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Dystonia Society

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Swollen muscle

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

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

reg01

•5 months ago

Be the first to reply

storms

does anyone else have severe storms?

debbieduke

•8 months ago

1 Reply

Do anyone get triggered by by other things not just involuntary movements?

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,...

I seen a neurologist who thinks I may have dystonia. From what I've read dystoni...

Charts

•10 months ago

8 Replies

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

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...

Does anyone else have difficulty with SSRI's exacerbating Dystonia? I have to ta...

pepper7172

•1 year ago

7 Replies

Dystonia and memory loss/ cognitive functoning

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...

Hi I know that dystopia doesn’t tend to affect cognition or memory, but I have i...

Maisie2016

•1 year ago

10 Replies

Specialist help please

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...

I live in Manchester in the UK happy to travel but would like advice on speciali...

Avamia94

•2 years ago

1 Reply

Mandibular dystonia after stroke

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...

Hi - I have a form of dystonia which makes my jaw clench. It's worse at night. I...

Gilldy

•2 years ago

7 Replies

Cervical collar

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...

Can anyone recommend a soft cervical collar which does not come into contact wit...

CDSux

•3 years ago

6 Replies

Severe shoulder pain after Botox

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, has anyone experienced severe shoulder pain following Botox? I have cervical...

WillyWonky

•3 years ago

3 Replies

IOM treatment availability?

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...

Hi, We are looking to relocate to the IOM for work purposes but I can’t seem to ...

Ali_H

•3 years ago

Be the first to reply

Functional Cervical Dystonia ???

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

Does anyone have Cervical dystonia like symptoms that have been identified as be...

PrincesspreRaphaelit

•3 years ago

21 Replies

Respiratory Distress in Dystonia

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

Found this bit on a website and wondering if anyone else besides me experiences ...

rideabike

•4 years ago

25 Replies

Can Cervical Dystonia cause Rotator Cuff Tears

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...

Hello, I was diagnosed with right sided cervical dystonia in 2018. I have been ...

HKAnne

•4 years ago

9 Replies

Life has become unbearable

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,...

Please help me. The cervical dystonia pain in my neck is becoming truly unbearab...

Whitefooted

•4 years ago

28 Replies

Cervical Dystonia/inner ear links

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...

Hello all My sister was diagnosed with cervical dystonia 10 years ag and has 3 m...

smilingjane

•4 years ago

8 Replies

Does Artane work for anyone?

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! Just wondering if anyone here is using Artane for their Cervical Dystoni...

orth1998

•4 years ago

1 Reply

What medications work for your ST?

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...

Hi All! I have just joined, but I have had ST diagnosis March, 2019. However, wh...

orth1998

•4 years ago

4 Replies

New to cervical dystonia

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...

Diagnosed with this condition 9 months ago, struggling with accepting it. I h...

Dennis2019

•4 years ago

3 Replies

Help with Cervical Dystonia please

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, I was recently diagnosed with Cervical Dystonia after being unsuccessfully t...

Wizardsmom

•4 years ago

34 Replies

Mirtazepine

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.

Hi everyone, does anyone have experience of taking mirtazepine and was it helpfu...

Bellybob

•4 years ago

3 Replies

DBS - deep brain stimulation for Dystonia

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...

Has anyone on here experienced or has DBS plz - I know mainly it’s for Parkinson...

Toto88

•4 years ago

5 Replies

Recently diagnosed Dystonia

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...

Can anybody plz help me with advice - I’ve been recently diagnosed with dystonia...

Toto88

•4 years ago

13 Replies

Treatment due

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...

Well I’m due to go to the eye clinic in 10 days time for my blepharospasm treatm...

Ali_H

•4 years ago

5 Replies

Coronavirus

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

Gareth78

•4 years ago

2 Replies

Medication for what?

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...

After years of complex issues and knowing we can send satellites into space find...

123geoff

•4 years ago

5 Replies

Head and Neck Tremor (External and Internal) with Dystonia

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...

My initial symptoms started with balance issues. The way I would describe it is...

Yrrek

•4 years ago

12 Replies

Cervical Dystonia and Exhaustion

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...

Cervical Dystonia and Exhaustion Please can anyone tell me about their experien...

Rkai

•4 years ago

6 Replies

Factors and actions that make your dystonia symptoms worse or better.

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, Will you please share info on what makes your dystonia better or worse...

AlecB625

•4 years ago

9 Replies

Medication for Dystonia - what drug improves your dystonia symptoms?

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 )....

Dear All, would really appreciate if you would share your experience in medicat...

AlecB625

•4 years ago

5 Replies

New to this forum and loaded with questions??

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...

I was diagnosed with dystonia but the GP never told me so I learned about it jus...

rideabike

•4 years ago

4 Replies

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Posts - Dystonia Society | HealthUnlocked

Dystonia Society

Swollen muscle

storms

Do anyone get triggered by by other things not just involuntary movements?

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

Dystonia and memory loss/ cognitive functoning

Specialist help please

Mandibular dystonia after stroke

Cervical collar

Severe shoulder pain after Botox

IOM treatment availability?

Functional Cervical Dystonia ???

Respiratory Distress in Dystonia

Can Cervical Dystonia cause Rotator Cuff Tears

Life has become unbearable

Cervical Dystonia/inner ear links

Does Artane work for anyone?

What medications work for your ST?

New to cervical dystonia

Help with Cervical Dystonia please

Mirtazepine

DBS - deep brain stimulation for Dystonia

Recently diagnosed Dystonia

Treatment due

Coronavirus

Medication for what?

Head and Neck Tremor (External and Internal) with Dystonia

Cervical Dystonia and Exhaustion

Factors and actions that make your dystonia symptoms worse or better.

Medication for Dystonia - what drug improves your dystonia symptoms?

New to this forum and loaded with questions??

Search posts

Pinned Posts

Latest poll

How well do you feel your dystonia has been managed over the last year?

Topics

Archive