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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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#1 | ||
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Member
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I first tried neurontin many years ago and it completely eradicated the pain. It didn't help with any other symptoms and didn't allow me use of my hand but it got rid of the pain. Indeed, I only took it once a day in the mornings after about six months and was able to quit it altogether after ten months or so. I was so frightened of it that I don't think I could have gotten back on it when my condition worsened except the doctor had me believoing gabapentin was different. It took days to work the second time but it seems to keep getting better after two years. I'm on 900mg + daily now.
I'm not sure what is meant by "wind up" but I do often get some precursors to the pain. The worse is when I've really overdone it badly I'll get pseudoparalysis. This is extremely disconcerting since it doesn't feel "real" but I can hardly even move my hand. It was even more disconcerting before I found out it was a common symptom of RSD. It's remarkable how much no one has told me. The other precursor is when my whole shoulder and hand feel like "dead meat". This isn't always followed by pain though. My pain tends to be brought on primarily by overuse but it doesn't kick in until 24 to 56 hours later. |
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#2 | ||
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Junior Member
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Quote:
Blown away by your erudition as usual, Mike. Hope all is well. So, Memantine, no good? Is it worth bringing up with my doctor at all, or is it simply a pass? Interesting papers on it... I've been on Mexilitine since January, alas with no benefits really. Looking for a new, or at least more efficacious, drug(s) at this point. I'm going up to UCSF in two weeks to see a doc who is into levorphanal. See what happens. -- Dennis |
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#3 | |||
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Wisest Elder Ever
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Many years ago Memantine was trialed in Europe for PN.
That was almost a decade ago. It did not pass FDA in US for this indication however. It was instead approved for Alzheimer's. I don't know why it failed for PN. We had several people very interested in it for PN, and this was back in 2000-2001. I will say I had some positive experience with dextromethorphan in Feb. I had a terrible bronchitis and was taking alot of cough syrup for it. My feet which should have flared with that illness did not hurt at all. So I added up my DM intake and it was 80mg/24 hr period! Now, my pain issues are not anywhere as intense as you all have here on RSD, but the NMDA blockade did work. And on the other hand, I am very very sensitive to MSG content of foods. So perhaps for me the NMDA receptors are a big factor. DM cannot be used by people taking SSRI or SSNI/SSRI drugs. That would be Cymbalta, Effexor, Prozac, Lexapro etc etc. It may cause serotonin syndrome in those cases. It should not be used with triptan migraine drugs either.
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#4 | ||
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Junior Member
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Yes, I think I experience "wind-up". I can typically sense when a flare-up is coming.
I take gabapentin, 1800 mg/day. This dosage generally keeps the pain bearable. A dose of 600 mg/day did nothing for me and 900-1200 mg/day is about 50% effective. The side effects suck, but the alternative is worse. |
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