Mandibular dystonia after stroke - Dystonia Society

Dystonia Society

598 members202 posts

Mandibular dystonia after stroke

Gilldy profile image
7 Replies

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?

Written by
Gilldy profile image
Gilldy
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Tricia33 profile image
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 profile image
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 profile image
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 profile image
Gilldy

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

timgann profile image
timgann in reply to Gilldy

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

Gilldy profile image
Gilldy

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

timgann profile image
timgann

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

You may also like...

Oral/Mandibular dystonia

Is there anyone here who has oral dystonia caused by a tooth injury (dentist or somehow else)? What...

Hi! Post-Stroke Dystonia patient here

into better treatments for people with post-stroke dystonia. Despite my condition, I've been able...

Coping with dystonia

Does anyone out there have dystonia in both legs as feeling really frustrated and feel I'm letting...

Help with Cervical Dystonia please

Cervical Dystonia after being unsuccessfully treated for a head tremor caused by MS. I received...

Trial for dopamine- responsive Dystonia?

even closed my shop & stopped sewing after 26 years.) I tried Botox twice and I decided I would...