Mandibular dystonia after stroke

[Gilldy]

Hi - I have a form of dystonia which makes my jaw clench. It's worse at night. It came on about 6months after a stroke but also just after starting sertraline (for anxiety). I finally got my GP to take it seriously after several visits and got 3 separate shots of Botox from a consultant. I came off sertraline about 3minths ago and at first thought it was getting better. Unfortunately it is now getting worse again. Has anyone got any ideas?

[Tricia33]

i have the same and get you maybe need regular botox. I should get mine every 3 months but with covid has been delayed. It takes a few sessions to see if it is suitable and works for you

[Gilldy in reply to Tricia33]

Thanks for the quick reply. Yes - getting Botox seems the only way forward. The consultant in Leeds would only give me three shots then said I'd be ok - obviously wrong!I was just hoping someone would know of some other cure - wishful thinking probably.

[timgann in reply to Gilldy]

Hi that’s ridiculous Botox has to be given every 3 months Is Dr movement disorder neuro? I have mandibular Dystonia but mine affects my tongue and lips

[Gilldy]

Thanks - I'll speak to my GP about getting referred again. Sigh!!!

[timgann in reply to Gilldy]

I am assuming you have Dystonia diagnosis confirmed. There are other reasons for jaw clenching

[Gilldy]

Yes the consultant said it was definitely dystonia. Not that I trust him particularly. What are the other reasons?

[timgann]

Stress is main one. Have you seen a dentist?. They can feel the muscle and advise. My dentist was interested in my condition