I saw a yet another neuro doc last week. She said patients travel all over U.S. to see her. She was very knowledgable about RSD. To my relief, she never touched me to give me an exam because she said it was obvious I had RSD, so there was no point in causing me any more pain. What a relief for a change!! She went through my records and said there was nothing else that could be done. I have tried everything. We spoke about ketamine infusions since that is all I havent tried. She said she has had 5 RSD patients that have used ketamine & that all of them have had long-term hallucinations after receiving the ketamine treatments. She also mentioned transcranial magnetic stimulation, but said that she seriously doubted that it would work for me since nothing else has. I also have bipolar disorder & she said that could mess with things psych wise.

Responding to your ketamine statement - I've had 23 infusions, and I've NEVER had a hallucination. EVER. All of mine have been low dose - under 200 mg - and delivered with other preventative meds in the infusion at the same time. And I look and feel better than I have in a really long time. I'm nowhere near perfect, and probably never will be. But I'm off opiod meds and back to work full time. Fiorcet is the only med I take on a regular basis to control my pain.

Maybe at really high levels ketamine can cause hallucinations in the long term. But I want to make it clear that at low doses, on a regular basis, me and many of the other people that I have met have experienced nothing of the kind.

XOXOX Sandy

I had a 5 day inpatient ketamine infusion and I did not have any hallucinations after the procedure....Not sure where you doc is getting her facts? Where do you live?

Debbie

I am very glad to hear that this doc has her facts wrong about the hallucinations. I had only read about hallucinations during the ketamine infusions, not after. Not sure why she said that about her RSD patients.

Dear Firegirl and All,
I had to chuckle to myself when I read your posting about hallucinations because I have already taken medicine (Clonidine 0.1 mg) and had hallucinations or scary visioins if that is what they are called. It was frightening and then I realized that is what Dr. S. here in Philly gives to prevent hallucinations! I guess I will need something other than that for my ketamine treatments?? Like the previous posting said they are supposed to give you meds to prevent such things from happening. I wonder if the doctor only sent five patients what were the circumstances surrounding those treatments? Where they the only five she had ever done? There are just so many variables and as we all know you could have 50 people do one treatment and with RSD most of the outcomes will be different. Just like in any survey done with anything you always need to figure out who is doing the survey and what benefits do they have if any in the outcome of a survey or treatment. Just ask more questions before you say no completely. I, like you and others here, have tried just about everything except ketamine and I am waiting for judge's decision for approval to have it done. Yes, it is scary but so many people I've spoken to in the last 4-5 years say it works wonders and to always get it if you can. Heck, at this point I would try just about anything to get this monster into remission...what do we have to lose???? Best of luck to you and never lose hope!!!
Take care,
kathy d

Maybe I'm just cynical, but why does she have to advertise herself to you when you're already in the office? It's not just that that's in poor taste, but – after eight years as a registered nurse and over 10 with CRPS – I find that it means the ego is driving, *and* the skills aren't up to snuff. Quite apart from other clues…

Why would she say TCMS is unlikely to work for you "since nothing else has," when the mechanism is so completely different from anything else you've tried? That was despairing, but not logical. It's rotten to close the door on someone in your position, without even looking to see what's beyond.

Moreover, why would being bipolar mean that it's contraindicated? TCMS and, in different ways, tDCS (transcranial direct current stimulation – nothing like ECT; this comes out of a 9 V battery) seem pretty impressive for many psych issues.

She doesn't seem to know much about it at all, but certainly feels free to chase you away from it on the basis of her ignorance. That's unfortunate. I hope you get to see a neuro who either knows more, or blows less hot air about things they don't know.

In the meantime, it might be worth researching transcranial magnetic stimulation and transcranial direct current stimulation. I'm looking into them myself, and I'll write an article once I get a sense of them. I can't do much in the way of meds, and it's hard to get massage and acupuncture paid for, so I have to look at this stuff. **

Best wishes. Good luck getting a neuro with a brain.