Blepharospasm Bulletin Board

eye closure question
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Posted by: pdb
03/11/2004, 20:29:42


I'm trying to understand whether the eye closures I have are typical BEB, are apraxia, and typical for other folks, and I decided I was a little confused by various info picked up on the board and elsewhere. Hence my question:
is eye closure usually associated with a spasm, i.e. a strong contraction of the muscles that forces the eyes closed and then holds them there? Or do they just quietly want to close and like to stay that way without the provocation of a spasm? The latter is my main circumstance; I have much less spasm driven closure, but they still prefer being closed to open. I can open them easily enough but give them a few seconds on their own and theyre closed again.

If one is on botox and its working, is this condition helped? Im on tetreabenazine, and while that reduces spasms, it does nothing for the closures.

Thanks for any insights you may have

Peter




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Re: eye closure question
Re: eye closure question -- pdb Top of thread Archive
Posted by: myrna j
03/11/2004, 20:42:19


Hi Peter,
My apraxia was just as you described yours. The eyes just quietly closed and I was unable to open them for maybe 5-15 seconds, or until I opened them with my fingers. I did not feel a spasm prior to their closing.
I was receiving Botox but it did not help the apraxia. That's when I decided to have the myectomy done, and that has solved the problem. The relief has been wonderful. I have not tried oral medications.
It is a very frustrating problem, for sure!
Best wishes!
Myrna



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Re: eye closure question
Re: eye closure question -- pdb Top of thread Archive
Posted by: Peter from Brisbane
03/12/2004, 04:03:54


Hello Peter,

I have exactly the same symptoms. I have strong spasms and blinking which usually occurs indoors. Botox has this part under control. I also have the eye closing issue -usually outdoors in daylight hours and almost always when I drive. The Botox does not do anything for this.

I have got some sunglasses with FL-41 lenses and these do not seem to help either. My optometrist is currently experimenting with adding different colours to the lenses. I will see how this goes.

The funny thing is that I can sit in front of a computer (notebook with LCD screen) under very bright lights all day long and this does not usually bother me, but as soon as I go outside - even if it is quite overcast, my eyes just start closing. The closing is not in the form of rapid blinking or strong spasms , but the eyelids just get real heavy.

So it would seem to a layman, that certain types of light ( particular wavelengths perhaps) just irritate my eyes whereas other bright light does not bother me at all.

I am seeing my doctor for botox on 5th April. I will ask him about apraxia then. I get the impression that I can't do much about this except the myectomy - but this seems like such a drastic step!!

Hope this helps.

Peter




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Re: eye closure question
Re: eye closure question -- pdb Top of thread Archive
Posted by: Ann Doyle
03/12/2004, 13:04:53


Peter, your eye condition of closing and staying closed or just wanting to be closed describes my condition and Botox does help me but only for 5-6 weeks . Then it wears off. I also take meds, which vary. Seems like I get used to one and then it won't work and I'll have to try something else. Ann Doyle



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