Some of you who know me personally, know that I have what is called "Dystonia Storms"
There is no warning, generally it starts at the back of my head like my head is on a string and someone is pulling that string to make my head go backwards.
What is known to trigger mine is cold weather and stress. My first Dystonia attack happened on our wedding anniversary about 6 yrs ago.In public of all places, we were celebrating our wedding annivesary up at Jackson Ranch Casino. Dave took me immediatly to our room. When I warmed up and calmed down and after I slept, I felt like nothing had happened.
It is during the Dystonia attacks that it is sooooo painful.
Kind of like having my Grand Mal seizures, after cleanching my jaws during an episode I would sleep for 4 hours with my jaws aching and a horriable headache..(I've had those since I was 16 yrs old)
Like Lupus, there is no cure, the old Artane med used for Parkensons disease patients. It works for me to help ward off Dystonia attacks.
Dystonia is a nuerological disorder.
To give you a visual of what my Dystonia
looks like, I found the best video closet on You Tube. I had Dave come look through videos with me so I can show you.
He said in this video http://www.youtube.com/watch?v=BXgNY1cdJKE&feature=related
my neck and throat is doing what Amy's is doing exactly looks like it.
(NOTE~I have photos somewhere of my attack happening showing my throat doing what Amy's is doing
Her You tube is http://www.youtube.com/ShakeyAmy
My Dystonia actually starts with either one or both sides of my neck being pulled backwards or/and my left shoulder shaking uncontrollably.
Then my facial muscles are pulled back thus creating my face appear flat during an attack.
I cried when I saw this video when Amy was trying to breathe as that is one thing that made me remember what it was like, you feel you are being suffocated.I haven't had an attack in a few years.
(Knock on wood)
But after I posted this video on baby Presley I got to thinking, "maybe some of the readers don't know what Dystonia is".