Monday, March 9, 2015

Dystonia - Living with it!!

I have it and will be putting videos up on my progress with Botox treatment - it has been better at times and worse at others - If you suffer from Dystonia you know the pain it causes and you are probably use to it - also used to the strange looks you get when you are shaking - I just own it if someone asks "You don't agree...you are shaking your head NO."  I just state that I have Dystonia and that my head is shakes in the negative manner vs the positive manner - I am not usually saying NO unless I am really exaggerating my head movement in the NO direction so you know for sure it is NO not just the tremor.

The 1st treatment was awful - large probe needles were stuck in my neck at various locations to read the muscle movement - mine was crazy loud and they informed me that most people just have there head balance on their shoulder and have no muscle activity and mine was off the charts - my left side in pulling my right side and the back of my neck is pulling back so my worse tremor occur when I look down and to the right.

The 1st  treatment was good for the first two weeks and then loads of pain in my neck and the back of my head and the shake got worse - new muscles got started moving my head and they seemed to be stronger then the original set - so now it was worse then it was before all the huge needles and the injections.  OUCH!!!

I am on my 2nd treatment and I am not sure yet - it seems better, but I have pain in new muscles again in new places in my shoulders so I think other muscles are trying to take over pulling - we shall see I guess - The doctors put larger amounts of Botox in my neck this time and more of it in the left side muscles - but I still shake- maybe not as bad but not much of an improvement - I know it can take some treatment for them to find the correct areas to target so I will go again - 

I had a cortisone shot before the last treatment because of the muscles in my left arm were pulling so much it caused a repetitive muscle injury that still bothers me and it is worse now since the 2nd treatment - that muscle is strong and pulling hard.

Videos coming soon - 

Good luck and hang in there if you suffer from Dystonia -let me know what you have found that works.  Thanks
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