What medications work for your ST? - Dystonia Society

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What medications work for your ST?


Hi All!

I have just joined, but I have had ST diagnosis March, 2019. However, when I reflect back on when symptoms started, we are talking at least 3 years before that!

I have the classic Torticollis variety to the left. Im a month overdue for Botox thanks to bloody Covid. My head is on a MAJOR spin cycle today. I am getting my needles this Thursday. The pain is the worst it has ever been. Mental health is down the tubes, too.

Could anyone please let me know what medications have worked for them that have been successful at stopping any head pulling/turning?

Thank You!

4 Replies

Hi,lucky you getting your needles soon. I last had my botox in Feb. I am in Scotland and I am in agony, I have facial and neck dystonia and apart from Botox they will not give me anything else. I have had this for 7 yrs.. I wish I knew what I could do to stop the pulling apart from holding my head. Good luck,I hope others will have some help for you.

Hi So feel for you and hope the injections on Thursday help. This is such a complex condition with not much support or understanding.

I take clonanzepan but only a low dose. Also a low dose of venlafaxine which seems to give me a boost to keep fighting this condition. You could try Naproxen and also Movelat gel. Heat helps too more than anything. Hot water bottle, heat pad etc. Its so frustrating but try to lead a quiet life with no stress and try to just learn to let everything go. I find it's worse when you are trying to fight it and then all the muscles and body get tired and it all goes round in a viscious circle! Rest and sleep if you can keep still to do it lol!

You have to laugh or you would go nuts!

Love and Light and keep fighting!

Thanks so much for your reply. You have a very positive attitude & I need more of that.

Take Care


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