Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-28-2014, 12:38 AM #1
taylor6 taylor6 is offline
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Question Keppra? &Anyone IN St Louis,MO area? Best DRs/ PM DR?

Ive currently just started going to Barnes PM Center. Using Dr Rastogi. Has anyone used him before? Had my second Stellate Ganglion Block done earlier today... with no relief again in my forearm. Actually having more pain the when I went in. Is this normal? My first one didn't have much relief at all if any, but he wanted to try a second..

Gave me a DVD on SCS today, to have me look over. This is really the first dr whos put a definite diagnosis of CRPS apparently stage 2. Just started Keppra 500 mg twice a day. along with amitryptline at night, and tramadol for bad days.
Also I havnt really seen many people talk about Keppra for crps? Anyone tried it? Lots of questions I know, just hurting and cant sleep.
my point is in stage 2 is it normal to start talking about an SCS this fast? Is that really my only option if the third block fails? Everything ive read on it seems to put a lot of limitations on the person (lifting,running,bending) Im 22... im not super active by any means but I don't want to be that limited constantly thinking about it.
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Old 02-28-2014, 01:18 PM #2
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Keppra is a AED and its one that does NOT help nerve pain its only used for epilepsy, so im not sure why he put you on it. I was on it for my seizure's and the side affects were bad. Keppra is known to cause aggression, insomnia, agitation and depression. Personally I would have your dr take you off of it because its not necessary and its a strong AED to be on and your on a high dose. If he wants to put you on something to help nerve pain then you can try gabapentin, lyrica or even tegretol. I went off of it after it started changing my mood and I couldn't stand it and it wasn't helping my epilepsy. I was on tegretol for my seizures, but we also found it helped my nerve pain and didn't have the side affects of weight gain like other AEDS cause. Don't take yourself off of it, you need to talk to your PM and have him wean you off. And usually its family, friends etc.. that notice the mood change before you notice it yourself. Its just not a good AED to take unless its absolutely necessary to take it!


As for the SCS there are some on here that have had them and it either worked or it didn't. Always be careful because any surgery can cause spread of the RSD if not managed correctly. I personally decided a SCS was not in my best interest and I manage with meds for now and I have an apt this summer with Dr Schwartzman's team of Drs (hes retired) in PA and see if we can try ketamine or IVIG.

If you have anymore questions let me know. Being in my young 20s myself I know its not easy!

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Old 02-28-2014, 05:11 PM #3
ginnie ginnie is offline
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Default Hi Taylor

Tos is right. Look into that Ketamine infusion. The military has had good success with it. If you want current data, JAMA is available and is good for research. Tampa Bay Hospital is one that uses Ketamine. ginnie
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Old 03-01-2014, 02:57 PM #4
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That's why I wondering about it... I havnt really heard of anyone being on it for crps.. I was on lyrica for a yea and it was definetly helping but when I switched insurance to Aetna they wouldn't approve it. Id have to appeal it.. Then I got put on gabapentin and had an allergic reaction to it.. I have read about mood changes with keppra and have noticed a signicifacent change in mood, already after only being on it a week..

I was just told to start 500 mg vit D. and 2000 mgs omega 3 fatty acid as well..
I guess now itl be the fun fight with the insurance company. hopefully we can get this appealed
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Old 03-02-2014, 02:51 PM #5
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Yeah I was on it for just about a week when I noticed the mood changes and my dr refused to take me off of it and after about a month a weaned myself off because it just felt like it was making me toxic, its way to strong of a drug and one I would NEVER try again.

Have you looked into ketamine treatments? Keep up with the fight with your insurance since you know the lyrica helps. Ive also heard about Vit. C helping maybe somebody on here that takes it knows how much.


Quote:
Originally Posted by taylor6 View Post
That's why I wondering about it... I havnt really heard of anyone being on it for crps.. I was on lyrica for a yea and it was definetly helping but when I switched insurance to Aetna they wouldn't approve it. Id have to appeal it.. Then I got put on gabapentin and had an allergic reaction to it.. I have read about mood changes with keppra and have noticed a signicifacent change in mood, already after only being on it a week..

I was just told to start 500 mg vit D. and 2000 mgs omega 3 fatty acid as well..
I guess now itl be the fun fight with the insurance company. hopefully we can get this appealed
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