Originally Posted by Rio1

Wow, where to start? First, I'm glad I came upon your post. I am 42 years old and have suffered from myoclonus since I was eleven. I have PTSD from what occurred the day it reared it's ugly head until now. I have horrible startle responses, myoclonic jerking, spasms, occasional trouble speaking audibly, even walking is sometimes stiff or feels like a weight is pulling me down from moving forward. Even exercising gets impeded. The worst part is that the drug that seemed to more or less alleviate the symptoms for about 10 years is now looking like it's going to be a thing of the past. No, I'm sorry, the worst part is that I now have panic attacks due to the myoclonus. As in PLEASE DON'T LOOK AT ME in public. Or, "care to take a video and post it on youtube?"

I once heard about Tourette's Syndrome, "The good news is you won't die from it. The bad news is that you won't die from it." While I don't have Tourette's, this is bad and getting worse.

The sucky thing is this--it mostly occurs under stress. Right now, typing away, nothing. Not a single twitch, jerk, spasm, etc. Trying to do a precise movement in public? Completely different person.

I was on absolutely no medication when this happened, but it HAS gotten worse with SSRI's. Absolutely, no doubt, worse. Don't let the doctors fool you--SSRI's can have a dopaminergic effect and send your neurotransmitters into a frenzy. Ask the doctors, before they give you all the "data", if they are on or have ever been on your medication. I'll bet you not one single doctor has. I tell my doctor to start checking out the blogs on the internet to get his information on the side-effects of the drugs he prescribes and stop believing the big pharm companies' lies. We, the people on the prescriptions, will tell them the truth. Big pharm? Never.

I don't talk about my myoclonus with friends AT ALL. I keep it to myself. If they notice it, they don't tell me. I certainly don't tell clients (I'm mostly drugged anyway, so it's harder for them to notice). The only ones who know my woes are my family and husband.

While our condition sucks, sucks, and sucks some more, it is good to find others like us out there. It is a very isolating condition. I know I don't know of ANYONE that has myoclonus.

I hope you'll keep in contact. I wish you the best.