Topamax and neuro

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 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

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 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.

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

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

hi started my topamax 25 mg at bedtime i take it for migranes been top for 3 weeks now i have noticed side effects however iam taking other meds and im having trouble distinguishing which side effect goes with what lol ..e.g.. paxil for anxiety , panic attacks and HYDROCHLOROTHIAZIDE for borderline blood pressure , i have experienced the tingling in the hands and the feet ..lack of appt,i wouldn't say my desire for sex is gone but im experiencing vaginal dryness and itching and numbness as well as problems climaxing sorry tmi lol ... thought it was a yeast infection but its kinda different? any girls ever exp that before while on top? im getting scared now reading the post about loss of hair im already very thin and have little hair as it is any help or suggestions would be great thx ...

I started Topamax October 12 my Neuro said start at 25 mg and work up to 50mg in the morning and 50 mg at night. The first week I was tired like most people have mentioned. Almost instantly Diet Coke tasted terrible. I was a little dizzy and light headed. DC still taste flat but the other symptoms have gone away. I have never experienced the tingle or weight loss. I am on a low does. No stomach problems for me. One thing is my cramps this month were 2x worse than normal . I am 45 and on Topamax for migraines mostly I think hormonal. I am going to give this a fair shot. I really have not felt more energy. I really wish it would help in that way. I am also taking wellbutrin and prozac for depression that runs in my family all the way from my Great Great Grandmother. I too have have a mild headache off and on when I would normally have a migraine and a advil took it away. I had to take an imitrex last night, and am hoping that is the end of this hormonal headache for the month!

hey me again. I forgot to mention why I am on topamax. I have a wierd face twitch, used to be a deliberate looking wink which now involves an entire head jerk to theleft and an inability to open my eyes, that my neuro thinks my be the result of focal seizures, also I have regular migraines and daily, literally daily headaches. Because of some other more personal issues and symptoms I feel like I might have Tourret's instead. Last week I had an EEG done. My face was moving so much it was unreadable. I had a second one done. I fell asleep and the twitch slowed down, then I had an MRI done. I find out the results of it all in two days. Will topamax help if it is Tourret's? Does any of this sound familiar? Thanks

I'm starting my fourth week on Topamax. I'm not sure if I really need to be on it though. My doctor sent me to a neuro for an EMG because I have bulging discs in my spine. Well, the neuro seems to think I have migraines and put me on Topamax and he added "this'll really make you lose weight". Well, I don't think I've ever had a migraine...just sinus headaches. I'm supposed to start 100mg tonight but I'm afraid to keep taking it. I keep getting double vision and tingling in my feet alot. I don't feel like myself and I'm not sure if there have been studies of the effects of this drug long term??

I've been on Topomax for about 3-4 months now. I've had memory loss, slurred speech, decreased concentration (I have to re-read something several times to understand it) tingling in the hands and feet, depression, increased anger, loss of appetite, weight loss. I'm now at the point where I have a rash on my leg, severe nausea, and abnormal bleeding. I going to follow up with my neuro and PCP to see what's going on so we'll see. My migraines have decreased from 3-4 a week to maybe 1 a week, so it has been worth it so far so I can function for work and for my kids as a single mother. I've suffered from migraines for about 10 years and can't take the pain no more!!! If anyone has experienced the nausea, rashes or bleeding please reply.

tightening at the base of the head and neck. Sore neck

I started taking 25mgs Topamax nightly, a fortnight ago, but I found my chest was tight upon laying down in bed.

On the eighth day, I started the Topamax 25mgs in the morning.I had trouble breathing most of the day. It felt like everything was squashed up in my chest.

I have since taken myself off it until I get to see my neuro next month. Made me feel more than a little scared to continue.

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.

Hi Everyone,
I have been taking Topamax 25 mg for 1 week. I can't stand it. Today I am to up my dosage to 50 mg.I am not sure if I want to do that. The side effects suck.. I think I would rather just deal with my migraines, at least I know how to do that since I have had them for over 25 years. I have tried everything and nothing has worked so the Dr. and I thought we would give this a try.
I am trying to keep my place of employment happy with trying to cut down on the migraines but nothing works.
Most days I just want to give up.
Hopefully we will be able to figure something out.

I can't stand the pickhands and feet, the stumbling like I am drunk( and I dont' drink) nothing tastes right anymore, I have the shakes and I ache.
And all it does is makes me sleepy and like I am in another world.
I went to work today and made it half an hour before I came home because I stumbled and almost fell over. And when the boss talked to me it was like I wasn't there. So I came home. I don't know but I don't like it at all.

Im 39 years old I have been on topamax for 3 months now on 50 mg a day first and now for the past month it was increaded to 75 mg a day. I have begun to have panic attacks/ nightmares. I also suffers from memory loss and inability form my words ( I guess thats the best way to describe it) my neuro gave me topomax for what he calls complicated migraines where my left sarm and leg became numg along with headaches and neck pain. The pain has decreased although the occurrrences have not subsided and Im not sure if Im going to saty on the Topomax. I have lost 8 pounds. The panic attacks and anxiety and debilitating.

I went to a neuro specialist for migraines today and within two minutes he was handing me a sample of Topamx -- without taking any history or listening to what I was saying. And he is a prominent "leader" in his field in Newport Beach, California. I can't believe it. He wanted to hospitalize me for three days and start me on Topamax tonight. I asked him the side effects and he told me only weight loss (I'm 5'6, 115 pounds!), fatigue (I have a weakened immune system already) and kidney stones (I'm a Libra -- and while that sounds funny, that sign rules the kidneys!). He also said I might search for words and chose the wrong ones. Well, I'm a published journalist. Great! What an Idiot. I asked him how long I would have to take it and he said about two years! My husband threw out the pills when I came home and told him the story... and now reading your postings I want to warn those of you our there to be sure that you really need this medication if you are taking it for only for migraines. I'd rather spend a day sick in bed a few days a week that have all of these horrific symptoms appear. Thanks for letting me share and good heath wishes to all of us.

I have been having temporal lobe partial complex seizures since I was 5. Was put on Topamax as solo therapy for use also for migraines in 1999. Controlled both well. Gradually I developed severe depression. It was so subtle I was not aware it was my medicine. I did tell my neuro. and he added different antidepressents to the regime to no avail. My life continued to deteriorate. I also had the tingling fingers, toes, twitches on my face, confusion, could not remember anything. I finally became suicidal and a regular MD decided told me to switch neuro and get off the meds in 2005. 1 month after coming off the med I was my old self again. My memory everything came back. I felt like i had lost all those years.