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TOPIC: Many questions

Many questions 2 years 8 months ago #3586

  • Jones100
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Hi, I found this website when doing some online research as I was diagnosed with spasmodic torticollis very recently. I have many questions and should do more research. I will do but I am finding sitting at a computer to be extremely uncomfortable. Unfortunately I have to work at a computer so I have to limit my computer reading time outside work. Sorry if I am asking questions which are discussed already in this forum.

I am working overseas and thinking about returning to see my NHS doctor. Is botox treatment available on the NHS and would I have to wait a long time? I tried acupuncture and physiotherapy but although they felt good, they did not really address the problem directly enough. I saw something on youtube by a chiropractor who claimed it can be solved in a month or so. If only that could be true. Any thoughts on chiropractors vs. osteopaths? I am already wasting a lot of money experimenting with chairs and desks, different treatments, tens machines etc. I heard mixed things about memory foam pillows including a yes by one physiotherapist and a no by another. Is a neck brace going to help me at my computer? I tried making ice bags with ice cubes which helps a little bit, but it’s not very convenient. What about electric heat packs? For example www.sharperimage.com/si/view/product/Cor...y+Wrap/202364?trail=

Is going to the gym or jogging helpful on days when I feel up to it, or should I try anyway or can some type of exercise be damaging. How about pilates or yoga? And what about nutrition and food types. I am a vegetarian but have considered eating meat again if it might help. What about coffee or alcohol?

Any advice would be appreciated. Thanks.
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Many questions 2 years 8 months ago #3601

  • yvoaus
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Hi, Yes botox is available on the NHS, depends on the area as to how quickly you are seen. This is given 3 monthly.
Yvoaus
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Many questions 2 years 8 months ago #3604

  • Jones100
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Thank you Yvoaus. That's very reassuring to know.
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Many questions 2 years 6 months ago #3653

  • Nic6765
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Hi,
I think trying different things to help with dystonia is trial and error as we find some things that help some of us doesn't really help others. I have regular physiotherapy and acupuncture, it does give me short term relief but won't stop the symptoms completely unfortunately, plus a combination of medication. I used to have Botox through the NHS but it no longer helps me but know it can benefit many others. I have a soft collar that does help prevent my neck getting too stiff travelling etc and I use wheat bags most days. Exercise makes my dystonia worse and was advised against Pilates and yoga, I did want to try and did a small amount of yoga but it did irritate my muscles considerably. I do try and swim regularly but if I overdo that I get worse, I have to be quite strict with myself how many lengths I do, I try and keep my head under the water as long as possible so that I don't irritate my neck.
As I said earlier, it really does seem to be trial and error to find what helps as dystonia is so individual to each one of us that has it. Good luck and hope that you find solutions to help manage your dystonia
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Many questions 2 years 3 months ago #3718

  • Jones100
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Hi Nic6765,

Thanks for your comments. I didn’t check here in a long time so I’m sorry for this late reply.

What kind of physiotherapy do you have? I have tried several physiotherapists and each has been quite different.

I don’t understand what you mean by “wheat bags”?

I tried swimming but I’m not a strong swimmer and need to learn (rather than having my head out of the water). It felt good to swim but I ached a lot that night.

Thanks again.
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