new member, need help!!


Posted by Margo Heller-Levy , Mar 23,2002,11:38   Archive
Hi! I was recently diagnosed with BEB/Meige. I am 49. First noticed in Sept 2001, not diagnosed until Feb 2002 after going to 5 doctors, including a top neuro ophthalmologist. He told me I had dry eye syndrome. I kept on and was finally diagnosed by an ophthalmologist who treated one side of my face (right) with Botox (I think 25 units but not sure) Then the symptoms were more evident on the left and he treated the left side a week later. I noticed about a 50% improvement two days later. Still not great but better. Worse as the day wore on. Now 2 1/2 weeks later, I am experiencing returning symptoms on the right. Is this because he didn't give me enough, injected the incorrect sites or it just isn't working for me? Has anyone else out there experienced this the first time around? I am in need of some answers. Also, what meds have worked for you? I tried Kilonipin for about a month with only slight improvenment. Any feedback would be appreciated. I was depressed in the beginning before the diagnosis but now am just frustrated and hoping that Botox is the answer for me. Please feel free to give me your thoughts! Thanks, Margo from Needham, MA :)

--modified by Margo Heller-Levy at Sat, Mar 23, 2002, 11:40:39




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Re: new member, Welcome!

Re : new member, need help!! --- Margo Heller-Levy
Posted by Delaine Inman , Mar 23,2002,12:20 Top of Thread Archive
Margo so sorry you have this disorder. Your story sounds familar to me and many others. The questions you ask are not easily answered. Wish they were. This is a frustrating disorder to treat and have. It does take some time to find the sites and dose that is going to be best for you. Botox didn't work well the first year and I had surgery and it helped some and then Klonopin at 1/2 tablet 4 or 5 times a day was added last year. I get 32 units of Botox by someone who really looks at my spasms and feels my face as it spasms. Sometimes the site is more important than increasing the amount of Botox. I had 50 units the first year, then 65, then 70, then 100 and it didn't help just made my eyes so dry and many side effects. I was 48 and a half when this hit me about 3 years ago. I changed doctors many times to find the one that worked well for me. Don't give up. You are not alone. You'll get many different ideas to try. What works for one doesn't always work for everybody, but we share what does and doesn't work so you can try different things. Hang in there.



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Re: new member, need help!!

Re : new member, need help!! --- Margo Heller-Levy
Posted by June in Toronto (June Floyd,June in Toronto), Mar 23,2002,12:50 Top of Thread Archive
Hi Margo, welcome to the beb bb. Sorry to hear you have this disease but I hope that you will find some answers from the people that post back to you.
I was one of the lucky ones in that botox (60 units) worked for me right away, about 7 years ago. I had gone through the diagnosis of dry eye that you went through, various doctors and a couple of years before it was finally diagnosed. After the 3rd set of injections I had to go back for a booster and a slight change in injection sites. I did this a couple more time and am now levelled off at 90 units every 4 months or so. I hope you are using preservative-free drops during the day (everyday of the year) and a night-time lubricant and eyeblinds. This will help prevent further eye problems. An eye wash each morning will remove the night cream (baby shampoo is good). There's much to learn (and more as we go along), Margo, and it all takes time. I trust you will find something from somebody to help you cope. Keep posting.

June in Toronto (beb/meige)




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Re: new member, need help!!

Re : new member, need help!! --- Margo Heller-Levy
Posted by Lynn Yarbrough , Mar 23,2002,14:08 Top of Thread Archive
Hi, Margo,

Sorry to hear about your BEB. It's not going to be easy for you for a while. I was first diagnosed at Mass Eye & Ear in 1990, so I am familiar with some of what you are used to. My wife and I lived in Lexington for 25 years, raised all our kids there.

Be patient. It's going to take a while to find the right combination of treatments that will work for you. I had BEB for 30 years before I got a correct diagnosis, much less a good treatment. After starting Botox it took a couple of years to find the right dosage, but I have been functioning more or less normally since then. So it is possible to live a normal life with BEB.

I always advise new patients that stress is really bad for BEB, and that getting rid of it is a BIG help.

You have come to the right place. We all understand the myriad frustrations that you have gone through and will go through.

--- Lynn




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Re: new member, need help!!

Re : new member, need help!! --- Margo Heller-Levy
Posted by Sally - in - Idaho , Mar 23,2002,15:30 Top of Thread Archive
Hi Marge ...

Welcome to the BB and thanks for joining us and sharing your story. I have been getting BOTOX injections now for about 2 1/2 years, every two months. Most doctors start with a low dosage and see how you react to that, then gradually increase as needed. Perhaps that will be the way your doctor chooses. I have been right at 100 units for quite some time now and it works fairly well ... at least well enough to be worth continuing. Keep track of the stages your eyes go through in between sessions and let your doctor know about what goes on. That is his/her best way to understand the effect BOTOX is having on you.

Please come often. Share your frustrations, successes and quesitons. There is always someone around to listen and respond.

Sally in North Idaho who is sleepy with a sinus infection.

--modified by Sally - in - Idaho at Sat, Mar 23, 2002, 23:26:30




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Re: new member, need help!!

Re : new member, need help!! --- Margo Heller-Levy
Posted by Shirley-Arkansas-USA , Mar 23,2002,19:10 Top of Thread Archive
Hi Margo and welcome to the bulletin board group. Others have already given you some pointers and helpful advice.
I'm 50 and developed BEB when I was 47. It's not fun, that's for sure. Most people do have or start out with dry eye problems. Frequently even if a doctor suspects that you have BEB, he is going to treat your dry eye symptoms first and see if you improve. BEB symptoms typically don't go away when the dry eye condition is treated. You may get a little better but you will still have the squeezing and eye closure. The people with just dry eyes will get better and their reflex blepharospasm will go away.

BOTOX takes anywhere from a few days to typically 2 weeks to reach maximum benefits. I see continuing improvement for up to 3 weeks before things kind of level off. In the midst of this, you may be having mild symptoms one day and severe symptoms on another (having nothing to do with the BOTOX) making it difficult to figure out how much or if the BOTOX is helping.

Like others have said, it does take time to get dosage and sites right for each individual. This is where a really good doctor is a must as you will need to be able to communicate how well things are working or not working. It is a very slow, tedious process and can be extremely frustrating. Talk to us often and it will help. We do understand what you are going through as we have been where you are now.

I've tried many different meds but right now I am on Klonopin .25mg twice a day and Benadryl 50mg, three times a day along with BOTOX about every 8 to 10 weeks. Be sure that you are using preservative-free eye drops during the day and an eye ointment at night especially affer BOTOX as your eyes will not be blinking as well and may not completely close at night. Sleep masks are helpful, too.

BOTOX works very well for some and not at all for others and helps to varying degrees in many others.
Do contact the BEBRF for information if you have not already done so. Look for a support group in your area.

Don't be alone with this. Someone is always here.

Shirley in Arkansas

http://www.blepharospasm.org/01daroff.html Site for medications for BEB Found in BEBRF Main Page at top of this bb page under scientific abstracts.

--modified by Shirley-Arkansas-USA at Sat, Mar 23, 2002, 19:14:23




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Re: new member, need help!!

Re : new member, need help!! --- Margo Heller-Levy
Posted by Alan Phair , Mar 23,2002,21:16 Top of Thread Archive
Margo, sorry to hear you hae this disorder but hope that you will get relief from the Botox. I live not far from you (just over the border in Salem NH) adn have a pretty broad area of experience with BEB/Meige having gone through several Myectomies and being a Botox failure patient for several years. Who is your doctor. I go to Dr. Borodic in Boston now but used to go to Dr. Tom Hedges who was great also. If you want to talk, let me know and I can EMail you my phone number or I can call you. My EMail is APhair@aol.com Good Luck...Alan



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