New member revredhead

[Revredhead]

I AM NEW

Hello everyone, I was diagnosed with dystonia in early 2017, i had never heard of it before. I have two types of cardiomyopathy which was discovered when i collapsed at work, then my left side weakness and tremor (mainly head, neck, speech and now swallowing along with voice loss). I suffer with rib pain and left side neck spasm. I use hot water bottles, Reiki healing and was considering if acupuncture would help? as i take a lot of tablets already and looking for alternative ways to help.

I have not had any support apart from trying to find out on the internet. I do not understand fully what is happening, its very unpredictable and the neurologist has not explained what could happen.

[rtn3421]

its not easy, once you get diagnosed\treated were left to just get on with it, it seems .... . I believe acupuncture can help with stress related problems, not sure if it would help with dystonia. For me, any physical object near my head reduces my dystonia so wearing hats, scarfs, neck pillows etc all provide various level of relief to my neck spasms.

[Revredhead in reply to rtn3421]

Thank you I am just looking for anything that might help I suppose. Acceptance is hard when it keeps changing.

[skymax]

It all sounds quite traumatic and confusing. People have different types of dystonia and different experiences, but i think the main thing from your post is the fact that you don't understand it and that the neurologist hasn't explained it. While the alternative therapies may help, I think you need to go back to your GP and/or neurologist to get more information. It might also be worth getting hold of your medical notes, which are sometimes a bit more detailed than what hey say in conversation to you.

[Rkai in reply to skymax]

Such a helpful professional response. Also the dystonia society do have some leaflets on all aspects of the condition. However as you say it's very specific to the type you have and your individual symptoms.

[Revredhead in reply to skymax]

I have been to my GP a few times and they say see the neurologist. Who when I asked advice about the choking said.... Do not eat or drink whilst you tremor. I need help in what to do, to help myself.

[Chumpschimps]

My daughter has Dystonia and finds heat and cold can both help at different times, depending how she’s feeling.

I’ve got different health conditions and use electric heat pads instead of hot water bottles. They stay at a constant heat so I find them much better. There’s quite a few available if you look online, or I can tell you my favourites if that helps - I’ve used them for about 7 years and tried lots of different ones 😁

[Revredhead]

We are definitely on the same page! Would be good to chat.