Dystonia Society | HealthUnlocked

Does anyone get swollen muscle at side of neck? And what to do about it 😵‍💫😕

does anyone else have severe storms?

I seen a neurologist who thinks I may have dystonia. From what I've read dystonia is triggered from involuntary movements. I get single movements 1st in hand,...

Does anyone else have difficulty with SSRI's exacerbating Dystonia? I have to take ridiculously low doses or spasms become so painful... Psych docs and nurses...

Hi I know that dystopia doesn’t tend to affect cognition or memory, but I have infant onset generalised dystonia and I’m now coming 52. I’ve had to give up the...

I live in Manchester in the UK happy to travel but would like advice on specialist mine isn't. Was in and out of hospital for many years seen loads of people...

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...

Can anyone recommend a soft cervical collar which does not come into contact with the throat? Sounds like dumb question…I am a survivor of severe sexual...

Hi, has anyone experienced severe shoulder pain following Botox? I have cervical Dystonia and have been receiving Botox injections for a while and have feel...

Hi, We are looking to relocate to the IOM for work purposes but I can’t seem to find a botulinum clinic for blepharospasm on the island which would mean a trip...

Does anyone have Cervical dystonia like symptoms that have been identified as being Functional ?What helps manage symptoms ?I have trouble eating anything...

Found this bit on a website and wondering if anyone else besides me experiences dyspnea and panting? Abstract:...

Hello, I was diagnosed with right sided cervical dystonia in 2018. I have been suffering for almost a year with a really bad pain in my right shoulder and...

Please help me. The cervical dystonia pain in my neck is becoming truly unbearable. I refuse to keep living like this. The only medication I take is Klonopin,...

Hello all My sister was diagnosed with cervical dystonia 10 years ag and has 3 monthly botox injections. She has recently started to get dizzy spells and...

Hi all! Just wondering if anyone here is using Artane for their Cervical Dystonia? If yes, is it working to stop head pulling & twisting & what is your dose?...

Hi All! I have just joined, but I have had ST diagnosis March, 2019. However, when I reflect back on when symptoms started, we are talking at least 3 years...

Diagnosed with this condition 9 months ago, struggling with accepting it. I have become very anxious and stressed over the last few months as I am so self...

Hi, I was recently diagnosed with Cervical Dystonia after being unsuccessfully treated for a head tremor caused by MS. I received Botox 3 weeks ago and my pain...

Hi everyone, does anyone have experience of taking mirtazepine and was it helpful? I have just started it this week. Sleeping better but lots of dreams.

Has anyone on here experienced or has DBS plz - I know mainly it’s for Parkinson’s but they do it for Dystonia too & wondered if anyone had the procedure or...

Can anybody plz help me with advice - I’ve been recently diagnosed with dystonia - it affects my neck & I have chronic head pain/jaw pain & ear pain/tinnitus...

Well I’m due to go to the eye clinic in 10 days time for my blepharospasm treatment but am considering postponing it because the eye clinic is in a big city...

Am I at hi risk with the Coronavirus. And I have DBS fitted

After years of complex issues and knowing we can send satellites into space finding millions a miles away pictures are continuing send answers back. Continue...

My initial symptoms started with balance issues. The way I would describe it is, say you were in a canoe for a long period of time and then you get on to...

Cervical Dystonia and Exhaustion Please can anyone tell me about their experience of exhaustion/rag doll days or patterns when this occurs. I have had CD for...

Dear All, Will you please share info on what makes your dystonia better or worse. In my case the worst spasms ( neck and abdominal muscles) happen when I try...

Dear All, would really appreciate if you would share your experience in medication and doses. I have so far only tried Trihexyphenidyl ( max dose 18mg/day )....

I was diagnosed with dystonia but the GP never told me so I learned about it just a year ago and the 2018 report said I have ET and dystonia. I am far away...