Dystonia

[AgileGuide]

I have full body dystonia. I’m currently being prescribed diazepam, Parkinson’s meds and codeine for pain. Dr is also recommending Botox to stop muscle spasms. Anyone have experience of this? Are you on similar meds.

My little one has dystonia with whole body involvement, he's on trihex, baclofen and gabapentin with chloral hydrate for breakthrough. There has been talk of botox and I do know it has worked well for other people but he's fairly stable at the moment. It's a bloody awful condition

Hi I have dystonia, early onset and have done since I was a teenager. I don't take any meds now as they were making me feel worse, just pain killers. It means I can't walk very well but I am more "with it" and feel more like me. I've heard great things about botox for what it's worth and if I was going to do anything, I'd do that.