What is Dystonia
Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may ...
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Hello I am new to this group also am part of ankylosing spondylitis group. My dystonia is very violent when it hits. Like today i was in the grocery store and had not taken my valium until eleven am and I started jerking and twisting and dancing in the middle of the store and could hardly walk but i just kept going and looked at people like take a good look, it is frustrating and i feel like screaming or crying man or not,but i just got home the best i could and rested, i also seem to be tremors more, i have to be careful already fused and if i jerk too much i can break my neck or spine,to me it is like a convulsion, because my neck is going to the right hard and fast and the rest of me jerking but i nevery lose consciousness, this is a terrible thing to go through but i am very thankful for the valium 5 mg. that helps i am allergic and have reacted to all the rest of the stuff i wish you all the best and you are in my thoughts, this to me is a very weird and strange illness to have and most people do have other things going on with it. peace and light and i hope you all can find relief and joy in each day even in the small things. Steve
Posted on 10/02/09, 05:10 pm |
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Hi, Steve.
My mother has PD and Dystonia. Prior to being diagnosed with Dystonia about a month ago, she took Ambien and, occasionally, Valium in conjunction with her PD medications to be able to sleep at night and Valium during the day when the Dystonia pain and spasms just got too much for her. Since being diagnosed with Dystonia, she has replaced both Ambien and Valium with Klonopin upon her Dystonia-neurologist's recommendation, and that has REALLY made a diffference. Between this new drug and Botox injections, she has made noticeable improvements and feels considerably better. Just something to keep in mind. Best wishes to you, Iris 
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you poor thing , i feel 4 you, i hav it in my neck, hav just had denervation surgery,hav you thort of d.b.s xxx
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So sorry, I remember with the cervical dystonia I could only get relief by sleeping. My head pulled so hard to the right, it twisted my spine.
After 18 years, I still have tremors, but very rarely the hard pulling to the right. I also have multiple sclerosis, and spasmodic dysphonia, inability to talk, another form of dystonia, have just had that for a year. My voice box spasms sometimes and that causes pain. I wish I could make all the horrible brain diseases go away, but I can't. I am glad at least the valium helps a little. I took that in the beginning. I am so sorry, that's about all I can say.
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I can so relate!
I tried Klonopin and it was really bringing me some relief but I work at a DMV communications center where I speak with people on the phone all day. On Klonopin, my symptoms were better but I felt like I had just knocked back a few drinks at a bar and who the heck knows what I might say to the customers...so I stopped it and went on Valium which isn't as effective. Now I feel like maybe I should just try to go on disability but how would I live on THAT????
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Hi Steve,
I am also new to this group and have just recently been diagnosed with dystonia. I'm sorry to hear that you are having a hard time and hope you find some relief maybe from other treatments. I too have very violent shaking episodes and muscle spasms which my husband likens to me breakdancing. I am on diazepam but it isnt working that well. Only on 2mg twice a day. I find a great deal of peace by meditating and heat to reduce the pain from the constant muscle activity and lots of sleep! All the best Sharon
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Sounds so familiar...only difference is I jerk to the left LOL!
I used to really get set off by flashing lights. There were these little red flashing lights in the grocery stores that alerted you to notice a stack of coupons in a dispenser. OMG, one look at that and away I went....from zero to spazzo in 10 seconds flat. Complete freakazoid with a grocery cart.
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Oh my goodness!
Bright lights, flashing lights are my main trigger. I can be fine maybe apart from a shaky head to bright lights triggering a major episode. You're not the only one dancing in the middle of the supermarket! Still could be worse, I may have taken someone out with a tin of beans!!!!
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