NeuroTalk Support Groups - Seizures, brain Shudders and RSD

NeuroTalk Support Groups (https://www.neurotalk.org/)

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

- - Seizures, brain Shudders and RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/97982-seizures-brain-shudders-rsd.html)

The balance problems and the falls are terrible. Those started for me this year after the RSD spread and when I was having hallucinations and acting all weird on top of the balance problems and the falls that was literally a living hell. I was told by the doctors that I could not be left home alone so my mom came to live with us for a while (that was a whole other sort of hell...lol). I've never had the seizure type thing in conjuction with the falls...but I do know how scary it is to not be in control of yourself. My boyfriend tells me some of the crazy things that I was doing and I have NO memory of them at all.

I still have problems with the balance...takes a lot of concentration to make my feet go where I want them to go. I won't leave the house without my 4 wheel walker...definitely would be far too risky. Even with the walker I sometimes can't control what my feet are doing (especially if the pain starts to get up to that 9-10 level)...but at least I feel less likely to fall and can just sit down on the seat if I don't feel right.

So sorry for everyone who has to deal with these things. It's good to know that I am not alone because when this all first started happening I didn't know if it was the RSD that was causing it because all the doctors were telling me it is not a symptom of RSD...but at the same time I wish that no one had to suffer with these things.

Quote:

Originally Posted by CZZ74 (Post 552797)

Hi I wanted to share this incase it helps someone else and saves you some time. I am in years 6 of my rsd, full body have had every treatment in the world literally including coma in Germany. Last year I began having seizures. Terrible ones. they mimic petite grand mal. The brain shudders are terrible and painful. The seizures continue, I am conscious through them , they most happen at night and in am just as I am waking. I have had one during day. I wrote dr. Schwartzman he said they are not seizures in the traditional fashion it is the rsd corrupting my central nervous system causing these events. If I could find the email i would quote him exactly. They have become so frequent and severe that over the past 6 months i have managed to get all the way from Cat scan of the brain- results nothing- to mri of the brain- nothing to the ulitmate test MRA of the brain with contrast- results perfectly normal. So Dr. Schwartzman was right. I was sure he was wrong and i had developed epildepsy from the coma- alot went wrong. I thought this might be helpful to anyone else suffering these seizures and brain shudders. It is alwasy the rsd. very depressing in a way as nothing can be done. Please post if you have these too and what meds you are taking and if it is working thank you cz

Dear, CZZ74 I have the same systoms you are experiencing and I can;t get any help for my brain shudders.I there any medicaton you are taking?

I am hitting 11 years diagnosed with type ll CRPS, I have been searching for answers myself due to the fact I don't have support with the medical field. It makes me sad and angry. Anyway, I just recently researched Gabapentin and finally talked my Pain Specialist to try me on. I was on LevorDorman for the pass 4 years but due to the copay $1,000 is a month I had to drop cold turkey, not easy and really hard but that actually did make a difference. Now with this new doctor I was thrown at 2 years now he pushes Methadone, which I have been on too for the pass 6 years but he has me on 9 doses a day at 10 mg. I feel like the Gabapentin (not the greatest as the levordorman) but hey it's a start. Now I suffer brain shudders as well since I received 2 Stellate Ganglion blocks. I left unable to speak for 3months and now I have brain shudders unannounced. I can't walk, talk, function. I am bed ridden until they wear off but my loss of speech is the side effect that can last days to months. My thoughts are with you. I hope the Gabapentin help you!