Just need a little help : Hello (I'm fairly... - Dystonia Society

Dystonia Society

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Just need a little help

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Ellie97j

Hello (I'm fairly new to this) my name is Ellie last Christmas I was diagnosed with functional and paroxysmal Dystonia and have now been given treatment with Tegretol, it is still really early days but I just wanted to know if there is anything else out there for support? Or help with this as I think that may help me as I think I'm still processing my diagnosis and treatment at this time and I'm finding it a little difficult

Ellie 😊

1 Reply

Hi Ellie, I'm Lauren and suffered with dystonia since I was a teenager ( I'm now 37 ) I was only diagnosed not even two years ago with this, I suffer with both my arms and hands, this is highly embarrassing for me when eating or drinking in public, I was put on gabapentin which made no difference what so ever, and ive been researching for an alternative and thinking about CBD oil? I'm just trying to find out more about the pros and cons to this.

I know how frustrating this can be and very upsetting but you are not alone, we're all in the same boat as one another and I'm sure just by speaking to someone with the condition can give us some comfort hopefully.

Kind regards

Lauren

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