I'm new to the forum, but have had CRPS for four years. Last spring I had a SCS implanted and was able to go off my narcotic meds (Fentanyl, oxy, and morpheine), but when winter hit I had to start taking codeine. It's not covering the pain now and I was wondering if anyone has had any luck with Ketamine (infusion or daily med)? I really don't want to start down the narc road again, them having been truly taxing on me physically and emotionally.

I'd like to know what experiences people have had with pain relief, effect on sleep (if any) and if anyone experienced any side effects. Also, is there a detox with ketamine? I'd like to be able to discontinue it for the summer as I'm financially strapped.

Thanks!

Alice

Hi Alice,

Nice to meet you and welcome.

You stated you have an SCS Implanted put was still in pain. Is the SCS not working properly? It's wonderful that you are off all narcotics with use of the SCS. It sounds like your looking for something for acute pain until the weather breaks. I have done ketamine infusions and yes it did help and are also on very littles meds. but it's not for acute pain from as far as my experience has been and from what I have been advised by my doctor.

Good Luck

Gabbycakes
s

Hi Alice,

My RSD has been 80-90% better since starting ketamine infusions last April. I had been sick for several years, but really sick for about the year or so leading up to the infusions. Ketamine has helped me get a decent chunk of my old life back, although things are far from perfect. I tried many other treatments before going for the infusions, and I found that they were far, far more effective than anything else.

Ketamine doesn't work for everyone, but it does have a pretty high rate of success - the sooner you start it the better your chances of having it work for you.

I went off all opiods about a month into the infusions. That was my choice. I still take maintenance meds for migraines and a lot of Fiorcet.

You need to continue the infusions to benefit from them. Once they are discontinued, the ketamine wears off.

It can be difficult to obtain insurance approval for ketamine and deductibles can be high. My ketamine is covered in full because I am a victim of WC. I need to go to WC Court periodically to get my infusions authorized by the judge, since the insurance company denies them otherwise. So far, I've been fortunate - but I have no guarantees regarding my future....

The best of luck to you. Whatever you decide, make sure you end up with the best doc possible.

XOXOX Sandy

Thanks for the replies!

My SCS is working, but when they implanted it they were unable to get complete coverage, so it doesn't help my whole foot. Thus walking is still a problem and I like to be as active as possible. I'm getting back to work and possible going back to school this fall, so really trying to find a pain plan that is workable for my brain.

I'm in Canada (BC) so if I were to receive infusions, they would be completely covered. I am actually more curious about taking Ketamine medication as I want to limit my time in hospital (I tend to pick up infections) and my reading about hallucinations experienced as a side effect of the infusions frightens me a tad. Before I got CRPS, back when I was younger and crazy, I had done ketamine recreationally a handful of times and didn't experience anything frightening, but was also less aware of drug effects in those days and thus not anticipating any such effect.

Have you ever tried it as a daily medication? I've read it can be effective in conjunction with a narcotic and am wondering if the codeine I currently take is enough to make it an effective treatment. I really don't want to sully my mind again.

I've never taken oral ketamine, but haven't heard any good things about it either. From what other people on this board have reported I wouldn't recommend it.

The low dose IV infusions - 200 mg each, 2 days in a row, monthly, that I currently receive do not cause me any hallucinations. And they have been extremely effective in controlling a lot of my symptoms. I wish I could say that I am cured. I am not. But I am much better off than I have been since I was injured in Nov 2006.

If you can arrange ketamine infusions on an on-going basis with a decent, knowledgeable doctor through your Canadian health insurance plan for free -WOW!! I would advise you to go for it!!

Good luck, Sandy

I took ketamine orally for about 3 years, it worked pretty well. Then I started getting ketamine infusions. I go into full remission immediately after them for about 6 months at a time. Then i get another. After the infusion I take no pain meds, until the pain starts to come back, just until i'm able to get another infusion. For 2 weeks after the infusion I take booster k pills in the morning and at night, and ativan or seroquel at night to help sleep w/o hallucinations. I've never had bad hallucinations, just constant music in my head or in the dark the textured ceiling will morph into various things. haha i think its entertaining cause i'm aware of whats going on.

Sorry to hear about everything you are going through right now, Alice.

I'm 16 years old and have had RSD since I was 12 years old. Started in my left leg and has since spread to both arms and possibly my back, although Doctors aren't sure if it's definiately there as I have underlying back issues also.

I tried everything in the way of medications and procedures and nothing seemed to help and I had severe side effects from some of the medications. Eventually my doctor told my mum there was little he could do but prescribe oral Ketamine. He didn't want to because of my age but said it was the only thing that might reduce my pain.

We agreed to give it a try and I have been on it for nearly a year and half now. I don't take it every day as my doctor feared it may mess around with my hormones. I only take it when I absolutely have to.

For me, it is the only med that has had some impact. It can make my pain go from an 8 out of 10 to a 5 - not great but better than nothing.

Side effects vary for me. When I first started taking it I got really sick on it but i'm now used to it and don't have many side effects. If I do get them it tends to be when I haven't eaten much or are feeling ill and they are only minor and last a short time.

I wish they did the Ketamine infusion in the UK but they wont, especially because of my age. I feel it would really help.

Take care and I hope it helps should you try it

Alison

I have had three ketamine infusion treatments and for me it has been a true blessing to be pain free. The treatments do wear off and for me it takes three to four months. I did reverse my last one by being in a small room when a band had their amps turned up. I have full body RSD and can not tolerate loud music. my doc is Steven Pulley MD in SLC which is a hour flight for me.

Do you mind if I ask how many days you get your ketamine for each time? And how much you receive in each dose? I would love to be able to go 3-4 months between infusions...

A bad stomach bug reversed the effects of one of my infusions over the winter...it was awful, because I am no longer on heavy meds. My doc told me infections will often do that.

Andrea, thanks so much for posting more info on oral ketamine. I plan to ask
my doc if perhaps taking it for a few days after my infusions could help them
last longer.

XOXOX Sandy

No problem, if there's any other info you want about the infusions i get let me know.