just diagnosed
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Posted by: carolj ® 10/27/2003, 19:25:48 Author Profile Mail author

Hi all, I was just recently diagnosed with this eyed disorder and looking for more information because its all new to me.My symptoms consist of random eye quivers to heavy eye lids and especially sensitive to sun when driving and constant fatigue.I`m now taking random medications and going to a neurologist to try and get help.Any information offered here would be greatly appreciated and may God bless us all.

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Re: just diagnosed
Re: just diagnosed -- carolj		Top of Thread	Archive

Posted by: Delaine Inman in TN ® 10/27/2003, 21:24:24 Author Profile Mail author

Carol so sorry you are one of us, but we're glad you found us and welcome to a place where someone is always home and ready to listen and answer questions the best we know how. Tell us more about your self. I am 53 year old female diagnosed in 1999. It was quite a shock and cost me my nursing career as I knew it. After a few years I've learned to cope and get on with life, but it was very hard going from someone with almost 30 year career and independent to not being able to work, drive, watch TV, movies, walk, sit at computer. With time, surgery, Botox, Klonopin and Piracetam I am so much better. I focus on health and go with the flow. Some days are better than others and I take full advantage. I'm the state coordinator in TN and Middle TN area rep that does a support group in Nashville every 3 months. I have met some wonderful people on the BB, at conference, meetings, phone, email and feel my career goes on in a different way. I never give up hope and try to stay positive with a little help of my friends from BB and others who support me. My family has been great. Hope you have a good support system. Go to BEBRF site and get info, order packet, find a good doctor who is an expert doc and listener. Know that it hasn't progressed in my case...it is better than it was in 1999. Everyone is different and everyone responds to different treatments and meds.

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Re: just diagnosed
Re: just diagnosed -- carolj		Top of Thread	Archive

Posted by: Lynn Yarbrough ® 10/28/2003, 13:09:21 Author Profile Mail author

Hi. I'm Lynn, a 73 year old man who has had BEB for 40+ years. Some points to ponder: 1) Although stress is not a cause of BEB, it certainly makes the spasms worse. Try to get control of your stress level. 2) You can't see yourself blink, so you won't even know what all of your symptoms are until you borrow a Video camera and get some tape of yourself in full spasm. Do this first for your own benefit but also for your doctor: for some reason the spasms may diminish simply because you go to the doctor, so the dr. may not know the full extent of your condition. 3) The spastic blinking causes your iris -- the 'shutter' in your eye's 'camera' -- to open, which exposes your retina to unusually high brightness, which is painful and tiresome. Wraparound sunglasses may become a necessity. 4) There are several modes of treatment which work or fail to work according to your physical makeup. Trial and error is required to find what works for you. Drugs, Botox and other injections, surgery all may have their place. It may take two or three years to find the right one, so learn to be patient with yourself and your doctor. Botox, the treatment of choice for most of us, simply doesn't work for some. Drugs did nothing for me. Surgery is expensive and irreversible, and is the last resort. 5) When spasming, driving in particular requires a major readjustment of your lifestyle -- you may become dependent on others for transportation. Learn to live with it. Stick around here. The process will be a pain for a while, but we have all been through trouble here and may be able to help yuo through yours. Above all, keep a sense of humor about it! --- Lynn Modified by Lynn Yarbrough at Tue, Oct 28, 2003, 13:13:35

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Re: just diagnosed
Re: just diagnosed -- carolj		Top of Thread	Archive

Posted by: June in Toronto ® 10/28/2003, 16:32:30 Author Profile Mail author

Hi Carol and welcome to the beb bb - but sorry to know you have this disease/disorder. You've come to the right place for some tlc and hints though - so ask away. The neuro may suggest a treament of botox for you and most probably will start with a low unit dosage which can be increased with each treatment until you get the most out of it. You could combine the botox with medication. I've had beb/meige for over 8 years now (I was 55 at the time) - gave up my career with the university because of it as couldn't drive, read and I, too, am light sensitive. Not having to work lessens the bad stress which, in turn, helps the beb. Tell us more about yourself if you feel comfortable doing so. Best wishes. June in Toronto

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