hello im sorry to hear its effecting your eyes. i as well get what they call functional blindness i cab see but eyes refuse to open. i also get spasms in them which is one of the worse places to get them. i cant recieve botox do to a dfferent illness. i go see a new neuro next week. i plan on that being a topic of discussion. if i learn any thing ill let u know. if you find out anything please let me know. ive learnt a few sensory tricks but they dont alwats work.when i get a bad attack i try opening my mouth and make chewing motion and hum when there trien to shut. when they spasm i gently lay fingers over eyes and massage very gently. like i said dosent always help but if it helps once or twice its worth trien again. good luck. ill keep you updated on app. please do the same. what form of dystonia was you dx with. how long you had it.thanks and god bless you and yours

So sorry. I don't have dystonia that involves my eyes. I hope something helps. I don't know if I told you, but 2 doctor's have now said I do not have ms, Dystonia, and sarcoidosis. I still have a lot of lesions on my brain, unexplained. I hope you feel better soon.
Love, Angela

I'm sorry to hear about your problem. My dystonia is in my mouth and jaw, not in my eyes. I can relate to your confusion about whether it's the dystonia or something else causing the problem, and also your comment about the dystonia driving you nuts. My dystonia developed over a two year period, and since it was constantly changing it was hard to know whether it was physicall or psychological. My family and friends tried so hard to help, but ultimately just made me doubt myself and my doctors even more. My best advice is to read as much as you possibly can about your condition, and then find a neurologist who won't be threatened by the fact that you're an informed patient. My neurologist is wonderful, and we've tried a couple of different stategies that I've found through my own research. I also hope you're find a trusted friend or two who can empathize and truly understand. Feel free to write to me any time. Blessings to you.

Hi Aussiesue, Im sorry to hear you are not doing well with the eye situation. I don't have dystonia in my eyes, so I cannot give any info or help, just here as support for you woman.

I hope you and hodie2 can help each other in the future.

Hugs friend

This was by far the most unknowledgable dr ive seen.says dystonia dont exist beyond a jerk and release and any one who suppose to have it its a psycological issue not neuro i laughed and called and set up app with reg neuro. i was dx with torsion dystonia meaning its every were and it is so unpredictable and scary at times. im here for anyone needing to vent or talk. id love to share and learn more on this illness. so any one suffering any time fill free to message me

I went to Dr yesterday for 3 monthly botox & found out that it is also called "Hemifacial spasm & Blepharospasm" & gave me some brochures on it. more scary than anything - typical, but this time the Botox has worked really quickly.

Hemifacial spasm is a form of facial dystonia & is the medical term used to describe an involuntary contractiom of the upper & lower facial muscles,resulting in twitching of the face,
This mainly happens when blood vessels are not working normally & compress a nerve, but there could be other reasons.

That is only part of the brochure I picked up & thrn the specialist said that is what they are treating. There is probably lots more on line but hope that helps a bit.

New issue. Right eye closed & didn't open after Botox. essterday & day beforeleft yey partially closed .Today left eye almost closed & both blinking constantly.
Sorry typos & hope know what mean. I am in agony from that & ms bad.

PLEASE HAS ANYONE HAD EYE DYSTONIA OR KNOW ABOUT IT. I NEED ADVICE & HELP.

Recently dx with optical nystagmus associated with dystonia.ay mention to dr as a possibility

I also have it in my eyes, my shots are due at the end of the month but they are not working any more. I also have cirvical and my legs are starting to hurt alot dont know if its related. Time for some surgery, Thats on the agenda for the next meeting with the neuro. Kinda getting scared.

They are looking at ketamine infusion to help me & pain all over (ms too). Problem is there is a a long wait to get it done here. Been waiting almost 12 months now so when see pain specialist will be asking him to follow up & try to get it sped up due to recent hospitalisations etc.

Moudy, I don't know what "cirvical" is, but I am very wary of surgery at any time as have had so many surgeries I am very wary unless really needed.
I am sorry you are looking at leg surgery. I hope that if you have it, it works.
I am in such pain in the legs from ms that I use an electric wheelchair most of the time when we are out (or scooter).

My eyes are getting worse with right eye closed more than open & even the spray I use is not working any more. Now my left eye is starting to do the same thing & Botox isn't working either.

Thanks everyone for responses & the one's who have dystonia esp in eyes & others for caring enough to comment.

Hodle - I never did thank you for your ideas on treatment. I can't always do the mouth open/ chewing motion as ms stops me due to no/little movement, humming doesn't happen - again thanks to ms & throat swallowing/function levels a lot of the time. I have tried very little massage on eyes & it hurts big time. I can't stand the pressure.
I have been told I have got the eye dystonia but not any other name at all. I have had it for about 3 years, gradually getting worse. Now it is both eyes & I struggle to open them a lot of the time too. The last Botox didn't last long, Probably because I have had many hospitalisations since last September so hard for any to work really.
Hope yours has not got worse at all,

. how long you had it.thanks and god bless you and yours

I have finally been offered some help & thought I would share & see if anyone else has heard of it. It is a minor surgery where on the face the Dr does an injection into the nerve that connects from the eye down to the jaw line & stops the spasm dead & the pain in that side of the face.

It is a permanent one & your face on that side is dead to feeling pain.
You can still eat, smile etc, it just stops the the pain.

I was fortunate (?), if it can be seen that way to have a really bad spasm on the left side of my face which caused me to grab it & swear (LOL) while I was in the neurologist office. He saw how painful, often & disabling that was for me.
I don't know how long the wait will be but it is done in day or overnight surgery depending on how I go I guess.
I am just glad there is hope there.
It's weird as the right eye was the 1st one to go but when left side went it has been more painful from start & went right to jaw line instantly.

Just thought I would let others know of the hopeful treatment for at least part of it & to see if anyone has had it/been offered it or any feedback.
Don't wamt tp jump in if others have negative feedback or not lasting or anything or in reverse hopefully good please too.