Not to hijack this thread but I had a quick question:

Hi Gunny, I had a pretty trippy infusion last time. I'm wondering what dose you're getting.

I've been getting 500 mg over three to four hours and I'm usually knocked completely out. Not so this time at all. I was only quiet for about 20 minutes out of the four hours. I ran my sister ragged trying to keep me off negative thoughts of my ex husband getting married in a couple of weeks.

I'm always curious about the different protocols people are on and if they're tailored to the specific individual or just standard for that Dr/Clinic/Practice.

Denise

To stay on topic - for your first question: my pain went almost completely away for about five weeks after my first infusion (I get them about every two months and have had three to date). I was able to discontinue the 2400 mg of gabapentin per day I was taking. The only other med I take specifically for CRPS is Effexor for neurogenic pain, which I did keep taking. Between my second and third infusion I started back on a low dose of gabapentin because of migraines. I did have a some CRPS pain by the time for the next infusion but it was tolerable.

As for your second question: I probably saw the same videos you did on line. I believe that Dr. decides how much to give you based on your ability to answer questions and if you start to have nystagmus (when your eyes go quickly back and forth).

After my first infusion they did ask me questions such as was I still seeing double from the nystagmus, like, how many fingers am I holding up, or how many eyes do I have?

This clinic does require that you bring close family members for the entire infusion and to stay with you for about three days after because of the high dose given. In my case, it helped to keep me grounded and it helped to have someone who understood me. There was no listening to soft music, special blankets or video for me during the infusion. I couldn't have noticed anything like that. It was like going in for general anesthesia.

All that said, it hasn't been scary. I mainly just needed a close family member there.

Good luck.

Denise

Thanks for answering. You said family to stay with me for 3 days? Is this going to stay in my system that long after only one infusion? After I get home? Were you like a new person when you walked out of the clinic? If this works do you think I will be able to stand for 8 hours?


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Each clinic and protocol is different. The only reason they want family with me after is because it's such a high dose protocol as outpatient doses go. I sleep and feel feel out of it for at least two days. The ketamine leaves your system within about an hour but the other drugs they give for nausea, halucinations, etc., and the effects of the ketamine on the brain take a little longer to work through your body. The advice is rest and let your body heal even if you feel "like a new person."

I can't walk out of the clinic on that dose. I can't even walk the rest of the day. They take me down to the car in a wheelchair and it's difficult getting me to the bed once home. I use a cane the next couple or more days. However, I have felt no pain right after the infusion. I usually feel no pain the next day though still out of it. I've felt a bit of a flare for several days after that, especially if I try to do too much but then it usually settles back down into no or little pain. I have other problems from the CRPS such as dysautonomia and edema that the ketamine does not help. But it helps the pain quite significantly for me.

I can't answer your question on standing for 8 hours because I also have POTS and can't stay on my feet for very long no matter what.