Posted by: Sally - in - Idaho ®
01/14/2003, 20:20:50
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Hi Carrie,Welcome to the BB. I'm sorry you need us, but glad you found us! Your symptoms sound like what most of us have gone through in the early stages. Singing, making noises and other gimmicks will help for awhile, but soon they lose their effectiveness. Botox might be of great help to you, but it's certainly no cure. I have injections every two months and they make it so I can drive on a very limited basis (but it makes me extremely tired), and I can read, although much more slowly than before and it, too, makes me tired. I cannot watch movies and television is not worth the discomfort. Please tell us more about yourself as you feel comfortable doing. Ask anything you want and someone will try to respond. This is a good place for support as well as a few laughs. Good luck in working out the best treatment for YOU. Sally in North Idaho
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Posted by: irene sieger ®
01/19/2003, 17:53:14
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Sally
Hi I'm Irene and I'm also new found the support group about a year ago.
And the support group are angels they know alot about BEB and any questions that you might have. There are great group of person and I' glad I found them . They know more than you think. I wish you the best but you need to find a good doctor to take care you . Take care
Irene
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Posted by: Corrie Thomann ®
01/14/2003, 21:03:50
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Hi Carrie,
Welcome to the BB. Your expierence sounds so much like mine. I have had blepharospasm for nearly 8 years, and have tried all those sensory tricks to keep eyes open. They only work for a while.The Botox does help some people, it is not a cure, but is worth a try.You have found a place where you can get a wealth of information, support and friends that understand.
I wish you well in finding a treatment.Corrie in SC
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Posted by: Kathy in Oregon ®
01/14/2003, 21:13:06
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Welcome, Carrie. It would be interesting to see what those "spots" are . Perhaps 'floaters' , some opthalmological term i have heard in others describing the same thing. I find very often that talking keeps my eyes open( some correlation between mouth and eyes) and i used to sing at the top of my lungs in a car to all my favorite music. The only thing that did is vastly improved my voice range.
Also the one eye closing by itself is something to think about.
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Posted by: Jackie Dewey ®
01/14/2003, 23:23:15
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Carrie, Welcome. Your experience sounds similiar. I remember telling myself to calm down and just hold my eyes open before being diagnosed. I thought I could just make them stay open until I stopped and realized it just isn't natural to have to make my eyes open. Anyway it was a relief to receive the diagnosis and not think it was all in my head. I am one person that botox helps but know that it doesn't work the same for all. This is a great place for support and information.
Jackie from dry Colorado
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Posted by: ClaireW ®
01/15/2003, 03:31:24
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Welcome Carrie,
I too am fairly newly diagnosed..May 2002. My experience was similar to yours with my eyes...meetings were the pits...my eyes would just close and I'm sure people thought i was falling asleep or ignoring them!
I had my first Botox last October. At first I had some horrible side effects,they lasted 6 weeks or so, but as they wore off it has certainly helped a lot to keep my eyes open. I must admit my first reaction was NEVER AGAIN...however, as I am now feeling the benefit and it is just starting to wear off I am now looking forward to getting my next lot. I think that it can take a few goes to get the dose and sites right for each individual person.
You will certainly find lots of encouragement and support on this baord.
Greetings from the UK
Claire
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Posted by: pippa from scotland ®
01/15/2003, 04:50:51
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Hi Carrie!
I am glad that you found us as I know how much of a lifeline this group can be. I too felt that it was pyschological at first as the symptoms seemed so weird and I had never heard of anyone having anything remotely similar.
As for advice...well, eye ointments and gels without preservatives help keep the eyes from getting dry as this makes the blinking worse. Also when getting the Botox I was well advised by this group to keep a record of what units were given each time, and where they were given. Take charge of your life in this respect as you will be the best person after a little experience to know what works best for you, and you will need to be able to communicate this to your doctor. This has been very useful advice for me. Also I was given the advice about asking the doctor to use a very fine needle, a size 32 if possible. I can only get a 28 here in my hospital, and I asked for it today when I got my Botox. The last time I don't know what the doctor used but it seemed so blunt and thick! And I have scars from it. So I plucked up the courage to ask him to use the size 28, which he did...and what a difference! I hardly felt it at all.
I was told that Emla cream would make no difference but that I could take a paracetamol tablet before coming, but not aspirin as it thins the blood and disperses the Botox too much. I know others on the board swear by Emla cream but I haven't been given that option.
Hope this gives you some help Carrie. Keep in touch with us and let us know how you get on.
Pippa from Scotland where we are having a storm today and my patio containers are blowing over and the trees are bent double!
Anyway, keep
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Posted by: Ann Doyle ®
01/15/2003, 08:41:02
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My eyes started just like yours. One side is much worse than the other. A woman in my town has been taking Botox every 3 months for 11 years . It wears off the last week. She's really blessed.
I get Botox every 10 weeks . I would like them every 8 weeks, but my Doctor doesn't believe in it. I do. I stay with him because he is really good. We work together on what works and what doesn't. Things keep changing so pay attention to where you are getting the shots and what the effect is. I also developed Meige syndrome which means it is down around my mouth and now my throat and jaw.
Important things are a good DR., fine needle 30-32, work with him. A lot of us go to a Movement Disorder Clinic. It's an all day trip for us but worth it. Also Botox can take up to 3 weeks to take efect. Usually it is a lot sooner. Ann Doyle--modified by Ann Doyle at Wed, Jan 15, 2003, 08:43:13
Modified by at Wed, Jan 15, 2003, 08:43:13
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Posted by: debbie campbell ®
01/17/2003, 22:35:24
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Hi Carrie,
Welcome to the BB. I was recently diagnosed in Jan 02 with BEB. Fortunately botox works quite well for me. I receive 12 injections every 3 months. My left eye seems to want to close all time, even with the botox. My right eye is very responsive! I am able to pretty much function as I did before BEB with very few limitations. I do however continue to have really good days and very bad days but for the most part, manageable. I hope all goes well for you.
Debbie from Canada,
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Posted by: Lyn Patterson ®
01/15/2003, 18:18:02
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Hi CarrieGreetings from Western Australia. I had 'spots' once - this was about 10 years ago when I had iritis. I already had BEB at the time. I was in hospital for 2 weeks seeing the ophthalmologist every day and when the spots developed I was sent to another hospital for special tests. They never did find out the cause, they went away quickly and I have never had them since. I have Botox every 8-10 weeks and find it wonderful. It really works for me. Lyn
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Posted by: Barbara Molnar ®
01/16/2003, 14:15:23
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I have had BEB since July of 1999 and have all the same symptoms you have except that my left eye just goes in sympathy with the right otherwise it's ok most of the time. I cannot read, go to the movies or watch tv without blinking and closing my eyes to the point that they hurt. I find when I'm not under stress though that they are better. I take Zoloft for depression because I do get so depressed with this and I take Ativan for the anxiety this causes. They help somewhat but I keep hoping for something other than Botox shots which hurt and I'm terrified of needles. So far, I've been having a pretty good week and this is after 4 years. I took early retirement and that has helped enormously because I don't have the stress of always "being ON" so to speak. I have a great support group of friends who watch out for me and without them I don't know what I would do. Also my husband is very supportive especially when I walk into doorways, walls and shopping baskets of other people. So march on soldier, hopefully this too shall pass as my therapist says.Barbara
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Posted by: irene sieger ®
01/19/2003, 18:17:00
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Hi Carrie
This is Irene I also started with a twitch on one eye and than on the other and there were times I felt my eyes very heavy. I'm very sensitive to the bright lights and I wear my darkest eyeglasses.
But not only when there is sun but on cloudy days the same. I saw two eye doctors before I saw a neuroligist and the other two doctors all they found was alot of dryness to my eyes I use the creams and eye drops and even a eyemask when I go to sleep. I'm on the Botox injections but there times where there was really no change even with the botox shots. So I know where you are coming from. Stay with this group you will learn alot from others who have had this for years.Take Care
Irene from Texas
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Posted by: Lynn Yarbrough ®
01/19/2003, 19:52:33
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Hi. I'm Lynn Yarbrough (that's a guy name) and I've had BEB since 1960. I get Botox shots every 6 months (I'm a slow healer) and they work marvellously for me. However, that's not why I am writing. A few earlier replies have mentioned stress. I want to emphasize STRESS, as it is your worst enemy. Stress does not cause BEB, but it agravates BEB terribly. Learn to control and diminish it as much as you can, as reducing stress will add to the effectiveness of whatever medication you use. Believe me on this -- it has been a lifesaver to me.Also -- since you speak of one eye being considerably worse than the other, another thing you should pursue with your Doctor(s) is Hemifacial Spasms (HFS) which behaves much like BEB but only affects one side of the face and has a different cause (a compressed nerve near your brain) and a surgical treatment that is not effective for BEB.) Good luck, --- Lynn
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Posted by: Jackie Dewey ®
01/19/2003, 23:46:46
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Wow! BEB since 1960! I just read your response. It sparks a lot of questions about your history. I'm sure you've probably already shared that info but since I am new to the BB I'm just curious. What type of treatment did you receive in the beginning? Did you ever have to have Botox more frequently?The more I log onto this site the more I am amazed at the types of experiences that are shared. Jackie from dry Northeastern Colorado
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Posted by: Lynn Yarbrough ®
01/20/2003, 13:05:35
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Hi, Jackie, Ask away -- if my answers can help someone deal with BEB better, it's always worth my time. My condition was misdiagnosed twice by different doctors. For the first 30 years it was treated as psychosomatic, and the tools we used were psycho-therapy and tranquilizers. The psych sessions were helpful but not for the BEB! I was becoming addicted to tranqs and had to stop them. By the 80's I had to stop driving and was riding with co-workers and any other way I could find to keep working. What I learned during that period was the importance of stress management. Finally my 3rd psych'ist gave me a good diagnosis, verified by neuro-opth's, in 1990. I tried every drug treatment known to help at that time, without success. Finally in late '90 Botox -- it worked! I started with nine 5-MU shots around each eye, now down to 5 sites each eye and 20 MU per eye. Initial frequency 3 months, now down to 6-7 months between treatments. So now I have normal eye behavior about 11 months out of the year and no side effects or serious limitations. Over the 12-year period I have had 7 expert doctors whose names I am delighted to share with anyone, 4 east coast, 3 west coast. My hope for you is that you have such success. Short of complete remission, it doesn't get much better. Now I am the regional BEBRF rep for Riverside Co., CA and on the lookout for new BEB/Meige/HFS victims, and it's surprising how many I am finding -- about 6 since settling in my home 4 years ago. Be well, --- Lynn
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