Treatment experience anyone?: Hello... - Dystonia Society

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Treatment experience anyone?


Hello everyone!

I’m new here!

I was diagnosed with cervical dystonia march 2016, which has wrecked my life ... I know you’ll understand, which many don’t of course! I have a wonderful neurologist but the btox has not worked yet in two years of trying. I spend a lot of time researching on pubmed and have come across two protocols - high dose thiamine hcl (vit b1) which is also something that may help with parkinsons; and occlusal support appliances. Does anyone here have any experience of either of these?

Look forward to hearing!

Onwards :-)

8 Replies

Welcome friend :). Unfortunately I have not heard of those treatments, but if u read my prior posts in this community and Pain Concern.. I tell what has saved me.. for treatments. Hope it helps.

Thank you Hippo love!

Hi - welcome! I am sorry to hear you have to deal with this sh*t. That is really the best thing I can call it and I know everyone here understands. I have CD as well and use thiamine. I cant remember exactly why I started other than I read elsewhere someone was trying it maybe?

Anyway, what dosage does the article recommend? I think at one point I was doing 500mgs and recently have been doing closer to 350/400 only because I am finishing off an old bottle. Cool thing is - it really DOES seem to help. From the research I have done, thiamine can be a little powerhouse for the nervous system.

I notice when I take thiamine and flax seed oil (mixed with peanut butter and banana) daily like I should, the spasms are less severe. Magnesium is a fav as well.

I recently cut meat and coffee almost completely (still do some fish). Have been sticking with a mostly veggie macro focused diet and no caffeine or refined sugar. This combined with the above supplementation is helping. I also do curcumin, hibiscus flower tea, laser therapy focusing on central nervous system and grumpy neck muscles, coffee enemas and CBD oil. I have heard CBG oil is even more helpful to the nervous system than CBD but it seems hard to find? I do vit-d also because it is cold and dark here in the long winter.

My general focus and goal in any supplementation and diet choice is to reduce inflammation and nourish the nerves. I do receive botox and take a very small dose of artane but they are hit or miss on effectiveness which is super super frustrating. I also have been researching diet and absorption of serotonin, dopamine and GABA through the stomach and how to potentially increase absorption of these through diet and supplementation.

Anyway, was excited to see thiamine on here and would love to hear more details on what you found! Like I said I do notice a difference when taking it as I should. Hang in there!


in reply to talynn

Dear Talynn

Hello and thanks so much for the suggestions l.l some I have trid, but some not so very interesting. I posted some links to studies, but also if you google Dr Constantini high dose thiamine, or look on the Oarkisnons health unlocked site there is lots of info ... ine one study of thiamins and dystonia the dose was 4 g per day supplements, the other was by intramuscular injection and that was 100mg twice per week. So very high!

I have been trying the oral doses at varing levels and am feeling it is helping ... this route apparently takes 3 months to kick in. And have ordered im vials from Germany to try - first injection next weekend.

I also spoke to my neuro about it all and sent her the articles and awaiting her response. Because my GP said if the neuro aigns off on it, the practice nurse can give me the im injections rather than me doing it myself.

I will keep you posted! It is good to be able to talk to people about all of this! I have been a social media refusenik until very recently and am now beginning to see the use of it!

Have a great weekend, Talynn :-)

Sorry for the bad grammer. I meant to say ..

Thanks for the suggestions. Some I have tried, but some not. So very interesting!

Hi Lucybarker,

I have Wear and tear of the cervix in my neck and dopa responsive Dystonia.

My neck causes me a lot of problems, my neurologist has put me on Pregabalin (Lyrica). I would try vitb1, but would ask your neurologist before using a neck brace until you really need it as I have thought about it myself, because of losing muscle and becoming reliant on it. I know I will need one in the future to support my neck and to stop my spine feeling like it's being crushed as I have a fractured spine and severe nerve damage for 8 yrs and used sticks till I couldn't because of the crushing sensation and now have a wheelchair.

Hope this helps and good luck.

in reply to Dizzy64

My husband developed dystonia after taking Requip. Look into your medication history and see if any changes occurred after a change in your meds. Please read my post if you have.

do you know if you can trace your dystonia back to any change in medication. I am trying to locate people that have taken requip or medications in that family. I am trying to get some information so others can be help. Please read my post.

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