Originally Posted by SandyRI

Hey Mike -

I hurt myself in Nov 2006, so I just passed the 4 year mark. I wasn't diagnosed until June of 2008.

I started out my ketamine treatments with the 10 day protocol, but at less than 200 mg. per day. I didn't get up to that dose until my 26th or 27th infusion. I believe I was at 150 mg. most of the time, but I'm not certain because my doc's practice was to not disclose the dose to his patients. I weighed about 120 lbs or so when I started the infusions, and lost some weight during the the first few months.

I began my treatments with Dr. Getson in South Jersey, who followed Dr. S's protocol. I did the 10 days (with the weekend off), then 2 days a week for a month, then I did 2 days every other week for a month. Then I went to 2 days a month. In late July I was ordered by the RI WC Court to begin treatments here in the State, with a local doc who had just been licensed to perform the infusions, and I began to get my infusions once every 3 weeks. My doc has just decided to start trying 2 days in a row once every 4 weeks. I will begin that in December. Since April 19th I've had 28 infusions.

My pain has improved quite a bit. It is not perfect. But I am off the morphine (Fentanyl) and rarely take any oxycodone. My biggest complaint has to do with migraines, which I never had before I had RSD. I have other drugs that I use now to try to control my headaches.

I still notice weather changes, but nowhere like before. And I have to be careful how I use my arms and will always have trouble lying down on my head. Generally, I'd say that ketamine has reduced these issues about 80% for me, such that my pain is usually about 20% of what it was. And sometimes, on really nice days, my pain can be at zero. Right now I'm close to 3 weeks out from my last infusion, by the time 4 weeks rolls around I might be down to a 50-60% reduction in pain. I can't remember ever going back to where I was before I started the treatments. It's all been GOOD!!

I don't have much of a tremor or other movement disorder, so I can't respond to your second question.

Neurocognitive - I think I am slowly improving since I started the ketamine. I was the worst about a year and a half ago - I could barely have a conversation because I couldn't remember the name of ANYTHING!!! I'm getting better. Reducing the meds helped. Feeling better so that I could move around more also was a big help - I am a big time walker. Going back to work has been great for my brain. But I do continue to experience memory loss issues, etc. I am not like I was before. But everyday that goes by I think I get better and better.

After the 10 day protocol, my first month consisted of 2 days every week. And after that it was 2 days every other week. Then we started to spread them out because I was doing well.

I've tried many other treatments - tons of different meds, 8 stellate ganglion blocks, a lumbar block, 8 lidocaine infusions, and the results from the ketamine infusions were profoundly more effective than all of them put together. I still take Cymbalta, Topamax, Clonodine, Skelaxin, Ambien and Fiorcet. And I put Lidoderm patches and Voltaren gel on my sore spots.

I sincerely wish you well. It is truly awesome that more docs are offering this treatment. Please let me know if you have any more questions.

XOXOX Sandy