Hello, I was curious if anyone has ever used Topomax to treat their RSD pain and how it helped? Many thanks!

Hi there...I have full-body, systemic RSD and was put on Topomax after being on Neurontin and Lyrica...Both of those made me very sick and nauseated and I also gained weight on Lyrica...I have been on Topomax 100mg for 1.5 years with time off for a pregnancy. I started at 25mg and increased weekly to 100mg. Topomax has been wonderful for me. I have noticed a significant decrease in nerve pain and burning than what I would normally be dealing with.

I will be honest with you.There are a lot of side effects that people complain about like: blurred vission, loss of appetite, weight loss, confusion, irritability, and nervousness. A couple of these affected me at first, but as my body adjusted, they went away and I don't have any anymore.

I hope this helps...Please feel free to ask me any questions.

,
Heather

KateLynne, I was put on Topamax last year and after 10 days of side effects so bad that they thought I had RA I demanded to be taken off of it. The RA syptoms went away. Couldn't tale Lyrica either. I was on Neurontin and doing fine with it but they wanted to use these as they have less side effects. Not in my case though, I'll keep the Neurontin. Give it a try though as others do much better on it than on Neurontin. Everybody's system is different what works for one won't always work for another but if you don't try you'll never know. Good Luck to you Marilyn

i did beautifully on topomax for over 2 years, but had a bad reaction at the last increase so i can't take it anymore.....i wish i could!....nothing helped as much.....'nothing' includes zonegran, neurontin, gabatril, lyrica, and misc others.

just for fun: one of the longest threads ever on the old rsd forum had to do with topomax and the odd side effect of altered taste....several people had peculiar taste effects with a few items (especially diet soda) but nothing serious enough to warrant switching drugs.....the thread got off topic somewhere along the way and became a cyber-vacation to hawaii.

hope the topomax works well for u....good luck!

Hey CoachV,
*LOL* Boy do I remember that thread. It was one of the best thread ever eh??? I didn't know that you had a bad reaction to Topomax. I am sorry to hear that, what are you taking now, if I may ask?? If you don't want to say that is kewl also.

I tried Topomax also & I lost weight which I need to do still, & it helped immensely with the burning pain. BUT I had one of the most strange side effects. One that isn't even listed because there have only been one or two people who reacted the way I did. I ended up manic from it. I am not bi-polar, a mental illness, but certain drugs tend to throw me into a manic episode much like what happens when one is bi-polar. They are fun to begin with, but soon turn ugly. Ones mood is very altered negatively. But like I said that has happened in only one to two cases, one of them being mine. I would try it if I were you to see how well it works for you.

I take Neurontin with little side effects, & Lyrica also, with the sleepy side effect & weight gain having been the worst side effects.

Good luck,
DebbyV

I dug out my Topamax when you wrote about it and I had wrote on the bottle changed mood. I write on some of my bottles what the side effects are for me.
Apparently I had some of the same side effects as Debby.

I did read up on the side effects and mood change was one of them along with a lot more.

It might not react that way to you though. I have trouble with most meds.
It's just one of those things where you have to try it and see how it does for you. I hope it works good and no side effects.

Ada

Hi I think I will see about trying topomax when I go off the lyrica soon.. I had forgotten this drug option, and I remember that long thread and yes *sigh* that was a great road trip.. Almost time for another one methinks..

hugs,
sandra