United Brachial Plexus Network, Inc.

I'm glad to hear that someone is benefiting from the Topomax. I have had blinding migranes daily for months. I have tried every other class of medication (triptans, klanopin, blood pressure meds, anxiety pills), with no relief. I was hesistant to try the topamax for fear of the side effects. I just started 25mg yesterday, working up to 100 eventually. Hopefully the benefits will outweigh the risks. Is anyone else benefiting from the meds? Or do you know of anything else that works for severe migranes?

your Dr. put you on this for a eating disorder??? is nhe NUTZ??? Ive had a eating disorder since I was 14 years old. and Im on Topamax and I LOVE IT I can EAT what ver I want ( I DONT) I weigh 125 Im 5'4" But Im a alcoholic and drink so many beers in a day that could kill a horse!!! (I know I shouldn't mix my meds with the alchol but, I do, so enough about that)Anyways. I think Topomax IS WONDERFUL!!! STOP beating it to death!!!

THIS IS NOT TRUE!!!!!!!!!!!!!!!! where did you get this info??? your underwear drawer??? come on!!!!

stop eating!!!

I started topomax 1 week ago at 25mgs every other day and I have to say I feel terrible. I have been in bed ever since with chronic nausea and almost continuous migraines. This is pretty much the drug of last resort for me as I have tried elavil, verapamil, valproic acid, propranolol and remeron...all with horrible side effects. I am determined to stick with this. Has anyone else had this and if so how long does it last.
P.S. My neurologist said the key is to wean it in very slowly. I am taking 25mgs every other day for two weeks then 25mgs daily then increase in two weekly intervals. Maybe that way the side effects won't be as bad?

I must be made of stone, I have been taking this med for 3 weeks now. The first week I started at 25 mg twice a day then the second week I went up to 50 mg twice a day and then the third week it was 75 mg twice a day and next week it'll go up to 100 mg twice a day and I have to say it has had absolutely no effect on me. Now i'm thinking what's really wrong with me? This was supposed to be the drug of all drugs. The drug to try when all drugs fail. By the way my doc put me on this med because I'm bipolar. I realize these meds do take some time to kick in, so I'll just sit back and continue to wait and see, and for the rest of you who are having horrible side effects I do hope that they where off soon. I wish you all well on your journeys to better health....

I just started Topomax 15 days ago for my migraines and felt the effects right away. first thing was not being to able to taste the carbonation in my Dr. Pepper. Now that sucks. It has helped with my migraines more than I can describe. I can function as a human being now. It has had a few side effects such as eye redness and dryness and a little mental slownes, but this I can live with to be free of the migraines.

I have been on Topomax (75mg) for one year - treatment of migraines. I have recently noticed my hair to be much thinner - could not understand why. Just today, I decided to go on the Web to see if there was any correlation between taking Topomax and hairloss. In going back and reading a number of messages posted, I did come across a few indidividuals who had experienced that same side effect. Any one else having the same side effect? Did you end up going off Topomax and did your hair rejuvinate? Thanks

I wanted to reply to Mike's question as I have not seen it addressed either. I was just put on Topomax 2 days ago for alcohol cravings. I'm on 50 mgs. a day and after 7 days am supposed to double that. Immediately I noticed my soda tasted awful; all I can drink is water and milk. Food has pretty much lost it's appeal until I am so hungry and weak that I have to eat something. I took my son shopping last night and my face was red and felt very hot, but I have been alternately hot and cold. AND VERY TIRED. I slept all day long today. However, on the bright side, since I've been nauseaus and nothing really tastes good, I have not craved alcohol! After reading many of these posts, though, I am not feeling very optimistic.

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Optimsim beats pessimism any day ... and I guess I should be happy that I started Topomax before I decided I wanted information about it... as it has really helped me and without too many side effects...
so take heart
As several others whose posts I have read, I found these boards in a search for information on Topomax... actually it began with a search for information on Tegretol. I do not know if I belong here or not -- before someone becomes upset with me for intruding. A couple of years ago I was diagnosed with epilepsy, cause unknown, duration unknown.
I have an absurd sort of epilepsy, in that it is not the highly visible sort and only occurs when I am asleep, making it difficult at times to know whether or not I have had a seizure. The neurologists dealing with me are not sure if it may have been caused by injury and by what sort... life can be confusing indeed.
Originally I was put on Tegretol,but in January of this year (2003)when that was not eliminating the seizures, the neurologist decided to increase the dosage. When I asked him about my migraines (until I noticed the posters in his waiting room -- needed something to read while I waited -- it never occurred to me to ask him about them.) He immediately tore up the prescription and began to write out one for Topomax, at the same time telling me that I might want to consider the side effect, weight loss. Being overweight, I thought about it for a second and said I thought I could live with it...
Topomax apparently deals not only with migraine but with seizures -- my miracle drug it would seem.
However, I began at 25 mg in the evening for two weeks, then increased to 50 mg for two weeks, and so on until I reached 200 mg, then began the morning dosages at 25 mg and increased at the same rate until I was taking 200 mg in the morning as well.
He told me that if I noticed any difficulty with the medication, I was to slow down the dosage increments and stay at the previous dosage until I was comfortable with it --- whatever that meant.
He told me about no other side effects and nor did my pharmacist who is notorious for listing all side effects in a leaflet and then sitting down and chatting about new meds with clients to be sure that each new med is understood totally.
Food lost its appeal within three days at the 25 mg once a day dosage... I was simply not interested in meals... taste didn't matter because I didn't want to eat anyway.
As for alcohol, my sister-in-law, who was prescribed Topomax for seizures related to head injuries and a broken back following a drastic accident, was warned that there would be serious side effects if she were to mix alcohol and Topomax -- one glass of wine at dinner and Topomax was a really vile combination she tells me. (In case anyone is wondering about the warning, apparently it is one you don't want to try for yourself)
I did not not know about the hair loss problem mentioned here, but in recent weeks I find that my hair is extremely dry and hard to deal with. Related? I am not sure.
I read on these boards that some patients find nausea accompanies the use of Topomax. I can't say if it does or doesn't as I cannot say whether or not the occasional bouts of nausea are related to Topomax use or to other health problems that are being dealt with... or to other medications. My own physician has prescribed SERC to deal with the nausea. I do not have to take it all the time but those times when it does occur, it is most helpful. I had been using an over the counter product for motion sickness but he did not think this was really a good idea.
My neurologist did mention that pressure behind the eyes is sometimes associated with Topomax after I had been using the med for a couple of months, but it has not been a problem -- odd that it was not mentioned up front???
Other side effects mentioned here have not been mentioned by either of my neurologists, both of whom approve totally of the use of Topomax for the headaches and the seizures. (The other neurologist is dealing with a wretched condition known as myosthenia gravis -- not responsible for spelling)
Since January I have lost enough weight that I gone from size 15-16 to size 10, so in my case the weight loss side effect has been good... in my teens I was anorexic but later reversed the process until now ...
my one concern about the weight loss side effect is wondering if it stops...
I have been without migraine, totally debilitating migraines that do not give any warning, since mid-January thanks to Topomax, and do not like to think of a return to that...
the only side effect that really is insurmountable from my point of view would be to continually lose weight...
it has to stop some time -- doesn't it???

I have found that foods change taste with Topomax but was not sure if that were the Topomax or the Tegretol or perhaps another med that I have to take...
I also find that I am CONSTANTLY thirsty and that is only since starting the Topomax (have also been told by other users that it is a cause of kidney stones and to drink lots of water while taking it... not sure if this is accurate, but always thirsty so drink lots of water anyway)...
I have not experienced depression using it...
have not found that it slowed down my thinking although sometimes I am unable to think of the exact word I want... of course that was a problem before Topomax too...
So far I have found more benefits that harm...
but I think from experience that I would be more inclined to start using it more slowly and cautiously...
Always take it with meals by the way... I know, hard to do when you do not feel like eating...
I have found that about 25 cents worth of cashews is enough to keep me going for the day... I eat a single serving of yoghurt in the morning with my meds and then have the handful of cashews that I get from a dispenser that raises funds for Child Find... hence the 25 cent measurement... it is a good handful... then in the evening for dinner I have some cashews again (something in the cashews seems to work with my system to really beat any nausea factor with the meds I am on) and then perhaps a bowl of soup and a light meal and I am fine... over time I have come to enjoy a bowl of home made soup at a restaurant near work...
something light and with real taste... and I notice the flavours... so the taste killing part must end...
could it be the carbonation and the artificial flavours in the sodas????
especially if the sodas are the kind made to be sugar-free???
don't give up until you are sure...