June 24, 1998
Rare eye condition leads resident to support others
By Jan Hoffbauer
Correspondent
''For two years I couldn't keep my eyes open. They would just clamp shut,'' said Tiffin resident Doris Maiberger.
Doris explained what she went through during the last six years in her search for answers to why her eyes would involuntarily close when she sat down to watch television, to read, or any other inactive task.
''For two years the doctors treated me for dry eyes. They tried different medicines, even eye serum made from animals,'' she said.
While Doris waited for a diagnosis, some relief came through listening to books.
''At least I could sit and listen to books on tape. The tapes would come right to the house. If I were talking to someone my eyes would stay open, but when watching television or driving or riding it was hard to keep them open.''
After trial and error with different medicines and doctors, Doris was finally diagnosed as having Benign Essential Blepharospasm. It is a chronic, unremitting, bilateral, variable progressive, neurologic dysfunction in the motor control center of the brain.
Early symptoms of BEB may be occasional increased winking, blinking or squinting of one or both eyes, or simply an increasing difficulty in keeping the eyes open. As the condition worsens, it may involve muscle spasms of the lower face, mouth, tongue, throat and sometimes the respiratory system. The voice can then become affected.
The problem in diagnosis is that the symptoms vary in practically every patient. The spasms can affect the eyes in one person, or the vocal cords in another. The cause is unknown, but suspected genetic causes are a chemical imbalance, or brain lesions that may cause a misfiring of neurons in the brain, according to Doris.
''One woman had it so bad that her mouth muscles clamped shut, and she had broken bones. She started on Botox, had plastic surgery and feels like a new person.
''Botox is a wonder drug. It is a purified poison, a form of botulism. I get the Botox shots around my eyes every three months, and I receive throat injections every six months,'' said Doris who has received some relief from the costly treatment.
''I take medicine too, but a lot of people don't. Only 10 to 15 percent can take the medicine because of the side effects. One medicine I took created other problems. I lost 30 pounds in a couple months, and lost some memory. When the doctor found that the medicine was causing my problems, I said I would never complain about weight again.''
''I go to a neurologist in Detroit now. I was diagnosed by a doctor in Columbus, but they didn't do much with throat injections at that time,'' Doris said.
The treatment for BEB has helped Doris to be hopeful that she can resume some of her normal activities. ''I used to walk two to three miles, five days a week. I couldn't do that for years. I still don't see myself able to walk like that again.''
Doris' husband, Bob, helped by taking over some of the household chores.
''Bob is retired now. He still cooks, but I hope to go back to cooking. I can still knit, by looking down,'' Doris said.
Doris has received brochures to explain this rare illness, which is a form of Dystonia. Dystonia is a symptom consisting of sustained, involuntary contracations of the muscles in one or more parts of the body.
''I was glad to see that literature because I wondered why I could do some things and not others,'' Doris said.
One article said that the intensity of stimulation to the visual system affects the eye closure. Watching television, reading or driving require intense visual use, generally with bright lights and changing patterns. Other activities such as: cooking, ironing and gardening are more relaxed and only involve intermittent use of the eyes.
Since BEB affects her respiratory system and breathing, Doris does not visualize regaining her walking practice but the more she discovers about the illness, the more thankful she is for the progress she is making.
''It is benign, so you won't die from it, but you will die with it. I get a lot of encouragement from the support groups in Detroit and Columbus,'' she said. For more information, call Doris at 447-4626.