Benign Essential Blepharospasm

gibby2015January 26, 2006

Do any of you know of anyone who has this condition? It is a rare neurological disorder where you have spasms in the eyelids that cause them to close uncontrollably.

A friend of mine was recently diagnosed with this and it has been pretty devastating so far. I was wondering if anyone has known anyone with this, if they were successfully treated, and how they coped with the whole ordeal.

It's the kind of thing that when you hear about it, it quickly puts your problems in perspective if you don't have any that are really all that serious.

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pecanpie

gibby, I passed over reading this thread initially- I thought it was another funny one because of the name- but there's nothing funny about that condition. I have never heard of it! Have you checked out the Mayo Clinic or Scripps websites?

Bless her heart- and yours, too for being such a concerned friend. I'll dig around for info...

    Bookmark   January 26, 2006 at 9:21PM
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pecanpie

Apparently, Botox provides some relief for many patients. Has her doctor mentioned it?

Here is a link that might be useful: info on BEB

    Bookmark   January 26, 2006 at 9:32PM
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gibby2015

Thanks for this info Pecan! She is trying the Botox injections now. The first round didn't help much - the second round helped some - but now one eye is stuck partially open. This is apparently a potential risk of too much Botox - so it sounds like a fragile balance of giving enough/not enough of that stuff.

She did express a ray of humor - at the benefit of now having no wrinkles on the forehead. I cannot imagine how devastating it must be to have something like this happen - in the prime of your life. YIKES! I would like to find someone who has dealt with this successfully and continued to have a productive life - to give her a ray of hope.

    Bookmark   January 27, 2006 at 11:07AM
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mlaj2000

Is she seeing a neurologist. I know someone who has trigeminal neuralgia. It causes severe, painful spasm in the face along the trigeminal nerve.
They are treating her with epilepsy medicines like neurontin to calm the nerves.
She might want to talk to her doctor about this type of medicine, you never know. BTW

    Bookmark   January 27, 2006 at 12:45PM
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gibby2015

mlaj - thanks for that info. She has seen a neurologist who recommended some type of medication. I'm not sure exactly why she didn't go that route but it had something to do with low success rate for this type of condition along with potential side effects of the meds. It's interesting to hear about the success of the person with the trigeminal neuralgia though.

I think that's a good point about a neurologist. In reading a little more about this it seems like the real experts are neurologists - not ophthalmologists. She is seeing an ophthalmologist now who has some experience with this condition - trained by others at Mayo who are supposedly experts. If things don't improve I think maybe she should find a neurologist who has significant experience with this disorder - or I guess there are even neuro-ophthalmologists.

Having had some unusual medical disorders, I've become accustomed to seeking out the best medical care available - no matter where it is. I don't think she thinks this way and it may be that the answer is out there - just not in her neighborhood.

Here's an interesting piece of info I heard recently - I didn't see the actual research proving this - but I consider the source reliable.

From the time a new medical treatment is scientifically proven effective, it takes on average 17 YEARS before it becomes the "standard of care". So if you or your doctor don't seriously investigate what's been discovered recently, you have a good chance of missing out on something important for 17 years - give or take.

    Bookmark   January 27, 2006 at 3:17PM
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mizsnooks

I just found this thread by accident, but yes, I have a friend who has bleph and is continuing to teach at a university. She gets botox injections on a regular schedule (everything depends on who gives the injections, so you need someone really skillful) and her biggest other problem is light. She wears shades, changes the light bulbs in her classroom and no longer does things like go to the beach. She went to a national conference on bleph that features leading researchers and people from NIH - very interesting.
You're right, you need to go to the best possible people you can find. Driving is also a big problem, which can have a big effect on your quality of life.

    Bookmark   January 7, 2007 at 11:09PM
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gibby2015

Mizsnooks - thanks for posting this info. My friend has since found a new physician at a major university and things are going better - she is getting the botox injections. Apparently it's going much better with the new and better doc. She said she has also found an online forum of people with this condition which has been very helpful in terms of practical advice about how to deal with this. It still just amazes me though - the things that we could have go wrong with us. We really need to appreciate and enjoy each day - you never know what you could be dealing with tomorrow......

    Bookmark   January 8, 2007 at 5:05PM
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