NeuroTalk Support Groups - Ketamine worked but didn't hold

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Ketamine worked but didn't hold (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/108043-ketamine-didnt-hold.html)

I've had 2 infusions. they're like inbetween low and high dose, and they last 4 hours.

the first one lasted 6 weeks- complete remission.

the second lasted 5 months- another complete remission.

i'm about to go for my 3rd on 12/29 and i'm hoping that the remission will again increase in the length of time it lasts.

after the infusion i'm on ketamine pills for 2 weeks, along with ativan to prevent hallucinations.

I am so happy for you. My daughter just had her 2nd infusion, the three day four hour escalating doses. She is cleaning her bedroom right now. She is still a little dizzy, but I can see such a difference in her. I will pray that your remission is much longer. Good luck.

Sandy

Quote:

Originally Posted by msdrea83 (Post 590131)

Perhaps you needed a larger dose? Don't give up! Some of the coma patients had lower doses of ketamine which gave them relief but did not hold and the coma worked well for them. There is lots of research going on. They are even researching Thlalidomine infusions!
Don't give up hope!

Quote:

Originally Posted by momzpeachy (Post 589597)

Hi everyone,

I haven't posted in a while because I was really not well for a while thanks to this wonderful disease. I then started Ketamine and went for the 10 day outpatient program. My last day was a week ago yesterday. I felt amazing during those 2 weeks. I felt somewhat normal again. The inflammation went down, the redness was almost gone, and the pain level went from a 10 to about a 2 by the 3rd day of ketamine. I was so happy. The last day, I walked out feeling awesome..not even tipsy that day and my dad and I went out for lunch. I wasn't even tired the whole day.

Well, by Tuesday the pain was creeping back up. By yesterday I was in a complete flare all over. It was horrible. I was in so much pain I could barely move and all I wanted to do was cry. My Dr knew that by Thursday I wasn't to good and I'm scheduled for boosters next week. They called me yesterday and brought bad news. After 10 days of ketamine, the relief should last longer than it did for me. I shouldn't be back to where i was already so now they may cancel the boosters and ketamine all together after next week. AAAAAAAAAHHHHHHHHHHHHHH!

I am so upset now because that leaves me with nothing! It worked but not for long so now what's next? They don't have an answer other than I will have this forever. Wonderful! I don't know if I can take this pain forever. I'm only 37 and can barely move most days. They don't know how to treat this because everything they have tried has failed. I feel stuck and hopeless.

I just needed to vent. I don't know what's next for me now.

Hi Momzpeachy,
I hear ya! I completely understand your needing to vent and this is a great place to do it since we all have been through the ringer a few times and can understand your pain. This site has been the greatest blessing for me since no one in my family understands the problems we have. I am sorry for the problems you are going through and pray your doctor will have another idea of what to try. It does get frustrating trying everything and nothing seems to work. Hang in there. I was thrilled to hear you were feeling somewhat normal at one point and even went out to lunch!! Wow. That is great!!!

I have full body RSD and a host of other lovely neurological diseases which adds to the pleasure of my life and I understand you not being able to live like this the rest of your life since that is the same feelings I have had all last week. I have waited for Ketamine for over three years now and finally had all my clearances done (cause they change randomly each year) and was sent a notice to appear in court back in Sept 09 because the workers comp ins co wants to stop me from having the treatment done!!! I was devastated and felt just like you did...especially when a few hours later I recevied a phone call asking me when I wanted to setup a start date for the treatment. Here I waited so long and now to be told I can't do it?? I still have not had it done with no end in sight for waiting and I am about at the end of my rope too. I continue to pray and will keep you in my prayers too. Best of luck and watch some funny shows on tv just to laugh and get it off your mind for a moment.
Kathy d