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Ataxia Support

Explaining Dystonia

This is a good article. I have some dystonic posturing of primarily my left (dominant) hand—like severe writers cramp, often when I’m trying to grasp a knife handle. Momentarily quite painful and frustrating, but so far I can usually get the muscles to release by using the other hand, or changing positions/ stretching if it’s somewhere else. My little finger aches a lot of the time now.

:thinking: I have similar problems with my right hand. But since arthritis has been confirmed in my arm, I’m unsure if it’s dystonia. I’ve seen posts recommending Botox.

Try taking CBD oil. It helps

Try CBD oil or lotion it helps.

I had been given Botox shots in my arm, before I was diagnosed with hereditary SCA. Isolated dystonia may benefit from Botox injections. But when it is a part of hereditary SCA, I don’t think Botox helps.

Makes sense. Should look into CBD lotion, as diclofenac cream helped arthritis pain before I had my knees replaced.

:slightly_smiling_face: We shouldn’t dismiss Botox, it can give very good results no matter what type of ataxia is diagnosed, as with all other medications it can very much depend on the person. I know of someone with SCA6 who has regular shots of Botox for Dystonia, Botox only lasts 3mths.

Botox changed my sons life several years ago now. He had chronic daily migraines for years, and botox injections stopped the cycle when nothing else could!! I wonder where they inject when you have dystonia in different places—start with the worst ones, I suppose?

I must agree with you that Botox can help with Dystonia in some people when injected in the right place. I should say that it didn’t help me at all with my Dystonia that came with SCA 6. May be I had high expectations.

:thinking: I was given a Botox injection because of double vision. This can give good results by tightening the eye muscle, but it didn’t work for me and I went on to have Strabismus Surgery. Although I would try Botox again if it was thought there’s a possibility it could help with a symptom.

:+1:Thanks. I hope they come up with some successful trials for SCA

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How do you know how much of the oil/tincture drops to start with?? I keep searching the web but haven’t found anything yet. I know it doesn’t make you ‘high’, but how do you know you have enough?? Can you tell I’m a novice?:wink::wink: At least it’s legal now in Canada!

:slightly_smiling_face: You might find this link helpful. If you can get a prescription for Medicinal CBD it’s likely to be more ‘potent’ and is said to give better results.

Good to know. Will ask my doctor about it.