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 02-27-2012, 09:28 PM #31
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Originally Posted by CRPSjames View Post
fmichael,

I am new here and by no means an expert on meds. I am, nonetheless, very concerned about the number of meds you are on. Please excuse me If I am being intrusive but just coming off a similarly long laundry list of meds I cannot express how negatively they effected me mentally and cognitively. The meds had slowly been added over the years, predominantly by a psychiatrist. I now wish that I had listened to the advice of my pain management doctor to withdraw and then revisit what I really needed.

The only thing that finally forced me to come off meds was beginning tDCS. I wanted to know if the treatment could take the place of meds. The bonus was the rapid rebound of the cognitive issues that had dogged me.

Additionally the suggestion of my pain management doctor that narcotics would, in the long run, only serve to increase my neuropathic pain, in addition to causing other nasty long term issues, made me rethink things.

I see from other posts that you are considering tDCS. Maybe, in conjunction with tDCS, an outside opinion about your med list could be helpful.

Just a thought.
Best to you with tDCS.
Appreciate it. I'm on more drugs - for unrelated conditions - than any of you folks know. But that's why I have a good internist and have complete metabolite panels run every six weeks, to say nothing of my semi-annual workup by a hematologist for MGUS-[lambda light chains].

And trust me, I've thrown drown the red flags on more meds within 48 hours of initiation than I would care to remember. So yeah, I take this stuff seriously. The good news is that, courtesy genetics, I don't develop a tolerance to opioids, so have been on the same dose of Oxycontin/oxcycodone for something like 7 years.

And that's why I think the two week outpatient ketamine protocol @ 200 mg/day is great. It's got a good track record of putting people with the most refractory conditions into a 6 - 8 week remission, which is just enough time to ween them off most of the medications their on for pain, and ramp them up on "low-dose" on a maintenance therapy of naltrexone and memantine. Using tDCS perhaps to restore years of cortical damages secondary to the CRPS. (Although I was once ticketed to go to Germany for a ketamine coma, a preexisting Dx of well-controlled open angle glaucoma was disqualifying, and insurance doesn't cover the added expense of using the current therapy protocol outside of an "infusion center," in order to accommodate the presence of a mannitol drip and an ophthalmology resident, periodically taking my eye pressures.) That, and years ago I was lined up to do a round of 8 -12 applications of RUL-ECT before my (relatively young) doctors and I found out about a crazy law, passed by initiative in 1976 following the release of One Flew Over the Cuckoo's Nest a year earlier - well before RUL was where it is today - which prevented me from doing so; and it's impracticable for me to leave California for the procedure because the use of general anesthesia mandates that all out-patients "be picked up by someone you know."

Bottom line: I've explored all sorts of options, and will continue to do so.

Mike


PS I live with the words of my kindly old neurologist, "I may not be able to take away your pain, but I can save your liver."
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Old 02-27-2012, 10:12 PM #32
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PS I live with the words of my kindly old neurologist, "I may not be able to take away your pain, but I can save your liver."
Whimsical....and provocative; I like it!
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Old 02-28-2012, 06:08 AM #33
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Hi. Sorry to be late on this, but I've been given something that's nothing short of awesome for flairs.

In addition to the backdrop of Oxycontin/oxycodone, Xanax and Baclofen, I've been using - as discussed here months ago - Neudexta, a combination of 20 mg of dextromethorphan HBr (DM) and 10 mg of quinidine sulfate. DM - widely used as an over the counter cough suppressant - just happens to be a powerful NDMA-receptor antagonist, second only the ketamine. Its downside in pain relief is that it's quickly metabolized by the liver. But, it turns out that quinidine - widely used in substantially larger doses years ago as a tricyclicate antidepressant before it was found to cause cardiac arrhythmia in too many people - completely blocks the metabolism of DM, for 4 - 6 hours at a time. To which my doctor adds a prescription for compounded DM in capsules, 30 mg each. (While Neudexta is covered by my insurance, DM is not, but its pretty cheap: 60 capsules costs $56.)

So, with the worst of flairs, as I was having a few minutes ago, I just take the foregoing - including 90 mg of DM - and I'm right as rain, and heading out to see a movie in few minutes!

One note of caution: even with only 10 mg of quinidine, Neudexta is contraindicated for anyone throwing a "long Q - T interval" on their EKG. So "pre-clearance" from your internist is a good idea.

I hope this is useful.

Mike
Mike.

Thanks for the information on the Neudexta. I am feeling much better except for the pain in my foot. What started me thinking it was a serious flare which I really haven't had since pre-ketamine Jan2009 was the pain in my foot. My RSD is upper extremety right side. I have not had spread like this and it does concern me. It is a typical RSD type pain, burning, speads at times up my angle and one night up to my knee. I thought it might be my back, I do have some back issues but have responded to epidurals wonderfully and haven't had to have one it will be 2 years in April.

To sum up my PM Doctor thinks it's was a flare from Stress. My husband and I are caring for his terminally ill Mom. Stage 4 lung cancer. She wants to be home and we are trying to keep her there. We have help from Hospice but they are not there all the time and we live an hour plus from her. So it's a lot of running, coordinating with nurses, aids blah, blah, blah...One of us are there everyday, and his cousin has just commited to 1 day on the weekend. But we work, I only work PT, we have 2 children older, 21 and 17, but still live at home and it's just constant.

Thanks again everyone.

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Old 03-02-2012, 03:33 PM #34
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Book Namenda (memantine) and Nuedexta (dextromethorphan/quinidine)

Okay. I've got the answer. When my psychiatrist told me that Nuedexta should potentiate Namenda as well as dextromethorphan (DM), he wasn't speaking of quinidine blocking the metabolism of Namenda at all, but rather that DM and Nasmenda should compliment each other at the receptor level.

And here's what the FDA Approved Prescribing Information for Namenda has to say on the topic of Namenda – Memantine Interaction:
NMDA receptor antagonists (memantine):A drug interaction study was conducted between a higher combination dose of dextromethorphan/quinidine (dextromethorphan hydrobromide 30 mg/quinidine sulfate 30 mg) and memantine 20 mg/day to investigate the pharmacokinetic and pharmacodynamic interactions in 52 healthy subjects. Both dextromethorphan and memantine are antagonists of the N-methyl-D-aspartate (NMDA) receptor which could theoretically result in an additive effect at NMDA receptors and potentially an increased incidence of adverse events. There was no significant difference in the plasma concentrations of dextromethorphan and dextrorphan before and after the administration of memantine. Plasma concentrations of quinidine increased 20-30% when memantine was added to dextromethorphan hydrobromide 30mg/quinidine sulfate 30mg. [Emphasis added.]
The moral of the story, once again, is that even with what remains, at 10 mg, a very low dose of quinidine - even when increased 20-30% - anyone contemplating the use of Niedexta, should/must get pre-clearance from their internist to rule out the possibility of a "long Q - T interval" on the EKG.

I hope this is helpful.

Mike
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Last edited by fmichael; 03-02-2012 at 03:54 PM. Reason: correcting link
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Old 03-26-2012, 08:50 AM #35
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Trying to find how to contact someone in support group in Los Angeles. Any active groups there and anyone to talk to?
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