[Sonny1]

RSD...I just read from 50-60 people it could be from Topamax... a side effect. The only one I seem to have other than my diet coke tasting badly! (some loss of appetite, not a lot though)

Itching is driving me bonkers! It is so weird. Some people say (researchers/doctors) that the Topamax is stored in fat cells and when the body gets warm (hot baths, showers, sun, near warm clothes drier etc.) somehow it triggers the nerves to send those silly mixed signals and starts the "itch" factor. Well once mine starts it does not stop! it will start on one arm, go to the other arm, then to one leg, move to the other leg etc...

I did notice sitting outside the other day for 10 minutes reading the newspaper, I got sunburned. Never felt a thing til much later when I had the chills and felt sick. This is so bizzare.

Just thought I would share my new found information!! Anybody else have this happen to them?

[Indea88]

I have hands and fingers that itch and itch and.....itch, with rashes and blisters, just my hands. I was told it is from RSD,drives me insane

[hannah1234]

I take topomax and I itch alot... my head itches, hands itch... but never put two and two together. It keeps my flares more level than when I am off of it so i feel like i have better good effects than bad...

I know that being on topomax you should stay out of the sun....


did you get off of it? and did it help? I hope you get some relief from something!

[Sonny1]

I did not get off of it (yet any ways) waiting to see doc again in couple weeks. But i did go back down in dose and itching calmed down a lot, but not gone. My body does still look like it was attacked by fleas or something!!! itching is way worse at night for some reason while I am trying to sleep. I feel the medication is helping, but it is hard to know for sure because I had started it while having nerve blocks...and now the burning is coming back more and i do not know if it is the reduced dose or the nerve blocks wearing off. I had 6 nerve blocks in a 4 week period and have not had any in a month....what a dilema!! I do know that I do not want any more blocks!! So over time that will be the real test!

Do you have any other problems with Topamax? I am on 100 mg in am and again in pm. I was having worse reaction when i went up to total of 300 mg a day....somedays i just take 100 (i forget the pm one a lot, which reminds me...gotta go take it now)

[hannah1234]

I take 60 cymbalta, and 25 topomax, 100 mg of tramadol up to 3 times a day, baclofen 20 up to 3 times a day... plus other crap probably. lol. I am so sick of being on medicine. That might be why because you are on a high dose.... the cymbalta will help you manage your rsd mentally ALOT I could NOT imagine life without cymbalta. What is his reasoning to put you on the topomax... OHHHHH do you take brand name or generic? Because I had HORRIBLE side effects to the generic but the brand name I am fine. The generic one gave me horrific headaches body sweats skin sensitivity probably more but its been months since i have taken the generic. Try the brand name it is pricier but i noticed a day and night difference!!!! Hope that might help!

[daylilyfan]

Hannah, I am surprised topamax does anything for you at only 25 mg., and that you could tell a difference between generic and brand name at so small a dose.

Sonny, I have never seen itching noted on this board as a side effect of topamax. I have had the tingly itchy won't stop places when on topamax or not on it. I think it is the nerves acting up. About all you could do is ask the doc to taper off of it, see what happens.

If you actually have what looks like a rash, try soaking in a tepid bath with Aveno powder. Buy the generic, it is less expensive. It is finely ground oatmeal.

My other thought is, have you been on any antibiotics lately? If so, you could have a yeast growth on your skin surface. That itches like crazy.

Edited to say after posting I did a google search for topamax and itch and did come up with a lot of hits! Huh! I have been on and off this med for years and did not know of this side effect. I know it makes me have tingling, but did not know of itching.