was reading on a 8th grade level, did math on a 4th grade level, needed to begin speech therapy immediately and my doctor felt I needed direct supervision at all times. I was initially told by my neurologist that the medicine would help with the migraines but would "make my thinking slow". That was a huge understatement. I was a 4.0 graduate student in the middle of my program and I suddenly couldn't perform basic daily activities. I have been doing much better since coming off the medication. I have the migraines less frequently but they are still pretty bad. I have regained most of memory, reading, and math skills back the rest is attributed to the car accident. I wouldn't recommend this medication to anyone and I think it should be taken off the market because it almost destroyed my life and had me and my family worried to death about a condition which symptoms were clearly being exacerbated by Topamax.
-- By kesh_816 | Reply | (1) replies | Private Message me
February 2th
2009
8:21 PM
since starting topamax in may 08, 50mg twice daily, i have had constant pain under my right rib, feels like something is eating a hole straight through to my back where the pain wraps around. also have some trouble breathing, constipation. have had gallbladder ultrasound, hida-scan of gallbladder, endoscopy, cat scan of chest and abdomen and chest x-ray, along with a zillion blood tests all showing normal. no one can find the source of my pain, the only thing is how the time corresponds with my pain and when i started the topamax. can anyone tell me of any similar side effects they have had, is it the topamax causing this? and should i stop. i'm feeling as if i'm poisoning myself. i need help. thank you for anything you can tell me.
-- By dawnw13 | Reply | (3) replies | Private Message me
February 2th
2009
5:36 PM
I've only been taking this drug for two days - 25mg in the evening - and I've already got side effects. I get tingling in my fingertips, and all down along the bottom of my fingers. I've been feeling nausea as well, and writing this, my brain feels a little blocked and slow. I also think I'm losing my appetite, which could be a good thing, considering that I do need to lose weight. But I don't think it is worth it if I end up getting side effects like the ones that have been posted by other people.
I'm a writer, and I cannot afford to lose my memory, or suddenly not remember how to spell words, or to communicate effectively. Should I stop taking Topamax?
January 29th
2009
12:53 AM
I had to stop taking Topamax because it destroyed my life...life-long friends and my long-term relationship all fell apart because of my extreme pessimism which was not me. I actually gained quite a bit of weight. Also, I had very obvious intellectual problems.
I have been off of it for over a year and have just realized my moods are completely different from before the drug and my memory is nothing like it used to be. I am concerned about long-term side effects even after stopping Topamax......
January 13th
2009
4:21 PM
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?
-- By riclavelle | Reply | (2) replies | Private Message me
December 23th
2008
2:40 AM
I've only been on topamax for about a month and a half and already I'm feeling some interesting side effects. In the first week of taking the medication I had such pressure behind my left eye I thought it was going to pop. It eventually went away and has not come back (thank the Lord). I also experienced some pretty nasty numbness, tingling, and uncomfortable pins and needles in my fingertips and toes/sole of my foot. The tingling in my hands usually lasted a few hours and the tingling in my feet only lasted for a couple of minutes. This tingling is never predictable.
Eventually the tingles went away and I was tingle free for a while. But in the past few days they came back. It actually coincided with my PMS. The tingles came back and with intensity about three days before my period started. I was wondering if it was common to have a side effect return or increase in intensity around your menstrual cycle? My hormones are pretty nutty and the reason I'm on topamax is to stop severe migraine auras and slight seizures that are tied to my menstrual cycle.
The feet tingles are the worst. It feels like I'm being jabbed with needles and I hate when it happens while I'm sleeping because it wakes me up and I can't fall back asleep again until they go away... they are that irritating. The hands I can deal with because I'm used to my left arm going numb when I was having the auras.
My sleep patterns have been disturbed because of topamax... I'm not too peeved about that. I still manage to get enough sleep. However there are times when I'm out with friends or having conversations and I'll know the word I want to say and I'll just bust out the wrong one. Like for example saying symphony instead of sympathy. My friends have gotten used to it and know what I'm trying to say. It cracks them up when my word salad produces sexual innuendos on accident when I really mean something else. BUT it's really messing up job interviews at the moment. I'm a bright and articulate person who is getting her BA in Anthroplogy and Archaeology, minor in History and am trying to get research assistant jobs at museums and universities. It's really hard to get a job when you are sitting there sounding like an uneducated moron high on crack.
I haven't had problems with memory, thank the Lord. Even though I've got the word salad going on (and it's strange... the word jumbles are only when I'm speaking... I'm super coherent when typing) I'm not forgetful. I was able to make it through finals week perfect, while juggling a full work load. I hope I don't start losing my memory.
I haven't lost any weight (AW SHUCKS!!!!!). I was looking forward to that one. How soon should I expect to lose weight by, if I do in fact lose weight? I'm a difficult duck when it comes to weight loss. I've been at a stable weight since I was 13. I'm an athlete so my body is my temple sort of thing. But in the past two years I've put on a little bit of unwanted weight in certain areas when I stopped hitting the weight machines :( My question is, if I haven't lost it yet... will I lose any?
I'm also classified as type II bipolar, obsessive compulsive, and anxiety disordered. I've noticed my mood has stabilized. I'm not as all over the place as I used to be. My highs could get pretty high and when they would get up there my obsessive compulsive would almost go on a little joy ride. And when I was low, I was super low and my anxiety would take the depression out for a spin. But now I feel a calmness and a zen that I never felt previously. It's not an apathy I can certainly tell you that. I feel like I am in control of my life. I thank topamax for that.
Reading all of these posts I just worry that the honeymoon period of my medication maybe over. I worry about other side effects cropping up. I think that I can deal with my tingling extremities and that I can manage my word salads. I don't want the pressure in my eye to come back. I also don't want to start exhibiting the other side effects. What is the possibility that I will start exhibiting more side effects or are you generally stuck with what initially presents in the first month or so? My doctor also does NOT intend on increase my dosage. He thinks 50mg once a day will do me just fine. Oh and one last question, anyone else experiencing the side effect increase coinciding with PMS?
Sorry for the super long post! All replies are welcome!
-- By msdickso | Reply | (1) replies | Private Message me
December 20th
2008
10:49 PM
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?
-- By mjd | Reply | (3) replies | Private Message me
December 12th
2008
10:57 PM
My doctor prescribed 25 mg Topamax every evening for headache prevention. I had headache and nausea for several days before starting the Topamax, then after starting the Topamax, the headache pain got worse and I also had pain in my back and ears. I did not get the tingling in extremities but noticed some decreased sense of feeling in my face for a few hours after taking the medicine. The pain got progressively worse then I became depressed and suicidal. I was convinced my life was so bad that I wanted to die. I take 100 mg Zoloft daily for depression and still feel a little depressed and was hoping Topamax would help with this, too. I took Topamax to help with headaches and depression and it made both much worse to the point where I was seriously suicidal. I stopped the Topamax after only 5 days and the pains and nausea have gradually decreased to the point where today I have been virtually pain free most of the day for the first time in 2 weeks. I read on the internet that there is an increased risk of suicide while taking anticonvulsants, but it's rare. I am convinced I am one of the very unlucky people who becomes suicidal on this medication. I have 2 beautiful children, a great job, excellent health other than headaches and depression, and plenty to live for. I still can't believe that less than a week ago I just wanted to die and didn't care about seeing my children and family ever again or ever getting back to my job that I love. It's so hard to believe a drug can cause that kind of thinking. I'm pretty sure my doctor doesn't think the Topamax caused me to be suicidal and has no intentions of reporting my case to anyone. I suspect it's not as rare as they say to become suicidal on this med, it's just not reported enough. I wouldn't be typing this if I were still taking Topamax because I would be lying in bed suffering in pain, sleeping, thinking about how good it would be if I would just die. I went for a CT scan of my brain soon after getting off this med and I remember thinking that I hoped I had a tumor or anurism so I could die. I found out today I don't have a life threatening illness and I am happy about that now and can't believe I was thinking such bad things only a few days ago. I hope doctors take more care in prescribing this medication to people who have a history of major depression because I'm afraid people are going to feel like I felt and kill themselves on this med. I think this drug is great for some people and should be available, but people need to be warned that they may become suicidal and given instructions on what to do if that happens. I had no idea if I should go to the ER or call someone or what, so I just got people to watch my kids and called in sick to work and stayed in bed for a few days. I don't miss work often and am very committed to my job and my children are first in my life, so not being able to care for my kids or go to work made me feel so much more depressed. My doctor referred me to a neurologist and I hope to find some way to get relief from the head, neck, and back pain and the nausea. A few days ago I thought I would kill myself if my doctor couldn't find what was wrong with me and I felt terrible for no reason. Now I have hope. It's just not right that a drug can take away the ability to have hope.
-- By jenny1128 | Reply | (1) replies | Private Message me
December 9th
2008
3:22 PM
I recently increased my dosage from 25 mg to 50 mg and noticed my hair has been falling out. I just feel tired all the time. I thought I was going crazy until I read this site! I will talk to my doctor very soon. I did not think there would be problems with a "low" dose.
-- By flmanatee | Reply | (2) replies | Private Message me
November 17th
2008
7:33 AM
i was put on topamax for migraines back in aug 07.
well, i stopped it like 5 months ago. (2june 08) i still feel "out of it" like i'm here but im not. headaches came back but i would rather deal with them than all these side effects. i got severe panic attacks and nervousness, MAJOR HAIR LOSS, AGORAPHOBIA (FEAR OF LEAVING MY HOUSE CUZ IM SCARED TO HAVE ANOTHER PANIC ATTACK), i constantly feel dispatched from my family (i have 3 boys and a husband) every day i feel sick or tired, or both. which led me to stop the meds. (25mg am and 25-50mg pm) i weaned off over like 2 weeks (on my own cuz the neuro told me not to stop it and its all in my head.
i had to quit my job cuz of the panic attacks that just happen for no reason.
i still feel all the side effects even though i have been off topamax. hair loss, panic attacks, depression, "high" feeling all the time, cant hold a normal conversation. i have changed soooo dramatically from when i first went to the neuro and started this HORRIBLE DRUG. poor concentration, i don't feel like i want to be involved in anything- i just wanna lay on the couch with an ice pack on my head. i don't know what to do. my neuro doesn't know i stopped the drug and i was so mad at him for putting me on it that i didn't go to my last appt. now i have to wait until January to see him.
-- By purplerose81379 | Reply | (1) replies | Private Message me
November 6th
2008
12:14 AM
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?
-- By jloesing | Reply | (1) replies | Private Message me
November 5th
2008
11:30 PM
Nov 5 2008
I have been taking topamax since april of 2008, about 6 months now. Just recently I was increased from 50mg to 75mg for my migraines. I have short term memory loss, nausea, no appetite at all, shortness of breath, trouble sleeping, and all of a sudden terrible anxiety and panic attacks which started out of no where. I feel like my heart is beating out of my chest and I am going to die. It is horrible I cant stand it. I went to the ER and got the standard tests and they said my heart was fine and to follow up with my regular Doctor. No matter what I do I cant calm my self down it is just aweful. I am not sure I can live with these side effects, its too muc
November 4th
2008
12:18 PM
Topamax is off label for weight loss. I was put on it after gaining about 35lbs from Seroquel. It took the weight off like it was supposed to. My dose has recently been stepped down because I'm back at my normal weight of 135 (I'm 5'11").
When I first started taking Topamax diet soda and other sugary things tasted really strange, which my doctor says he's never experienced before. I also had a numbness and tingling in my face and hands for about an hour or so after taking the pill for a while.
One more thing that I noticed about this drug is that while on it my vision went from perfect to needing to be corrected by glasses. I have read a few things about vision problems associated with Topamax but I am not sure if it caused my nearsightedness or not.
Thanks for letting me share my thoughts.
M.
November 4th
2008
10:53 AM
I recently started taking topamax for migraines. After increasing my dose to 75 mg twice a day, I am almost migraine free. However, my hair is extremely oily and having to wash it with a clarifying shampoo twice a day. Nothing else has changed other than my this medication so I am assuming it is a side effect of the Topamax. Has anybody else experienced this?
-- By mreedy9 | Reply | (2) replies | Private Message me
October 27th
2008
3:13 PM
Hi all...I've been taking 25mg. of Topamax at night for 5 days now. Unlike most of you I have not experienced the tingling in the extremities or the weird taste in the mouth or even much tiredness at all other than what has happened as a result of my weird side effect. I was prescribed Topamax by my neurologist for my migraines. I've had them since I was 12 years old. I'm 49 years old. The got worse during peri-menopause which is kinda normal given the hormonal fluctuations, but was told by my neurologist that they would very likely subside significantly when I became menopausal. Well folks, I've been menopausal for 5 years and for the past 2 years my migraines have been the most horrific of my life. I have approx. 15 to 18 migraine days a month, some of the headaches lasting 3 bloody days. So it comes to this...Topamax. In the past I have suffered some pretty rare side effects from some very benign medications so I guess I shouldn't really be surprised that this is happening to me now. The first night I took it I slept like a baby. The second night I was slightly 'hyper' but managed to get to sleep. But for the past 3 nights it's been hell. When I lie down in bed, my body feels as though there are electric currents shooting through it and coming out my right leg. I have to move my right leg or go completely bonkers. Fortunately my daughter is away at university and so I can sleep in her room. So I lie there...on my left side...with my right leg hanging over the side of the bed swinging and swinging and swinging as hard as I can just so that I don't scream. It's awful. Last night was the worst. I saw dawn this morning. I just got off the phone with my pharmacist and he told me that I had described a classic case of RLS - Restless Leg Syndrome. And guess what? Topamax is used to trest RLS!! For bleep's sake! So nice people I am suffering a completely opposite side effect to the one that seems to be the most common one...tiredness. Has anyone else heard of this? Experienced this? It seems to all focus down to my right hip and leg. I have to move it vigourously or go nuts. I am so tired today but that's because I got like 3 hours sleep. I fell asleep from sheer exhaustion after my husband left for work at 7:30am.
A side note...I also take 75mg of Effexor for panic disorder and my neurologist told me that this is a very good mix of meds for migraine prevention. My top dosage for the Topamax will be 75mg taken at night.
I'd really appreciate any feedback on my side effect. Thanks in advance.
D.
-- By luna13darke | Reply | (3) replies | Private Message me
October 20th
2008
5:40 PM
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.
October 14th
2008
6:19 PM
This is my second time to use Topamax and I am having a different side affect now. I am getting very hot and breaking out in cold chills at the same time. The top of my head was so hot yesterday I had to wet it before I came to work. Has anyone been having problems like this? It says decreased sweating but mine is the opposite.I have the increased body temp. I thinkl.
-- By tammy001 | Reply | (2) replies | Private Message me
October 10th
2008
2:03 PM
I just got off topamax after being on 800 mg/day for over a year. Unlike most of you, I used it to treat seizures. Because of the side effects (slurred speech, bad memory, and NO sex drive) my doctor to switched me to Lamictal.
After just one week, my sex drive is back to normal, my memory is better, and I'm more confident in my speech.
-- By m4johnso | Reply | (4) replies | Private Message me
October 4th
2008
5:06 AM
I've been on topamax at 400mg 2x a day for about 8 years now. It is a great drug but it has HORRIBLE side effects! It ( along with lamictal) gives me WONDERFUL seizure control. And it is safe for pregnancy. BUT it has destroyed my memory. short term and long term I cant remember much of anything! The sexual side effects is just awful. It makes reaching an orgasm almost impossible! I am very scared that I may have full blown alzheimers by the time I am 30!
Has anyone gained they're memory back after stopping topamax?
-- By lolligirl | Reply | (5) replies | Private Message me
September 28th
2008
8:46 AM
Topamax makes things taste yucky!! things like soda, beer, etc. And I've typed a whole report before or listed something on ebay and only looked back later and called myself a STUPIDAS# because of all the misspelled words- should of used spell check- which if you take Topamax make sure your spellcheck is on! Don't know why but the med will slurr your speech and brain. I do still get the occasional migraines while taking it so I'll stop it, plus tired of the spelling probs I have while on it. But my doc says I should be persistent with it, just like everything else out there... there's always a price to pay! Other than that, no side effects like stomach pain or weight loss like I've heard in others. Oh but it will make you tired..especially at first..very tired!
-- By 502heather74 | Reply | (1) replies | Private Message me
September 26th
2008
2:00 AM
I was started on Topamax late 2007 after a week long migraine that did not respond to my usual migraine medication, Relpax 40mg and Xanax 1mg and I needed the second dose 2 hours later. I was given samples of Topamax 25 mg with a schedule to slowly increase the dose. The first 3 days I noticed an improvement in my migraine. By the 4th day, I started coughing. As I increased the dosage of Topamax, my coughing got worse and more frequently. I had to return to the doctor a week later for the cough. I thought I had been exposed to bronchitis because I had worked in the church nursery.
However, the doctor heard a wheeze with my cough and stated I had asthma. This came as quite a surprise because I have never had any lung problems or asthma problems and I am 52 years old. I was referred to a pulmonologist who put me on 2 inhalers (one steroid, one rescue inhaler, nebulizer treatments, chest x-ray, Oxygen to be used a night.
I was still having severe coughing spells every time I moved or tried to talk. I would have to run to the bathroom every time I started to cough because the coughing was so violent that I experienced severe urinary incontinence every time I coughed. I checked the internet and with my pharmacist, both stated that developing a cough was very common with Topamax. After learning this, I slowly reduced the Topamax until I could stop using it. As I was reducing the Topamax, my cough started to decrease. When I mentioned to my doctor about my problems with Topamax, he stated that Topamax did not have any respiratory side effects. I had a brochure from his office for Topamax that stated Topamax should be used with caution with people with lung or asthma problems.
I am now taking 800mg of Magnesium, CoEnzyme 100mg, and Vitamin B 2 100mg twice a day as a preventative. These supplements were prescribed by my neurologist. Since starting these supplements, my number of migraines has decreased.
Kay/redpoppies
September 23th
2008
2:46 PM
i have been on this for 5 weeks topamax and am now very depressed and anxious and having suicidal thoughts and bad upset belly and am now coming of it does anybody think that this is the cause
-- By pip200 | Reply | (1) replies | Private Message me
September 19th
2008
9:42 PM
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!
September 14th
2008
7:26 PM
I have been on Topamax for about a month now and going to give it a couple more to see if it is the med for me. I use it for migraines. I usually get at least 6 migraines a month - this month I got 4 and only one was really bad. I am very disappointed that beer no longer tastes good and am hoping that if this med does work to reduce or stop my migraines that my taste sense for at least beer will return. Also, I had an odd experience last night - I had 1 1/2 Mai Tai's last night - both of my arms went totally numb/tingly - not just my hands and not just a little tingly - totally scary numb/tingly to the point of considering an ER visit but I assumed the alcohol in the drink just exacerbated the side effect. I may become a non drinker if this med actually works. Guess you have to take the good with the bad! The cognitive stuff---that only lasted the first couple weeks thanks goodness for me. Not giving up yet!
-- By karlajo | Reply | (1) replies | Private Message me
September 14th
2008
12:28 PM
I had all of the above side effects when I was on this crap. Topamax is highly dangerous. I now have developed Narcolepsy, have problems with my joints, my memory has trouble here and there for simple things. I am only 29, and haven't taken this stuff for about 4 yrs. I have permanent problems now that I have to live with for the rest of my life. I didn't have a choice in the matter. I was ordered by the court to take a psychological evaluation. They asked some questions and determined that I was Bi polar. Topamax was the drug they put me on, and look where I'm at now. I also have Migraines, which I had way before this poison, and my advice to everyone is that this stuff is dangerous, don't take it!
-- By sufferinginhell | Reply | (1) replies | Private Message me
September 9th
2008
2:31 PM
I started right out 3 years ago on 100 mgs. and within a couple weeks migraines were virtually gone! I thought it was a miracle! Only slight side affects for a couple years and only an occasional migraine but not a three day long one. So, I figure, small price to pay for all that relief, right? Now, for the last 6 months or so I'm falling apart! My memory is just gone! Sometimes I'm afraid to leave my house because I'm afraid I'll forget my way back home! I can hardly concentrate long enough to put a meal together and it just took me 4 tries to remember how to spell concentrate! Thank Goodness for spellcheck! I've lost 42 lbs. that I can ill afford to lose and I now I have started to have these anxiety things that I've never had before. I feel scared and nervous and no idea why. I was on a couple of drugs for allergies, a couple for arthritis and a vitamin. I dropped everything except the Topamax and the DR. put me on a 1/2 mg. Zanax twice daily for anxiety which seems to do nothing except make me sleepy. Now it seems all these side affects have just bloomed and I have this constant ache over my right eye which isn't a migraine but never goes away. I'm afraid to just stop the topamax because of what I've read about suddenly stopping. Doctors are no help, they won't even admit there is a problem. They just wanted to check my thyroid.It was fine.
-- By southernred3 | Reply | (4) replies | Private Message me
September 6th
2008
3:21 PM
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.
-- By aleancol | Reply | (4) replies | Private Message me
November 3th
2009
12:53 AM
I've been on Topamax for about a month now for daily headaches/migraines with 50mg/day and will be moving up to 100mg/day in the next few weeks. So far I have noticed the tingly hands and the nausea but the worst is the dry lips and how every beverage tastes either flat or odd. The only thing that tastes good is water and I can't get enough of it because I am always thirsty. My urine has turned a bright yellow, which I noticed no one else has reported so I'm a little concerned about that. However the headaches and migraines due seem to be improving so I'm keeping my fingers crossed!
-- By dancingkris10 | Reply | (2) replies | Private Message me