help


Posted by dennis boyles , Nov 04,2001,14:10   Archive
Hi. Is there anyone who can tell me in simple terms about Blether we have a family member who is apparently suffering from this and has recently had her eyes close. This is an attempt to get info as the last time I downloaded from the net all the details were taken by her doctor who did not seem to have any knowledge of this disease
thanx Dennis



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Re: help

Re : help --- dennis boyles
Posted by Lynn Yarbrough , Nov 04,2001,19:11 Top of Thread Archive
Hi, Denis,

I will try to help, as best I can. In what follows, "You" = the patient.

Benign Essential Blepharospasm (BEB) is a closure of the 'blink' muscles caused by a malfunction or misfiring of the 7th cranial nerve, the one that controls the muscles of the face. All of us blink, for perhaps 1/20 of a second at a time. BEB patients blink for many seconds, even minutes, when those muscles spasm under the influence of the faulty 7th cranial nerve. It makes driving a car a new kind of adventure!

BEB is rare, and many General Practitioners have never seen a case of the condition (although that is changing now, under the influence of the BEB Research Foundation.) It is frequently misdiagnosed, usually as psychsomatic ("What is it that you don't WANT to see?") or as dry eye etc., which is unrelated to BEB. I was misdiagnosed twice.

There are several treatments: several drugs, which you see references to in the bulletin board, are used -- I suspect Artane is most commonly recommended; Botulinum toxin injections (type A, BOTOX, or type B, MYOBLOC, are currently in use) are usually but not always effective and is the treatment of choice for most cases; accupuncture is frequently tried but usually ineffective. In addition, there are numerous "tricks" that people try to keep their eyes open, including singing, whistling, pinching the cheeks or eyelids, etc., and scotch tape on the lids, which are explained by the maxim, "Everything works and Nothing works".

All of the effective treatments are expensive and none is effective for more than a few months. This is an annoying, expensive, deeply frustrating condition that you simply must learn to live with, because (with rare exceptions) it won't go away.

To deal with the problem, you should get in touch with several groups of people: (1) The BEBRF, whose access data is available from this website; (2) A good opthalmo-neurologist, some names of which are available from the BEBRF on request; (c) This BB; (d) A support group, if you can find one. On top of that you must develop a good sense of humor and as stress-free a life style as you can manage, because stress, while it does not cause the condition, certainly aggravates it a lot.

Join the party. I've been a patient for over 40 years.

--- Lynn




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Re: help

Re : Re: help --- Lynn Yarbrough
Posted by Sally - in - Idaho , Nov 04,2001,23:06 Top of Thread Archive
Hi Lynn,

You did a great job of explaining in simplified language. Dennis should be off to a good start in finding some answers and helps with the blepharospasm merry-go-round.

Question: Since you have had this for so many years, I'm wondering if (back in the beginning) you had the same surgery that my mother had ... I've forgotten tonight what it was called, but it involved cutting the seventh cranial nerves near the ear lobes. Dr. Daroff told me this is no longer done as it was too often disfiguring. My mother swears by it (she had it done four times!) and was "cured."

Thanks.

Sally in North Idaho




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Re: help

Re : Re: help --- Sally - in - Idaho
Posted by Lynn Yarbrough , Nov 05,2001,16:46 Top of Thread Archive
>I've forgotten tonight what it was called, but it involved cutting the seventh cranial nerves near the ear <

IIRC, That's a neurectomy, and no, I haven't had one. I get my Botox shots every 6-7 months and live quite well with that.

My wife & I drove back & forth across the USA last summer, splitting the driving 50/50. Couldn't do that in 1989! When we had our 2nd child in 1964, my wife had to drive herself, in labor, to the hospital. I was there but not driving at all.

--- Lynn




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Re: help

Re : Re: help --- Lynn Yarbrough
Posted by Sally - in - Idaho , Nov 06,2001,21:18 Top of Thread Archive
Thanks for the reply, Lynn. I had thought that perhaps, since your BEB began in about the same time frame as my mother's that you might have had the surgery. It was the newest option offered at that time and expected to do great things. I hope Botox doesn't turn out to have been a failure also.

Glad that you can drive and enjoy life. I have a friend who just left for her home in Palm Desert (isn't that where you live?). We had been having such beautiful fall weather that she was reluctant to leave, but today's rain turned to chilly, wet snow for a bit so I'm sure she is enjoying your sunshine.

Sally in North Idaho




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Re: Snowbird blefros

Re : Re: help --- Sally - in - Idaho
Posted by Lynn Yarbrough , Nov 07,2001,09:34 Top of Thread Archive
Please ask your PD friend to get in touch with me, by email here or by calling (760)360-4006 -- I would like to get acquainted with all the blefros in the area, and they by the way are suddenly appearing from all directions, so maybe we'll have another support group meeting soon (I'm currently aiming at January).

--- Lynn




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Re: Snowbird blefros

Re : Re: Snowbird blefros --- Lynn Yarbrough
Posted by Sally - in - Idaho , Nov 07,2001,13:12 Top of Thread Archive
Lynn, I guess my post was confusing as neither of these people are "blessed" with BEB. You might, however, enjoy meeting them. They are approximately your (our) generation and are retired from Spokane. Their main interest is golfing.

Do you still want me to give them your phone number?

Sally in North Idaho where it is so bright today that I am blinded! But I hate to close the draperies on such a beautiful day.




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Re: Snowbird blefros

Re : Re: Snowbird blefros --- Sally - in - Idaho
Posted by Lynn Yarbrough , Nov 08,2001,09:21 Top of Thread Archive
Actually, I'm somewhat relieved that they _aren't_ Blefros, because I was beginning to think that there was an epidemic in dystonias around here.

I don't see any benefit in giving them my 'phone, unless you need to get in touch through them somehow. On the other hand, no harm. Your call.

--- Lynn




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Re: help/lynn

Re : Re: help --- Lynn Yarbrough
Posted by kathy , Nov 05,2001,06:13 Top of Thread Archive
i just printed your reply because it is some of the clearest, most concise writing i have seen on such a loaded question. if i ever have to answer this i wil refer to this sheet. altho beb unfortunately primarily strikes womean. this coming from a man is really a firm expalnation of it, and with the right light touch !



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Re: help/Lynn

Re : Re: help --- Lynn Yarbrough
Posted by Joann Humphrey , Nov 05,2001,12:02 Top of Thread Archive
40 years you've had BEB!!! Have you had any surgery or just treat the problem with botox & medication?
Joann in AR, who may have surgery with Dr. A.



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Re: help/Lynn

Re : Re: help/Lynn --- Joann Humphrey
Posted by kathy , Nov 07,2001,06:03 Top of Thread Archive
yes lynn, and did you have any of the problems i mentioned before the advent of the new faster modems??



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Re: help/Lynn

Re : Re: help/Lynn --- kathy
Posted by Lynn Yarbrough , Nov 07,2001,09:48 Top of Thread Archive
Well, when I got started as a blephro, there WERE NO modems, no networks, no space program, just barely a few computers -- you would not believe the state of the computing biz when I got started in it (it was my career until I retired just after Y2K - remember when? Even commercial television was in the Milton Berle phase.

Finally, a correct diagnosis in 1990, after over 30 years of struggle. WOW! Does that injection feel good!

--- Lynn




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Re: help/Lynn

Re : Re: help/Lynn --- Lynn Yarbrough
Posted by kathy , Nov 15,2001,08:51 Top of Thread Archive
well that was certainly a sideways way of not answering my question! i take it that you didn't notice anything different with the speed of the screen painting the page or light sensitivity or amount of time spent on the computer?



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Re: help/Lynn

Re : Re: help/Lynn --- kathy
Posted by Lynn Yarbrough , Nov 15,2001,19:21 Top of Thread Archive
Kathy,

I'm sorry to be unresponsive, but screen repainting, glare, etc. have never been a part of my discomforts. I continue to use my computer several hours a day (I am ass't Sysop for the Math/Science forum) without any problems, and go outside in SoCal's BRIGHT sunlight without much of a problem. I do have wrap-around sunglasses and a cap that I wear when it's really bright, but I can take them off anytime and not suffer.

--- Lynn




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Re: help/Lynn

Re : Re: help/Lynn --- Lynn Yarbrough
Posted by kathy , Nov 16,2001,05:00 Top of Thread Archive
well that's wonderful! you must have a mild case of beb.



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Re: help/Lynn

Re : Re: help/Lynn --- kathy
Posted by Virginia , Nov 16,2001,09:10 Top of Thread Archive
Kathy, it is one of the strange aspects of this condition that things affect us all so differently. I can use the computer for hours without a problem (except slightly dry eyes), but flipping channels on the TV drives me nuts and sunlight bothers me a lot.

Virginia in AL




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Re: help/Lynn

Re : Re: help/Lynn --- Virginia
Posted by kathy , Nov 16,2001,15:18 Top of Thread Archive
virginia, i just must have had some prolonged side effects from my injections or something because they seem to be better now but could not tolerate afternoon light for about 4 straight days. and it's been 4 weeks since my last set.



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Re: help/Lynn

Re : Re: help/Lynn --- kathy
Posted by Lynn Yarbrough , Nov 16,2001,11:21 Top of Thread Archive
My symptoms are certainly different from yours and many others I've read, but mild? It doesn't feel that way. Incapacitation comes in lots of flavors.

--- Lynn




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Re: help/Lynn

Re : Re: help/Lynn --- Lynn Yarbrough
Posted by kathy , Nov 16,2001,15:19 Top of Thread Archive
yes they certainly must be different.



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