Just wanted to follow up on this. I was discharged from Jefferson critical care two days ago and, for the first time in years, I feel hopeful about the future. Personally, whenever I'd read some message like this, of someone saying "I finally broke through!", or something similar, I'd think to myself "oh, they must have not had it so bad". Of course, there's absolutely no way to compare pain--aside from the constant hurting, its effect on us is rangingly unique. Myself, I had pretty much curled up into a hole that I saw pretty much no hope of getting out of. My life has held little joy for many long years. It has been nearly six years since I've had a single moment of not being in pain.
And the ketamine infusions did NOT change that. But they allowed me to feel hopeful and start to drastically change my approach to living with pain. I was at a very high, inebriated state for a little longer than four days. At first this didn't do all that much for me, the medicine DID improve my days, but so long as the pain was still there, I could not just be instantly ready to face my future. But, the medicine gave me a reprieve, partly on its own merits. Through a lot of interaction with my family (who I have not been close with), I summoned the determination to try to be just..able. I did not let the headaches limit me, just for a moment then and I started reading a book that I've been wanting to read for a long time. To my surprise, I could actually handle this, though I was very drunken. I figured that it was worth the try, though I very much feared the backlash of pain that I thought would ensue this effort and the potential eyestrain.
Honestly, it did wear me out and I did have worse pain later in the day. But I had a push of Toradol that got me through the worst of it and I tried again, starting to read and write and be as active as I could be in the hospital, taking strolls throughout the floor and chatting with the nurses. That too, took it's toll and I needed to nap at times after even relatively short excursions, but I persisted and I started to crack through that VERY hard shell that I had erected from the thought that I cannot do things because I am always in pain. I have no decision in the pain and in the hours or days that I may have trouble doing almost anything. But I HAVE decided that living my life, fully, is not contradicted by the presence of chronic pain.
If anyone has more specific questions about the experimental treatment (I was the second person to do this program at Jefferson), just reply or, better yet, send me an email, which you should be able to find in my profile (if not, it's korbnep AT gmail dot com). I wish you all the best :)
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin