I agree with the comments that have been posted here: Neurontin helps some people more than others and, more importantly, helps in some ways more than others. Does anyone else experience the "wind-up" sensations that I addressed in the initial posting?

mrsD, as for as the value of NDMA antagonists, I too have posted a lot on that over the years. I'm currently on 30 mg. of Memantine a day in an attempt to slow down the loss of grey matter in the brain that is incident to chronic pain, and it has done nothing for my CRPS, despite at least one published case report showing that six patients with CRPS had statistically significant results in pain reduction from the same dose of Memantine. See, "Memantine Treatment of Complex Regional Pain Syndrome: A Preliminary Report of Six Cases," Nektarios Sinis at al, Clin J Pain, 2007, Vol. 23, No. 3, March/April 07 237-243, a copy of which is attached. But I wasn't surprised, having been personally advised by a top CRPS researcher in 2003 that doses of Memantine that people were talking about were too low to make a difference in cases of CRPS, and that ketamine was where the action was. Unfortunately, due to a pre-existing history of glaucoma, I was disqualified from the high dose German ketamine trials later that year, with airline tickets already in hand.

However, even the high dose ketamine trials could report only generally favorable but mixed reports on improvement in quality of life six months out, while the same authors' study of "low dose" ketamine infusions (increasing over 10 days to 500 mg/day) showed no significant benefit in terms of pain relief even at the end of the 10 day infusions. Compare, "Efficacy of Ketamine in Anesthetic Dosage for the Treatment of Refractory Complex Regional Pain Syndrome: An Open-Label Phase II Study," Kiefer RT, Rohr P, Ploppa A, et al, Pain Med., 2008 Feb 5, free full text at http://www.rsds.org/2/library/articl...a_Dietrich.pdf, with, "A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients," Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008; 9(1):44-54, free full text at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf. And I suppose that knowing I couldn't get into a high dose ketamine treatment was what sent me off in search of RUL ECT as a treatment for CRPS, only to later discover find out that due to decades old restrictions, it was illegal in California, outside an IRB supervised clinical trial. (For anyone interested in my efforts in that regard, check out the thread at http://neurotalk.psychcentral.com/thread42529.html Unfortunately, the link to my review article on the JPPM site is no longer active, but it's available on the RSDSA server at http://www.rsds.org/2/library/articl...haels_CRPS.pdf)

All that said, I greatly appreciate the information concerning diet and NDMA. Thank you!

Mike

Attached Files

Memantine Treatment of Complex Regional Pain Syndrome - Sinis et al - Clinical Journal of Pain 2.pdf (149.4 KB, 619 views)

Hi Mike!

Very interesting stuff. I believe I experience what your calling wind up. It seems I can feel/tell the storm of pain is approaching, and sometimes by the way it feels I can tell if it is gonna be a F5 opposed to a F1 type of pain.

I recently have been put back on neurontin, and the last week or so I have been awakened by some pretty mean nightmares. Yesterdays nightmare had me feeling like my life had changed for the worse all day, even though I knew it was a nightmare and not real, it traumatized me in some weird way.

So the next time I get to see the pain doc, im gonna tell him I want off the nightmare train. I am getting to the point where I would rather suffer than have all these weird side effects. Just using pain meds, and my instinct on what to do or not do activity wise to keep my pain in the "I can handle it arena".

Pain can get to runaway levels, but with moderation in activity, and a few pain meds, I can get it down a couple of notches into a level that I can at least cope.

Hi Mike,

When my RSD first spread to my arm, the symptoms came on, full blown, straight away. I immediately had the pain after I fell and knocked my arm and within a few hours, my arm had swelt up to twice the normal size.

I now feel that I have the "wind up" that you mentioned, although I have pain with mine. I can usually tell a few days before if my arm is going to start and go into a flare as it will feel "strange" and hurt and discolour more than usual.

It is strange with me as my leg is in a constant flare ... the pain is always a 8 and a half on the pain scale. With my arm though, it will get somewhat better and then start getting worse and I experience the "wind up" that you mentioned.

Thank you for sharing all of this with us - it is really interesting. I had never heard of the "wind up" before you posted this so have learnt quite a lot!

Take care and I hope you are doing OK!

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.

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

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.

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.