I will add you to my FR prayer list as well.
There are a number of other FReepers dealing with debilitating conditions as well.
You might be interested in this guy’s story.
John Stumbo
http://www.johnstumbo.org/blog/
He’s a pastor, who two years ago got hit with a debilitating condition that about killed him. He spent months in ICU and almost died there a a few times while in there. They never did figure out what about killed him but it has left it’s marked. He wrote a book on the whole experience, which I found very moving and helpful in dealing with my own struggles.
It’s entitled *An Honest Look at a Mysterious Journey*. You may be able to identify with it. The information on how to order it is in his blog. It’s VERY well written.
I was working in a nursing home as a maintenance mechanic. I saw patients who had everything from Dementia to terminal cancer, MS, even STD's dieing. I thought it was either a brain tumor or MS. Think of the disorder as the brain being a computer and the processor being overworked. The computer freezes and programs shut down. Programs in my case being shut down are ones that say where I am, how I got there, where I am going, how long have I been, going, what time is it. Sensory overload does it. It also causes the violent spasms or seizures.
If I don't get the spasms stopped soon enough the system crashes for about 20-30 minutes even though I am 100% conscious and aware of it. I'm thankful for the miracle drug Xanax which works fast. For several years I was mis diagnosed with General Anxiety Disorder and given meds that only made matters worse.
My first full blown attack happened while on the interstate driving 75 MPH and my wife was with me. GOD created the human brain for survival and it has capabilities which take over when certain things happen. I've had about a dozen of such attacks and not gotten hurt. I haven't had one in several years because I head it off with either medication or if at home picking up my guitar and playing it till the spasms stop.
Considering what it could have been this is more like an annoyance. It won't kill me but it is lifestyle altering. But I have helped others whom this happens too and they don't understand what is happening too them. I tell them what to have the doctors check for which is Vestibular and sensory processing dysfunction. I'm also over 50% deaf now and that has lessened the spasms as well. I was born with sensory issues like single eye functional and Inner Ear issues. At age 34 it all reached a breaking point. There is no name for the disorder as such as it is likely several interacting on each other & hitting at once.