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

Dystonia Society

604 members192 posts

Just need a little help

Ellie97j profile image
1 Reply

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 😊

Written by
Ellie97j profile image
Ellie97j
To view profiles and participate in discussions please or .
Read more about...
1 Reply
Laul115 profile image
Laul115

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

Not what you're looking for?

You may also like...

Just saying "HELLO".

Hi just wanted to say "Hello" , I'm new to this . Been diagnosed with spasmodic dystonia of my...

Recently Diagnosed

Hi All, I was diagnosed with Cervical Dystonia in March. I feel I've had dystonia maybe since I was...
WillyWonky profile image

Help

Hi I was diagnosed with dystonia a few years ago and am still being told. It's on my head and their...
Toniavis profile image

Life has become unbearable

Please help me. The cervical dystonia pain in my neck is becoming truly unbearable. I refuse to...
Whitefooted profile image

Living with extreme Cervical Dystonia

Hello friends...I’ve had EMG and every medication under the sun, including liquid morphine. I...

Moderation team

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.