ASK DR. BAUGHAN                                             July 16, 1999

A LITTLE BIT OF POISON

“Please write about benign essential blepharospasm,” a reader asked.

Imagine that one day one of your eyes started to twitch.  Just a blink, really, and maybe you think that you must be overtired, maybe you strained your eyes.  Otherwise you feel ok, and your vision is all right.  Over the next several weeks or months, though, the twitching becomes more frequent.  It happens whenever you are awake, and is worse with exposure to bright lights or stress.  If you focus real hard on what you are doing, you may be able to control it for a little while, so you think you just need to concentrate.  But your family, friends, and co-workers start looking at you funny.  At first they are concerned, “What’s the matter with your eye?”  When it continues, they say, “You should get that checked.”  “But I feel ok, it will probably go away,” you answer.  Then they get annoyed and uncomfortable because it is very odd, and they think you should be able to control it.  People start staring on the street.  Kids in the stores ask their mothers, “What’s wrong with that person?”  The spasms become so frequent or they last so long that you realize you can’t see very well.  It isn’t safe for you to drive.  You can’t read.  You start to panic, and the symptoms get worse.  This convinces you even more that it “must be all in your head.”  Eventually it gets so bad that you are functionally blind from prolonged or rapid blinking.  You rarely leave the house because it is so socially embarrassing.  No employer can bear to look at you for more than five minutes.  This eye twitch has taken over your life.

No one dies from benign essential blepharospasm.  People who have it are miserable, though.  Doctors do not know the cause.  Part of the brain for some unknown reason starts continually firing signals to the muscles that cause blinking.  Until recently, there were few treatments that worked very well.  A long list of medicines were tried, muscle relaxants, Parkinson’s Disease medicines, tranquilizers, and they would work for a few people.  Not until someone took a rather bold step and tried a powerful poison did a treatment work for more people.

Almost all medicines are poisons if taken in excess.  It is a different approach, though, to think, “If a poison is taken in very small amounts, it might be therapeutic.”  Botulism is a deadly disease contracted by eating foods contaminated with the toxin released by the bacteria Clostridia botulinum.  It causes widespread paralysis and shut-down of the nervous system.  About 10 years ago, a researcher started experimenting with injecting tiny amounts of the toxin into the muscles of patients with diseases involving persistent spasm, such as the larynx, face or eyelids.  This toxin, called Botox as a medicine, is now the first line treatment for benign essential blepharospasm.  It blocks the nerve signals to the muscles.  It works in about 90% of patients.  Each injection may last 3-4 months.  The possible complications involve relaxing the eye muscles too much, causing a droopy eyelid or double vision.  Some people develop antibodies to the toxin, and it no longer works or they get an allergic-like reaction.  The type of doctors who give the injections include neurologists, ear-nose-and-throat specialists, and ophthalmologists.  Your personal physician can help find the nearest doctor who uses Botox.

For those for whom Botox does not work, there is a new treatment approach being studied using a drug called Doxil, or doxorubicin, that damages part of the muscles that twitch.  Currently a study at the University of Minnesota is recruiting patients.  Contact Jonathan D. Wirtschafter, M.D., Dept. of Ophthalmology, University of Minnesota, FUMC Box 493, 420 Delaware St. SE, Minneapolis MN 55455-0501, telephone 612-625-4400.

For more information, contact the Benign Essential Blepharospasm Research Foundation at P.O. Box 12468, Beumont, Texas 77726-2468, telephone 409-832-0788.  They sponsor an annual conference, publish a newsletter, and help coordinate support groups.  Support group coordinators for this region include Jan and Mark Sylor at 603-888-3998 and Polly Dyer at 207-892-4301.