Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-13-2007, 08:07 AM #11
InHisHands InHisHands is offline
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I could be wrong, but it doesn't seem to me that Dr. Hooshmand says NOT to use neurontin. There are side effects for many (weight gain is what I mainly hear about), but for those who tolerate it, don't grow to have an intolerance, etc it can be quite helpful. There are adverse side effects for many, and it can be quite an overused drug. But just because it is overused doesn't mean that some RSDers haven't found it doesn't work. Every RSDer has tried different medications used for RSD. Some find this works, some find that works... seems like a lot of individuals are different as far as what medications work for them. RSDers shouldn't rule out neurontin won't work if they haven't tried it or they are only on a low dose. Sometimes adjusting the doses can help.

I have found that it, like Lyrica, helps with burning pain/ allodynia. I am sure there are many here who can state the opposite, but it shouldn't be ruled out 100% for those with RSD. It has proven to help with neuropathic pain. The only side effects I had were when I first started it- I was dizzy. That was all, and I guess I have almost always have seen benefit with it. I would hate to see what would happen if I stopped the neurontin. I still am in severe pain daily, but it would be extremely severe without it. -Not to say that I don't have ups and downs with it-- I do, and it seems like it's always that way.

Thanks for posting that link, Molly! That is one I was going to pull out for this thread.

Sending soft hugs each way!
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Old 05-13-2007, 02:18 PM #12
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Oh dear, maybe that is why my P.D. won't prescribe more neurotin for me?? I am on Wellbutrin 75mg. (1 tab. once a day) xanax(0.5mg.) 3 times a day, Neurotin(100mg. in the afternoon, 200 mg. before bedtime0 percocett or vicidin ES(as needed) now, I don't think I want more of the neurotin! Love, Desi Oh, HAPPY MOTHER'S DAY!!
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Old 05-13-2007, 04:59 PM #13
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what a great thread ... i am a neurontin user for about 8 years and cannot go off it without a lot of pain so for me, it works. that being said,
i believe with rsd that there are no drugs that work for everyone, there are no real expert doctors and that each of us just needs to keep trying to get what helps us individually.
ha! people don't even agree on what rsd is! we are in a mess. aren't we?
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Old 05-13-2007, 05:24 PM #14
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Neurotten didnt work for me at all, but doesnt mean it wont work for others.

On the old boards we had a topic going about Topamax, and how it made everything taste like ***. Now the Topamax worked for me, but had some things I couldnt handle after a year of being on it.

Things Topamax did that was good,
1. stopped the burn
2. weightloss
3. no groggy feeling

Things it did bad,
1. bladder stones
2. hair falling out
3. made things taste bad

After causing the stones a couple of times, I had to stop the Topamax. I also didnt like the hair falling out, but could have lived with it.

Now neurontin, that drug was evil to me. I fell more times than I can count, and had the brain fog so bad I couldnt drive at all. Plus I would swell up like a balloon! The brain fog, and falling was the reason the doc stopped it, and then put me on the Topamax.

There is good and bad from every drug, it is a matter of can you handle it or not. Everyones just a little bit different.
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