Dystonia & eye twitch

[Laul115]

Hi all, only joined this forum yesterday as I'm looking too seek some advice.

I have had dystonia since I was a teenager, the dystonia is in the right and left arm and both hands, which makes it very embarrassing for myself.

So ten weeks ago now my right eye lower lid started to twitch and will not stop 🙁 And for the past few weeks now just under my right eye brow has also started to spasm? It's not a twitch and more a muscle spasm this don't hurt but is very annoying and think that people can see this and I'm getting paranoid about it now.

This morning my left eye lower lid has started to twitch, I feel like I'm going out my mind and it's causing me great anxiety, has any body else had this?

I saw the eye doctor and they said the only thing is to treat this is Botox and it's not a route I want to go down as I have read way too many horror stories on having this done due to a droopy eyelid etc etc.

So I'm just looking for some kind of support or advice before I loose the will to live.

Can I also mention I suffer with trigeminal neuralgia and currently take amitriptyline and gabapentin for this, I don't take anything for the dystonia as again the doctor said Botox would only really work to stop these tremors.

Thank you for taking the time to read my long boring status.

[MylittleBrody]

Hi Laul115,

I have very similiar symptoms as yourself which started about 2 years ago. It started with my left eyelid twitching which i thought was due to being really tired, until the twitching got worse. My doctor at first thought is was Bells Palsy but i could do all the facial excercises. He eventually referred me to a neurologist when the left side of my mouth was also starting to twitch.

I was diagnosed with blepharspasm, eye dystonia and Meige syndrome earlier this year but now I am getting arms, legs and back twitches which move to different areas within seconds, which only happens when i am sitting or lying in bed. I have an MRI scan on the 20th September and I am seeing my neurologist on the 28th.