Medication for Dystonia - what drug impro... - Dystonia Society

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Medication for Dystonia - what drug improves your dystonia symptoms?

AlecB625 profile image
5 Replies

Dear All,

would really appreciate if you would share your experience in medication and doses.

I have so far only tried Trihexyphenidyl ( max dose 18mg/day ). I ended up with excellent night sleep, but also with blurry near vision (which means it did work to relax eye muscles) , tinnitus, and weird panic attacks. And most importantly - no real difference to dystonic spasms.

Thank you

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AlecB625
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5 Replies
ITGuy1 profile image
ITGuy1

I’ve only tried botox, and it has helped a good amount.

You have to find a neurologist that specializes in botox treatment for movement disorders however for the best results.

timgann profile image
timgann

Alec, This is the drug you are usually started on. It had horrible side effects on . me I tried other meds with no benefit so botox is the treatment of choice. Discuss other meds and botox with your neurologist as something might work for you. Treatment for dystonia is very individual

Medical marijuana has made a huge difference in my Dystonia.

LewesGuy profile image
LewesGuy

Botox works wonders for my cervical dystonia. In the past, I used Artane (trihexyphenidyl). However, this drug gave me terrible side effects, although I used it for a year or so.

I started on Primidone but was unable to function as I experienced all the side effects.

I have just started botox and have only had two sessions.

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