Dystonia Society

Lou's introduction

So glad to find dystonia society on heath unlocked

I've been suffering with dystonia majorly since 2012

I as I now know it have generalised dystonia.

It started with a tremor, I am particularly suffering with cervical dystonia (spasmodic torticollis) for which I have been having botox injections at charring cross every 3 months to stop me looking like the exorcist.

My hands cramp and claw up which makes alot of daily tasks sometimes impossible

My left foot and leg join in on occasion making walking / standing challenging all of which comes in episodes but I find my twisty torso currently to be really disabling.

I take trihexiphenydle, pregablin, clonazepram.

My dystonia was apparently caused by an autoimmune disease called antiphospholipid syndrome which as it took so long to diagnose damaged my brain leaving me with dystonia, Chorea and a painful involuntary movement disorder.

I am now a warfarin Lifer due to this.

Over the last 4 years my life is now unrecognisable, not working or driving anymore and I've become extremely reclusive avoiding everything.....

Boy I sound depressed but I'm having one of those pick and mix days thanks to dystonia you just don't know what your going to get that day

Thanks for being here


11 Replies

Hi LoopyLou,

Glad you found us even though we are not a particularly active group at the moment.

It sounds like you've had a rough journey so far... hopefully the next couple of years it will settle down for you and you'll feel less isolated.

I don't know if you've looked for financial support and personal support elsewhere but as your autoimmune condition has left you with an acquired brain injury and disability difficulties you should be entitled to PIP allowance, dependinding on the extent of you your difficulties, and a group called Headway will be able to support you around brain injury stuff and applying for PIP (if this is all old hat to you sorry for the repeat!)

All the best


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Thanks Ali it's nice to know there are others out there

I never thought about headway before I shall look into it.

Lets hope this group picks up as it's so important to have some support even if it is on the Internet

What's your story?!

Lou x



Not much of a story really... Diagnosed with suspected RA in July 2014 by GP and confirmed in September by rheumatologist - no big surprise really as I had rheumatic fever as a teenager and knew 'rheumatics' when I felt it!

Eyes were thought to be connected through associated dry eye or sjogren's at first but when I finally got an ophthalmologist appointment in January 2015 dry eye not that severe and blood tests had already rules out sjogren's. She instantly said it was blepharospasm and not related to RA (as I had been rapidly blinking for some years prior and unfortunately grew into full blown blepharospasm at same time as RA). Work was a stressy leading up to both developing and probably contributed to both conditions becoming fully active around the same time. I teach special needs and still do (for now!).

The eyes are far more of a problem than the RA and its associated fatigue and frustrate the heck out of me at times! I got some new 'crazy eyes' glasses from Moorfields in May and they help also by taking care of some of the light sensitivity with FL41 filters and help steady the blinking down further with pressure point attachments on the side that press against my temples (sensory tic devices I think they are known as... definitely help anyway).

I see a good massage therapist who helps sort out 'knots' in my neck and shoulders which again helps greatly with the eyes - it's definitely not a relaxing massage but does the job very well. I also found sketching helps settle my eyes (never took to it until recently - shan't be selling any of my artwork any time soon!). Gardening also has the same effect.

All the best


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You do seem to have a handle on things good for you

I do the sensory tic things with my hand and when my hands get tired I have to put a neck collar on which reduces the head turning etc...it's funny the little tricks we find.

Your keeping yourself busy and positive and that's a fantastic tool.

I think your conclusion about work and life sressors is right on the money. I was working in the city in a career I loved when my symptoms began but I lived on stress.... I also have a son who's ASD, with many other labels to boot and believe all of these factors played a part.

I get ormandibula dystonia and suffered with bells palsy which makes me pull and gurn particularly at night so I can relate a little..

Keep up the positive vibes

I passed on the link for this group to all my dystonia fb groups etc so hope that others will find it... Fingers crossed

Here if you need me and thanks xxx


Hi Louise, I got notification of your post even though I wasn't in this group. Probably because we're following each other in the Sticky Blood group? Glad I saw this though, because I'm currently doing the rounds of testing and some of what you describe sounds familiar. I was diagnosed with chorea but am now being told its myoclonic. I have "folding" episodes, when laying or sitting upright my legs want to bend up to my chest! I also have seizure type episodes (conscious) when arms and legs flail and my body contorts. I wondered if it was related to INR?

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Oh minnime it's lovely to hear from you....I'm so sorry that you are going through this though.

My jerks have been called that as well at times particularly when I,ve kicked a few neurologists 😁 while testing me or injecting me....I don't like going on the underground either as I appear to elbow unsuspecting passenger's.....😁

I have to keep my INR between 3 - 4 or my symptoms do increase this is to keep the antiphospholipid syndrome dampened down. Taking hydrochloquine has also helped in that.

Unfortunately it hasn't fixed me as first hoped but in theory it should slow down any further damage.

Who's testing you and for what!? Neuros and or rheumatologists!?

What meds are you taking have you found any relief '?

Totally understand what your going through keep strong 💪 and here if you ever need to vent

Lou x


Just read your reply to Ali... omg! Stress! I had a high powered job, a cheating violent ex AND have a son with ASD (amongst other things!). It truly does play a part. I'm early stages.. saw Paul Holmes at Guys, who has referred me on for EEG and MRI (next week at St Thomas'). He's then considering referring me on to Mark Edwards at St George's as he thinks it may be functional? I'm seeing Prof Hunt on Tuesday and will talk about INR again. I definitely felt less jerky when it briefly hit 3.5. I don't know about you, but I do feel like the freak at a sideshow sometimes 😊

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😁 totally lol

try and keep those stress levels down....and look after yourself let us know about your tests etc. . They add to the stressors.i know ..but hopefully help you in the long term

Here if you need to vent ever love a fellow freak xxx


Hi Cheer up i know its shitty some times. I have Dystonia in my feet. I have had this for three years and Parkingson's for 11 years i sound depressing now LOL. If you want to talk i'm here.

Bye Niecy64


Hi am new to all this be nice to hear from people in a similer positsion.


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Hello how are you? Can I ask what medication you take?


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