Discussions By Condition: Eye conditions

Intro -- Lynn Yarbrough

Posted In: Eye conditions 6 Replies
  • Posted By: Anonymous
  • March 26, 2006
  • 08:59 PM

I have had BEB since about 1960. It was misdiagnosed at least twice -- as I recall, once by my GP and once by an Opthalmologist -- as psychosomatic, and I spent several years with analysts, making no progress. Finally, in 1990 a new analyst had the wisdom to look for new developments in the literature and identified my condition as BEB. Under his direction, I tried all the then-known drug treatments, all of which were either hopeless or caused unacceptabe side-effects. We then agreed that Botox -- just approved by the FDA -- was my best hope. It worked! :)

I am a regular contributor to the BEBRF Bulletin Board, and represent the organization for Riverside County, CA. Over time I have received Botox injections from eight different doctors from the East and West coasts. A substantial part of my motivation is to forestall the kinds of misdiagnoses I had in the past.

--- Lynn

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6 Replies:

  • I was diagnosed officially in 1995 with BEB and Meige's Syndrome. The diagnosis had taken almost 2 years and 3 doctors and I then read about Dystonia in the Woman's Own magazine whilst vacationing in London, England. I visited the Dystonia clinic there and got some printed information and knew from the explanation that I had found out what I had! I came back to Toronto, Ontario, Canada and saw a movement-disorder specialist and was diagnosed. I receive 90 units of botox (it took about 2 years to perfect the treatment sites and units) and it lasts me usually 4-6 months. I haven't been able to read a book in all these years though and regret that and do have a lot of dry eyes and light sensitivity. I am on the board of directors of our BEBRCF (Canadian) support group Foundation and try to help out as much as possible. A group has just formed in British Columbia and we are hoping to expand even further across the country if there is a need, although its a slow business when none of us can see properly! I visit the U.S. BEBRF bulletin board everyday and try to help newly-diagnosed patients as much as possible. Looking forward to hearing from others.
    Anonymous 42,789 Replies Flag this Response
  • Hello. Saw your posting regarding BEB. My husband has had blepharospasm since 1995 and was mis-diagnosed by three different doctors until he found one at the Shiley Eye Clinic at UCSD in La Jolla, CA. He has had a myectomy in both eyes and STILL receives Botox every 3 months. We live in Riverside County and would love to find a specialist in Riverside County. A doctor has to really know how to give these shots. Do you know of a specialist in Riverside County. Can really relate to your having BEB it is truly a horrible disorder and people just do not understand what people go through. Unfortunately, my husband still had to have the Botox even after that surgery. The Dr. said he had one of the worse cases he has ever seen.Hope to hear back from you. New to this site so not sure if I am posting this correctly. Good Luck to you. Thanks Bonnie and Mike in Murrieta, California
    Anonymous 42,789 Replies Flag this Response
  • Yes, I am familiar with two excellent doctors for this condition who work in Riverside County. The trouble is, they are both part-time -- only here for one day a month. If you will send me mail at LYarbrough@dc.rr.com I will be happy to reply with their contact information. BTW, both are professors at So. Cal. Universities.--- Lynn
    Anonymous 42,789 Replies Flag this Response
  • HELP!!!I think i may be getting - or have this thing. For the last couple of months my eyes have been/felt weird. I wear contacts and told my eye dr in March that my eyes "blink alot" - much much more than normal - for me. she said my eyes were just dry... ok...Lately my eyes feel tired - really tired. and feel heavy.it most bothers me when i am driving or watching a TV... i am very very aware of all the blinking.. very excessive blinking. And it makes me very anxious on top of all this. I used to be able to have staring contests with my husband for fun... now i feel i can't stare ... i start to.... and i feel my eyes blink..i also have a rule/out condition for glaucoma.. i don't know if i am just feeling eye pressure?? Or sometimes my sinus' bother me.If i press on my eyebrow - my eyes relax somewhat - IS this BEB??? Can you give me any information/ direction?? Thanks
    Anonymous 42,789 Replies
    • August 28, 2006
    • 01:43 PM
    • 0
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  • (1) Ask your spouse to help: when you blink, is it just the eyelid muscles that flap, or do the muscles surrounding the eye (above the brow, or in the cheek) get involved? If the peripheral muscles are involved it's probably BEB.(2) If you find your lids sometimes won't open -- they spasm -- it's almost surely BEB.(3) Find an opthalmologist or neurologist, preferably a movement disorder specialist, to give you a GOOD diagnosis.(4) Check out the BEBRF web site, which has a ton of information that will be helpful, plus a lot of patients in the same boat with you.Good luck!--- Lynn
    Anonymous 42,789 Replies
    • August 31, 2006
    • 11:40 PM
    • 0
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  • thanks for the info Lynn- My husband actually thinks it is more from sinus pain - infection...It only seems to happen occasionally and i am noticing that it seems to coincide with pain over/in my eyebrow area or while i am having a sinus headache with pain on my temple.. but i also get pain sometimes in my cheek area as well... my lids as of yet do not spasm -nor do they stay closed.... it is more that i am very consicous of blinking excessively - ALOT.. and it is annoying. My eyes also sometimes feel heavy/tired and seem to want to close. When i read the symptoms - i got concerned and a little anxious. My husband suggested taking more sinus meds to rule out the sinus problems first and to try to not be consious of it - but keep track as well. Sometimes i feel like i have to open the eye wide.. or stretch it.i am also having some of my nerves in my arms acting up as well... i don't know if this is all part of menopause - or my body is indeed falling apart??????hjm
    Anonymous 42,789 Replies
    • September 7, 2006
    • 02:08 PM
    • 0
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