DizzyGirls Posted July 15, 2016 Report Share Posted July 15, 2016 Has anyone developed dystonia rather suddenly? Or at all? Daughter is still suffering and tendons are pulling so tight it's just moving her bones around. It gets worse in the evening, but tendons are staying tight all the time. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 15, 2016 Report Share Posted July 15, 2016 Don't know about this one but this seems like a good site to start learning: http://www.dystonia.org.uk/index.php/about-dystonia Quote Link to comment Share on other sites More sharing options...
dancer65 Posted July 16, 2016 Report Share Posted July 16, 2016 Sorry to hear your daughter is having such a difficult time. I taught a girl who had neck dystonia her muscles were so tight her neck was held to one side all the time. She was treated with Botox and wore a body brace which did improve it and relieved some of the discomfort, if I remember correctly she had injections about every six months hope you can find some answers Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 16, 2016 Author Report Share Posted July 16, 2016 Thanks Katybug and dancer 65! I'll definitely read the link, tons of information! The botox, too. I have ready that quite a few people have success with that. I'll give everybody an update after we go to Stanford the early part of this week. Just trying to maintain until we go. The two things that she has noticed in all this is that fatigue and adrenaline affect it. So, we'll see.... Quote Link to comment Share on other sites More sharing options...
Amalia01 Posted July 18, 2016 Report Share Posted July 18, 2016 Found this for you. Not sure if Amitriptyline is causing this but it is possible. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC489096/?page=1 I'm really sorry your daughter is going through all of this. Best wishes. Quote Link to comment Share on other sites More sharing options...
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