Topomax: Having Terrible side effects ...please help

[JaclynDT]

About a year ago I went to a neurologist for migraines... He put me on Topomax [despite knowing that I have had several kidney stones in the past- which I found out that this medication can cause] anyways, I immediately started having a reaction to this medication... a burning sensation all over my scalp, face and neck. I called my Dr. and he said I may just be my body trying to adjust to the medication.... so I stayed on it 3 weeks and then couldn't take it anymore. I abruptly stopped taking it [which I NOW know is not a good thing to do- too little too late] and almost a year later I am STILL having the side effects... the burning / tingling sensation all over my head. The only way I can really describe the way this feels is imagine having a sunburn on the top of your head and then it being pricked with pins and needles. Yeah, everyday... it's terrible. I have been to several doctors and they do not know whats going on. They say that cant imagine it being from the medication b/c it should not still be making me feel this way since I have been off of it so long. BUT I never in my life experienced these sensations until starting this medication. The weirdest part about this is that I no longer have migraines... its like the medication altered my headaches, but I can assure you that I would take my old migraines back ANY DAY of the week, b/c what I experience now is much much worse.
Please has anyone experienced anything remotely close to this? The fact that none of the drs. that I've gone to have ever heard of this is really making me feel crazy...
I feel hopeless...
Any comments/suggestions are greatly appreciated...

[JaclynDT]

Yeah its weird b/c I have heard a lot of people complain about the burning sensation but they would say it was in their hands/feet or legs... I've never heard of anyone say it was in their head... like what I am experiencing.
To say that is is a coincidence is just a major stretch for me... I have never ever felt anything like it until that medication.
My psychiatrist thinks that the feeling I have is from stress/anxiety... which its true it does get worse when I am stressed, but I know there is NO way that this is happening on a daily basis from the min. I wake up till the min. I go to bed b/c of "stress"...

Also, like I said I dont get normal "headaches" anymore, and for instance like if I drink on a friday night, my tingling sensation will be really bad when I wake up sat. like if you wake up and have a headache b/c of a hangover. instead my headache is a burning/tingling pain... its very odd.

It's just getting really discouraging to not be able to find the answer to this.

[medchick0523]

Welcome to the "I Hate Topamax" fan club. I never had the burning you've mentioned, but I was put on it twice, wasn't any better the second time, and the second time I decided I'd had enough and went cold turkey-- from 300 mg/day. Not the brightest thing I've ever done. Anyways, getting to the point. Is there any possibility the occurrence of the burning sensation beginning when you started the Topamax is a coincidence? That's the only thing I can think of... sorry I don't have more to offer. I just can't imagine you'd still be having issues from the Topamax, though obviously you are. Don't stop until you get an answer.

Although I did find a website, patient reviews, and one individual also lists a feeling of burning, though in the hands and feet, from the medication, and the sensation continued after discontinuation.

I really hope you find out something soon!