[llrn7470]

In my neverending quest to find something to avoid getting the recommended SCS, I was wondering if anyone out there is being treated with Topamax. My RSD is isolated to left lower thigh and below and I am currently on Lyrica, but unsure if it is effective at all. I still use a TENS unit for work despite sustaining burns and bleeding blisters from it. Have been thinking that Topamax might be an option after speaking to some who take it for migraine, but wanted to throw it out to the most experienced group I know of-you!
Lori Lee

[SBOWLING]

I tried Topamax and it didn't work for me. My doctor said I acted like a dry drunk. I was very talkative and anxious when I took it. Neurotin works for me.
Good luck and I hope you find relief.
Take care,
Sherrie

[lostmary]

I tried it and I found it didn't do anything for me. Didn't even lose weight which can be one of the side effects. Gave it up.

Mary

[Breezy55]

Originally Posted by llrn7470

In my neverending quest to find something to avoid getting the recommended SCS, I was wondering if anyone out there is being treated with Topamax. My RSD is isolated to left lower thigh and below and I am currently on Lyrica, but unsure if it is effective at all. I still use a TENS unit for work despite sustaining burns and bleeding blisters from it. Have been thinking that Topamax might be an option after speaking to some who take it for migraine, but wanted to throw it out to the most experienced group I know of-you!
Lori Lee

From Breezy55: I have been taking Topamax for over 7 years now. However my Dr. had to start me on a low dose and slowly build up! Now I am taking 200mg.q night It really works once you get use to it. I almost gave up also. You just have to give it time. It really does work for RSD. I also did try Lyrica but I got so blotted and so many headachs. I had to take an r.x to get the water out of my body from the Lyrica! Give the Topmax a chance. Breezy55

[AintSoBad]

I take it only prn for "tremors" related to tbi.
It doesn't really do anything for my rsd. (It might be preventative for migraine, but I use zonegran for that). As for serious rsd pain, it's almost useless, imho.

Good Luck.

Pete
asb

[Sandel]

I am taking 50mg in the am and 50mg in the pm, it works well for me and also controlls the skull cramps I used to get almost daily.. and I lost 40 lbs in the past year that I have been off lyrica and on topomax.

[CRPSbe]

I take another anti-convulsant called Neurontin. Tried Lyrica a while ago, but that gave me a bad migraine as soon as it started to work. Also, I took it after I had just eaten (I was full) and I got this sensation in my stomach as if I hadn't eaten for days, I just had to eat (again) and could have eaten just about anything! No way! I can't gain weight with my bad knees. I went back to Neurontin a day later. Why change something that works?

Anti-convulsants help with the nerve pain related to RSD.

[AintSoBad]

I may be completely wrong!
(Imagine that?) Of course!

I've never taken topomax, (which btw, is now available, generic!), as a treatment unto itself. (I'm very conservative, and my doctor is very liberal, with prescriptions, i.e. I take less than is prescribed).
I depend mostly on methadone, for pain.
Then, diazepam.
Cymbalta.
and then
zonegran @ bedtime with some zanaflex.

Alongside my migraine meds.

So then, take this into consideration when "hearing" my advice.
Topomax may be more powerful than I ever thought...
I've never taken neurontin either.

Those are some of my limits!

Don't imply them onto yourself...

Pete
asb

(thanks to those who spoke up)!