Re: BEB and Artane vs. Botox
Hi Carol and welcome to the bulletin board (bb). BEB stands for Benign Essential Blepharospasm. Benign means "not fatal". The "essential" means that it is of unknown cause and Blepharospasm is of course, involuntary, forcible closure of the eyelids.
Many of us have tried Artane. It works for some and not others. I tried it and couldn't stand the short term memory loss problems that I had with it. Others get good results with it as well as other drugs.
I'm 49 and was diagnosed approximately 2 years ago and do take Botox injections as well as Benadryl, Klonopin and Adderall.
Start asking away and tell us a little about yourself if you would like.Shirley in AR.
Re: BEB and Artane vs. Botox
Have you contacted the BEBRF or gone to their Website? When I was first given a brochure about BEB that is put out by the foundation I knew I had BEB. It was like reading about myself. I am 50 and have had this for 2 years. The light sensitivity, blinking that progressed to closing of the eyes, then to forceful spasms of the eyes. This was all worse when I tried to drive, ride, watch TV or any kind of screen. Botox every 3 months for a year and a long list of medications did not help. I had a partial myectomy, take some vitamin supplements, get Botox, and take Klonopin and I am doing better than I was. I also think I am getting better at just living with it and taking a day at a time. I still try everything I hear about and haven't given up hope. Stress really aggravates mine as well as most everyone. Like Shirley said ask away. Delaine from Tennessee
Re: BEB and Artane vs. Botox
Hi Carol ... and welcome to this site. You will find, if you hang out with us long enough, that we all come up with vaious tricks such as singing or talking to ourselves or even yelling to keep our eyes open when it is essential to do so. Are you still able to drive? Work? Read? I have been diagnosed with BEB (which Shirley explained to you) for a couple of years, after MUCH seeking and questioning doctors and being told, when I suggested the possibility of BEB because my mother had it, that it was so rare that it would be impossible for me to have! I had my first Botox injections in October 1999, after first trying Neurontin (which totally zonked me out). The Botox is scheduled regularly for every two months and I am doing fairly well on a dosage of 100 units, six injections around each eye. Not cured, by any means, but I can function as long as I stay rested and stress-free (is there such a state of life??). Please tell us more aobut yourself and ask any ?? that you have. Someone will try to answer. Sometimes you might think we are a bunch of cracked pots, because we tend to go off on silly wanderings now and then, but humor plays a big part in keeping us sane and healthy. We can get serious in a hurry when need be. Sally in North Idaho
Re: BEB and Artane vs. Botox
Hi Carol
Welcome to this site. I was diagnosed in March of 2000.
But I had symptoms since Sept of 1999 maybe a little earlier but
I remember very well in Sept going to my family doctor for excessive blinking.
I have never tried artane because of side effects I have heard on this site. I still get botox although I missed my last injections because my insurance changed and I need to get a new referral and get
recertified for the injections.
I have been doing much better since I started taking vitamins.
I take about .5mg of Klonopin but sometimes I forget that.
Ask all kinds of questions. everyone on this site has "been there,done that".
Priscilla
Re: Welcome Carol
Hi Carol, welcome to the bb - sorry you have beb but this is a good place to get feed back on the subject. I had childhood symptoms of beb but it did not get excessive until about 6 years ago - it took the usual many doctors and long time before it was diagnosed (by myself from reading a woman's magazine). I was put on a number of medications, but none worked - botox does and I get it approx. every 4-6 months - my next set is scheduled for March 7th and I can't wait as my eyes are very bad right now. Again, welcome and keep `talking'.
June in Toronto
My story
Thanks to all of you for welcoming me. To answer some of your questions about me, I'm 51 and have had BEB (easier to spell than blepharospasm!) and torticollis (ST) for ten years. I have a Ph.D. in English and used to teach at a university, but now I'm an assistant editor. (I don't have to face a classroom full of angry students who think I'm angry or some sort of freak.) I can't remember which came first, the stiff neck or the red eyes and extreme light sensitivity which were the first signs of my two dystonias. At first I was told that I just needed bifocals ("Far-sighted plus forty equals bifocals"!) and later, by a different opthamologist, that I had dry eyes (which I undoubtedly do), so I was using really thick, gloopy eyedrops whose name I can't remember. Then the torticollis started acting up and my head was turning to the right, sometimes at the same time that my eyes were closing. If I touched my cheek, the head turning would stop, but it's hard to drive or grade papers that way, or even to unlock a door, especially if your eyes are also closing! I told my sister about it over the phone. She didn't have any suggestions regarding the eyes, but she thought that the head turning might be neurological. (She's a lawyer who sees a lot of people who develop neurological disorders after being in accidents.) I thought what the heck--no one else is helping me and the doctors don't have a clue. So I made an appointment with a neurologist specializing in diagnosis rather than treatment. I walked into his office wearing and a sunvisor with sunglasses over my regular glasses and touching my cheek to keep my head from turning. The moment he saw me, he said, "I know what's wrong with you." He explained what there was to know about dystonia, named the two kinds that I had, and said I was a classic case. At that point I didn't even care that there was no cure and that I might need to get injections in my neck and eyelids. I was just relieved that someone recognized my condition and that it had a name (or names). So in a way I got lucky that the torticollis (now almost totally under control from the Artane) developed at the same time as the blepharospasm since it was more obviously a neurological disorder. Sorry to be so long-winded. I'll come back with more later--I could write a book about my experiences. I'm also addicted to bulletin boards. Glad I found this one just as Deja.com shut down!Carol P.S. Does anyone else see a connection between BEB and dry eyes?
Re: BEB and Artane vs. Botox
Welcome to the board, Carol and I hope that you will find alot of useful information here. I don't know what I would have done without having found this place. It's like one big family.I have had blepharospasm for about 4 years and have botox injections every 3 months until I started taking artane. I now can go maybe a month longer or sometimes as long as 2 months longer and that is the only reason that I use the artane, to prolong getting the injections. I feel very strange on the artane. I really feel that it causes short-term memory, but I still will go on it when I feel that the injections have completely left my body. I wish you the best and hope that you will continue coming to this board. You can find almost anything here from humor to support for a disease that most people have never heard of. Carolyn
Plano, Tx
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