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-   -   Anyone with Hemidystonia? (https://www.neurotalk.org/movement-disorders/254471-hemidystonia.html)

Katkeyper 10-29-2019 11:09 PM

Anyone with Hemidystonia?
 
I'm new to NeuroTalk and looking for others to discuss their diagnoses of dystonia.

How long have you had your dystonia? What is your diagnoses? What are your triggers (mine are: light, especially fluorescent, vibrations from cars/elevators, brushing teeth, eating, humming, singing, bending, walking on an incline, looking upward, etc.).

What is your treatment plan? What doesn't work? What is your advice?

My diagnosis has shifted from Hemidystonia (left face) to Paroxysmal Hemidystonia, (entire left side). I also have spasmodic dysphonia which impacts my left vocal fold and creates a whispery, hoarse to silent voice. This facial pulling started sporadically in 1999. In 2018, occurrences went from every two weeks to now daily. The daily deal is very tiring, difficult to be very physical which makes things worse. Working with chiropractor/PT on activating muscles that don't want to play nice, learning exercises to help keep them playing nice. Does it work? Some days, better yet...some moments.

Would love to hear your trials, tribulations and general "what dystonia means you you." Thanks! Good luck - and remember, be your own advocate!


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