Blepharospasm Bulletin Board

Eye 'cramp'-is this dystonia?
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Posted by: bearlily ®
01/12/2006, 07:14:41
Hi, I have cervical dystonia (and udually post on the dystonia board) and recently started feeling 'tight' around my jaw as well. I am assuming this is also part of the dystonia, it is like my jaw is clenched and it affects speech , eating and swallowing, although it comes and goes. Some days I hardly notice it, other days it feels like my face is battered.

However last night I had a 'cramp' in my eye! It felt like the crapming I get in my feet and neck.
It was in the inside corner of my right eye (CD side) and affected the side of my nose as well. It was not the eye lid or directly under the eye, but in the corner and slightly underneath. It was extremely painful and my eye still feels 'not righ't today. Both eyes are hurting all around the eye socket and I'd rather keep them closed although they still ache closed.
Is this part of dystonia?

I have an appointment for my first botox injections in 5 weeks time for my neck. SHould I mention it then? I have not seen the neuro who is doing the botox, he is not my usual neuro (by usual I mean the one I've seen twice before!)

What do you think?
Many thanks
Sharon




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Re: Eye 'cramp'-is this dystonia?
Re: Eye 'cramp'-is this dystonia? -- bearlily Top of thread Archive
Posted by: Marilee ®
01/12/2006, 09:02:18
Hi, Sharon,
I also have CD, as well as Meige's (combination of
blepharospasms, BEB, and oromandibular, OMD).

Your trouble certainly sounds like OMD to me. It is
spasms of the facial muscles: mouth, jaw, nose, etc.
Mine started with it being hard to eat/chew certain
foods - actually anything that needed much chewing.
It also affects speech, because you cannot move your
mouth properly to enunciate. But Botox injections in
the jaw muscles really help me!

I never experienced the "cramping" near my eyes, but
some do. With my BEB, I have eyelids clamping shut,
so tightly you can't open them voluntarily, without
Botox. By all means, explain your symptoms to your
doctor!!! In fact, why not write them all down and
give him/her the written notes. They can keep them
in your record, and are more likely to consider them
seriously.

By the way, the OMD network are more likely to answer
on the Dystonia board. I don't think they monitor
this one. But several on this board have OMD as well
as BEB. That seems to be a fairly normal
progression of the focal dystonias.

Best wishes to you, Marilee in Indiana




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Re: Eye 'cramp'-is this dystonia?
Re: Re: Eye 'cramp'-is this dystonia? -- Marilee Top of thread Archive
Posted by: bearlily ®
01/12/2006, 16:37:15
Thank you Marilee. I have had little spasms and twitches on my face and under my eye for about a year (since CD) so I suppose it is a natural progression to more severe cramping and more persistent symptoms.
Please tell me where I will find the OMD network if you can.
Hugs
Sharon



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Re: Eye 'cramp'-is this dystonia?
Re: Re: Eye 'cramp'-is this dystonia? -- bearlily Top of thread Archive
Posted by: Marilee ®
01/12/2006, 21:19:43
I saw that you posted on the Dystonia board, and
they usually answer there. In fact Sparky posted
an appeal to them about your question. But Sparky
is experienced with OMD himself, and could answer
any of your concerns, no doubt.

The chairman of the OMD network can be reached by
e-mail if he's too busy to monitor the b.b.
His name is Larry Stahl, artscifi2@aol.com




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