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TOPIC: A 'Backwards' Case of Dystonia?

A 'Backwards' Case of Dystonia? 3 years 8 months ago #3079

  • lorensul
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I have what amounts to an "inverse" case of cervical dystonia. At least, I think that's what it is. Unfortunately, I live in Eastern Europe where medical care is not on the level it is in America or Britain. So my hope is that by describing my symptoms, some of you on this board may be able to tell me whether it indeed sounds like cervical dystonia, or something else.

It began almost 2 years ago and was only noticeable when I lay on my left side in bed. My head began to "shake" but only when I was lying on that side. If I switched to the other side, no problem. If I lay on my back, no problem. And I had no cervical dystonia symptoms of any kind when standing or sitting. After about nine months, the head/neck tremor began to be present when I lay on my right side, as well. At this point, it became apparent to me that the "tremor" was actually a byproduct of the fact that my head wanted to turn – on its own – to the right. This was true no matter which side I lay on. Then, in approximately another month, the problem had extended to include lying on my back, too. But still no issue sitting or standing.

Most recently, within the past month or two, it is present on a subtle level when I am sitting and standing. If I'm active – driving a car, working intensively – I don't notice it. But if I relax for a moment, it's there. So the problem seems to have followed a course that's the reverse of what's normal for cervical dystonia, where I understand most people are initially able to gain relief by lying down and resting their head, and that eventually becomes difficult only in a minority of cases.

A couple of notes: I don't discount a psychological basis for this. Although the initial problem lying on my left side came on entirely by itself, it started on the right side pretty much immediately one morning when I tried to figure out "What am I doing differently when I lie on this side versus that side?" And similarly with lying on my back. And finally, I have very noticeable pain and some restriction of movement down into my left shoulder and arm and stiffness in my neck every day.

Does this sound like what you all suffer? I'd be very grateful if somebody could tell me if such a "reversed" course of symptoms like this sounds familiar or possible for cervical dystonia.

Thanks, Loren.
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A 'Backwards' Case of Dystonia? 3 years 8 months ago #3080

  • Deckland
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Hi lorensul, can I say up front I'm no expert on dystonia, I have lived with it for 13 years and I can talk about that.
If your head wants to twist when it should be 'relaxed', that does sound like dystonia.
As there are many different types I wouldn't be comfortable even guessing. I'll leave that to others with more knowledge.
I just wanted to point out that when resting your head to sleep, it can be the worst time as the dystonia twists the head and doesn't stop until you fall asleep.
I sometimes think it's trying to smother me by forcing my face into the pillow. It hasn't got me yet but you gotta keep an eye on the bugger. :P
Hope you get the info you're looking for.
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A 'Backwards' Case of Dystonia? 3 years 8 months ago #3081

  • lorensul
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Thanks for your input, Deckland. The sleep part is definitely the most agonizing to me. Like I say, that's what came on first -- and it's still very much an issue. Some nights I get three hours sleep because of it. Very good nights I get six. The problem is, once I'm conscious for any reason, I can't get back to sleep. I get exactly the same bit with my head trying to smother me in the pillow :) But I'm still curious why this came on in 'backwards' order from the way everyone else gets it. And whether there's a mental component involved.
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A 'Backwards' Case of Dystonia? 3 years 8 months ago #3102

  • jlees
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Hi Lorensul, the phenomenum of head shaking when lying in bed finally prompted me to seek help. I was suffering with neck Dystonia for some time before it was diagnosed. Any situation when I had to be still like, lying in bed, hairdressers, optician, dentist was very embarrassing for me and I dreaded going. Sitting still at the theatre required me to prop my head up with my hand. For the moment Trihexyphenidyl is helping with this. Botulinum injections helped at the beginning but don't seem to anymore.
I'd say that my situation is very similar to yours and that yours is not unusual.
I hope this helps.
Jenny.
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A 'Backwards' Case of Dystonia? 1 year 11 months ago #3824

  • rka
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Hello Lauren
I was veryi interested in your message. Yes I recognize yours symptoms. I have cervical dystonia and my muscle spasms only show when I relax my muscles. My head shakes and turns to the left. Big problem trying to sleep. The result is that all my muscles are taut automatically fighting the spasms. This is very exhausting and debilitating. I am so amazed for I have been trying for so long to find anyone with similar symptoms. I had to find diagnosis myself on the web before any professional said I had dystonia. I am constantly searching for anyone who can give more answers. Thank you for your message....would be glad to know more about any treatment that works or from anyone else out there who recognizes these symptoms.
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A 'Backwards' Case of Dystonia? 1 year 10 months ago #3853

  • rka
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Please - is there anyone else out there who thinks they have 'backwards' cervical dystonia? It is characterised by spasms taking place when the muscles relax.....I would find it so helpful to have any information as the worst part of this type is no-one seems to recognise it or know what to do with it....thank you
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