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Posted by: Barbara Molnar ® 12/29/2002, 15:58:32 Author Profile Mail author |
I've had this problem with my eyes twitching for the past 4 years. At first I thought it was a nervous condition then a friend showed me an article about this problem. I was just twitching at the beginning but now especially when I'm under stress my eyes close for minutes at a time. I still drive but at times it becomes very difficult and I do not go far. Does anyone have any ideast for me? Thanks you, Barbara
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Re: Blepharospasm Re: Blepharospasm -- Barbara Molnar Top of Thread Archive
Posted by: Patti Miller ®
12/29/2002, 16:19:40
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--modified by Patti Miller at Sun, Dec 29, 2002, 16:20:33
Modified by at Sun, Dec 29, 2002, 16:20:34
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Re: Blepharospasm Re: Re: Blepharospasm -- Patti Miller Top of Thread Archive
Posted by: Barbara Molnar ®
01/03/2003, 16:37:55
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Thanks so much for your help. It is deeply appreciated.Barbara
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Re: Blepharospasm Re: Blepharospasm -- Barbara Molnar Top of Thread Archive
Posted by: June in Toronto ®
12/29/2002, 16:35:22
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A lot of us beb'ers started off with twitching eyes, sensitivity to light and a lot of us don't drive because our eyes close (this also happens more with stress). We can give you helpful hints about eye lubricants wrap-around sun glasses and more, but first you need to read up on the disease and get it checked out by a good doctor who understands beb. Good luck and come back again and let us know how you are doing.
June in Toronto (beb/meige 8 years)
Related link: http://www.blepharospasm.org
--modified by June in Toronto at Sun, Dec 29, 2002, 16:38:08
Related link: http://www.dystonia-support.org
Modified by at Sun, Dec 29, 2002, 16:38:08
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Re: Blepharospasm Re: Blepharospasm -- Barbara Molnar Top of Thread Archive
Posted by: Rita Molnar ®
12/30/2002, 18:17:23
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Hi Barbara...We do share the same last name and the same Home State, and if we share the same former place of employment, I think we might know each other (???)....am I right?
Your words sounded very familiar to me...I recall asking the same question several years ago, before finally being diagnosed with Blepharospasm and Meige.
You came to the right place looking for information. I'm a regular visitor here (sometimes I even pop in to ask a question or offer a comment)...I've learned a great deal. The people who respond are folks who can relate to your problem, and they are very knowledgeable and helpful. Keep coming back, and also look through the archives for past "conversations" which might be helpful.
I believe your first step would be to get a proper diagnosis. After trying so many different types of doctors (psychiatrists included), I found a neuro-opthalmologist (Dr. Lepore) at Robert Wood Johnson who was very familiar with Blepharospasm, and recognized it in me during my very first visit. Although what you describe sounds a lot like my own problem, it is possible that you don't have blepharospasm...but you need to find out. I hope you don't have it, but if you do, there are things that can help.
If you are diagnosed with Blepharospasm, please know that it's not the end of the world for you, even though there is no known cure at this time. There is (thankfully) a treatment, in the form of Botox injections, which can offer some relief, and, depending upon your particular circumstances, there might be other things that can help.
My symptoms started mildly while I was still at work, and were a total mystery to me. They consisted of squinting, and a lot of feelings of "pressure" in the muscles in my face. I became very sensitive to light, and to movement. I found that my eyes were shutting, involuntarily, for several seconds at a time (very dangerous while you're driving)...that my eyes were closing when I was walking, and I began bumping into walls. The problem finally became so intense that it absorbed all of my energy. Aside from it taking over most of my thoughts, it was also exhausting, and I was tired at the end of each day from trying to control or fight these movements, or pressures, or what-the-h-- they were. Because no one could understand what I was describing, and because I was "bounced" to so many different types of doctors, I thought it was my imagination, or maybe it was that I was going insane. Once I was diagnosed, and began treatment for relief, things have become a lot better for me. There has been some progression of the disease, but very slowly. I've learned how to maintain a reasonably good lifestyle, despite the usual frustrations something like this brings on, and I hold onto hope that one day someone will find a solution--a permanent cure for this thing.
In the meantime, I've been receiving Botox injections every 3 months for the past several years (rather painless for me). The injections help me, somewhat, for about 2-1/2 months out of the 3, and I've been able to function reasonably well as a result, although I've never really been 100% symptom-free. I've opted for, and am scheduled on the 13th of next month for Blepharoplasty. Even though the consensus is that this procedure might NOT be of much help, I'm hoping that it can relieve the pressure on my eyelids, which seems to "trigger" my spasms (blinking and eye-shutting). Following my surgery, I'll be sharing the outcome with this BB--might be helpful to others who might be considering the same thing.
Anyway....if you are THE "Barbara" I know (but even if you're not), please e-mail me if you'd like to, and I'd be happy to share informaton on any of my experiences with you.....
Best wishes !!!
Rita in New Jersey
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Re: Blepharospasm Re: Re: Blepharospasm -- Rita Molnar Top of Thread Archive
Posted by: Ann Doyle ®
12/31/2002, 12:50:01
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Barbara, your story is just like my story , except mine keeps getting worse. Most don't. I would got to a Movement Disorder Clinic. Then you know they are trained to find out what is wrong with you. They are Doctors Plus. I thought they weren't as good as DRS. I was misdiagnosed by a Neurologist and an Opthamologist. Those are the 2 professions that usually have heard about it. But I would recommend the Movement Disorder Clinic or DR. That's their business. Good luck. Ann Doyle
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Re: Blepharospasm Re: Blepharospasm -- Barbara Molnar Top of Thread Archive
Posted by: gayle register ®
12/31/2002, 15:14:40
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Rita, what is Blepharoplasty?
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Re: Blepharospasm Re: Re: Blepharospasm -- gayle register Top of Thread Archive
Posted by: Rita Molnar ®
01/01/2003, 18:36:55
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Hi Gayle....
Bleparoplasty is a cosmetic procedure. Essentially, it removes extra skin and tissue from above and below the eyelids. Don't confuse it with a Myectomy, which, I understand, is a recommended procedure to many BEB patients who are not helped by Botox injections.While doctors (mine included) will tell you that Blepharoplasty should not be expected to relieve Blephrospasm symptoms, I've decided to go ahead and have it done, anyway. I really feel it might relieve some of the pressure around my eyes which seems to trigger my Blepharospasm. And, even if it doesn't work, it might help to take a few years off this tired, old face, and that would be ok.
I considered a Myectomy for myself, but I'm not sure I'm a good candidate for it since I do not have Apraxia to a large degree, and since the Botox injections I've been getting for the past 2-3 years do give me some relief, at least for 2-1/2 months out of every 3. From reading the BB, I would guess I am one of the more fortunate ones with BEB and Meige, in that Botox has been somewhat helpful for me, and in that I can function reasonably well, most of the time (despite this constant, horrible squeezing thing that wants to take over my face).
Anyway, following a previous attempt this last September, when my surgery had to be aborted because of a blood pressure spike, I'm back at it again, and this time the surgery is scheduled for January 13th. With the help of a prescribed beta-blocker, I should be just fine.
Happy New Year!!!
Rita in New Jersey
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Re: Blepharospasm Re: Blepharospasm -- Barbara Molnar Top of Thread Archive
Posted by: Barbara Molnar ®
01/03/2003, 16:48:25
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Hi Rita,Yes we did work in the same place and it's so good to hear from you. This thing drives me crazy at times although I have to admit that this past week has been pretty good. It's the driving and the walking that scare me into making it worse at those times. I also walk into wall (got a lot of lumps on my head). I also fell twice while walking and I love to walk. I may just contact your Dr. Lepore and see what he says.
Thanks so much for getting to me. Hope retirement is going well, I also just took the early retirement package. I couldn't go into work anymore.
Hope all goes well for you with your next endeavor and that you get relief.
Happy New Year - hopefully 2003 will be better than 2002
Barbara
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