Excessive Eye Blinking and Squeezing May Be a Movement Disorder Called Blepharospasm
What Is Blepharospasm?
The time is more than a quarter century ago, in the late '80s. You’ve become aware your blink reflex is overactive. Sometimes it’s worse than others, your eyes blinking so fast it’s difficult to see. This out-of-control blinking is uncomfortable. When you confide in a friend how much it bothers you, she says she monitors the state of your life by how fast your eyes blink. She thinks the excessive blinking is caused by tension. Since you’re coping with a lot of problems at the time, you tend to agree.
A couple of years pass, and fast blinking continues even though your life is relatively calm. What’s going on here?
Also, your eyes seem more than ordinarily sensitive to sunlight. You can’t leave the house without sunglasses, even when the day is overcast. Your eyes clamp tightly shut in glare or bright interior light.
A few years later, the squeezing begins. Your eyes squeeze tightly shut intermittently with fast blinking. Your brain tells your eyes to open, but the message apparently isn't relayed to the muscles that control your eyelids. Walking down the hall, you bump into a wall because your eyes are squeezed shut and refuse to open. This is getting scary!
Driving on freeways becomes hazardous because you must hold one eyelid open with your hand while you drive with the other hand, and this isn’t easy. The eyelid you’re holding open seems to be fighting hard to close.
It’s become more difficult to read a book or watch a movie because focusing on the page or screen seems to make the eye squeezing worse. You notice that while you’re watching a person who is talking to you, your eyes are “going crazy” with blinks and squeezing, but when you reply, your eyes stay open while you are talking…only to revert once you stop. Your occupation requires you to talk with people all day, so the effect on others of what’s happening with your eyes worries you. Might this affect your job?
You feel as if you’re going crazy, and make an appointment with your doctor. He's mystified by your symptoms, and thinks they may be caused by job stress. He prescribes a benzodiazepam drug, Xanax®, and refers you to a biofeedback lab to help you learn relaxation.
The Xanax®, which is quick-acting, helps, but the biofeedback doesn’t. At this time, you haven’t learned of the problems caused by long-term use of benzos, particularly Xanax®, so you keep getting the prescription refilled. When you return for your next appointment, your doctor tells you he's been playing detective. He discussed your symptoms with a neurology colleague, and the neurologist suggested your problem might be blepharospasm. This is a new diagnosis to your primary care physician, who never heard of it before. (In the late '80s and early '90s, most general practitioners weren’t familiar with what was then thought to be a fairly rare disorder.)
The Next Step
Your PCP refers you to a neuro-ophthalmologist at a large teaching hospital, where you are tested and diagnosed with bilateral essential benign blepharospasm. Bilateral means it happens on both sides of the face. The word "essential" refers to blepharospasm being of unknown origin (although some research in the past decade shows there is a genetic component in about 10% of BEB cases). "Benign" means it is not life-threatening. The word "blepharospasm" means eyelid spasms, not to be confused with mild twitches. These spasms are strong and squeeze the eyelids tightly shut.
A secondary diagnosis of Meige syndrome, the name for spasming in the mandibular area, is made because you’ve begun to have spasms around your nose and mouth. (You think of these as your “Bewitched” nose twitches and haven’t previously connected them to the eye-blinking-and-squeezing issues.) These are movement disorders under the umbrella diagnosis of “dystonia.”
While it is comforting to know you aren’t crazy, and to have a real diagnosis for the strange symptoms that have troubled you for years, the news that your movement disorders are incurable saddens you. The usual treatment for blepharospasm and Meige syndrome is for the patient to undergo regular injections of a medical solution of botulinum in the muscles that produce spasms.
Yes…the same toxin that can kill a person if ingested in a larger dosage is injected in minute quantities into the muscles that spasm to cause their temporary paralysis. You are informed the toxin (for that is what it is) does not migrate from the muscles into other areas, so the procedure is safe. It’s been successfully used for this purpose for more than ten years.
This specialist agrees that oral medications can be helpful, so you continue taking Xanax®, which you will later regret. (Also later, research shows that benzos can actually cause irreversible blepharospasm and other dystonias.)
Your first series of Botox® injections, the brand name given by the pharmaceutical firm Allergan to this medical version of botulinum, is disappointing. You receive more than 20 injections into the corners of your eyes, your upper eyelids and the area beneath your eyes, across and above your brows, your cheeks, not to mention the tougher skin on the sides of your nose, and these are quite painful. From the beginning of your treatment, you require a full vial of Botox®, which will never vary. You are motivated to stop the spasms, so you don’t complain. The doctor who administers the shots is very kind.
He tells you the injections may initially take up to a week to take effect, but you expect faster results anyway. That week seems like one of the longest in your life, and you’ve almost given up hope when you awake one morning with eyes that are difficult to close! You must use lubricating eye drops because no blinking at all causes painful dry eyes, but this seems like a fair tradeoff. You keep looking in the mirror at eyes that stay wide open. How wonderful is something you took for granted most of your life!
Unfortunately, the results suddenly wear off much too soon. You were told they should last from two to three months, but after three weeks you’re back to square one. There follow, for the next year of your life, series of injections every three weeks to keep you functional. You read about people with untreated blepharospasm becoming suicidal, and decide that getting holes stuck in your face like a pincushion every three weeks isn’t so bad.
At the time you're beginning your treatment, it is feared a patient will build up antibodies to medical Botox® if a lot is used frequently; this theory has since been discarded. The specialist in charge of your treatment tells you about a surgery called a limited myectomy, in which nearly all of the muscles around the eyes are removed, leaving only a thin strip to allow the eyes to close. Since your blepharospasm seems resistant to Botox®, this surgery might help. While it can’t be guaranteed you will gain enough relief not to need injections, the squeezing will stop.
You decide to have the surgery. You take one last look at your pre-surgery eyes—eyes which have always been your best feature. You’re told their configuration will change with the myectomy. The areas where muscle (and fatty tissue) now soften your eyes will look like skin stretched tightly over bone. You’ve seen post-surgical photos of other myectomy patients, so you know what to expect. Alas…vanity must be sacrificed to medical necessity.
The surgery stops the eyes’ tight squeezing, but the spasms continue. Botox® injections are resumed six weeks later. They will, unless research finds a cure, be a part of your life from now on. The surgery also produces a trade-off that causes you frequent pain from extreme dry eyes and resulting corneal abrasions. These occur because your eyes no longer close tightly while you’re asleep. Air, particularly from central heat, air conditioning and fans, abrades your eyes and causes intense pain. You learn very quickly to coat your eyeballs with an ophthalmolgic ointment every night (purchased online from drugstore.com at the best price found for this tiny tube) and weight your eyes shut with a folded damp bath cloth. This becomes your routine, replacing a nightly “beauty” regimen, but preventing “blistered” eyes is worth the trouble.
You join the Benign Essential Blepharospasm Research Foundation and the BEBRF online support group to learn all you can about BEB. You also try to be of help and comfort to people recently diagnosed. You remember all too well the confusion and sorrow you felt!
A few years ago, you—like others suffering from blepharospasm and additional movement disorders that require medical Botox® treatment—became indignant about all the media attention devoted to the cosmetic use of botulinum to prevent or reduce wrinkles. Why doesn’t medical Botox® get equal media attention? That’s easy to answer. Cosmetic Botox® is sexy; medical Botox® is not. The BEBRF once tried to interest Oprah Wimfrey in devoting one of her shows to BEB, but it did not happen. You pitch an article about the differences between therapeutic and "esthetic" use of Botox® to numerous print publications and try to get Oprah, Anderson Cooper, The View and other talk shows interested in featuring its medical use. No one was interested.
Recently, you watched an old movie starring Sally Fields and Michael Caine, in which Fields’ character blinks her eyes excessively. Someone says she has “blepharospasm,” and her eyes blink a lot every time she tells a lie! This patent untruth infuriates you! It’s bad enough that every book or article about body language insists a person who won’t make eye contact is not to be trusted. In point of fact, you know that avoiding eye contact (not focusing on another’s eyes) is the BEB sufferer’s way of preventing severe eye spasms when listening to another person talk. You can only hope more education about movement disorders in general (of which Parkinson’s Disease is a “cousin”) and benign essential blepharospasm in particular will correct the misinformation out there.
In the meantime, you feel fortunate that medical Botox® continues to work for you, and the pain of injections has been greatly diminished by preparation of the treatment area with lidocaine. You were weaned off Xanax® years ago, and the oral prescription medication you take to bolster the effect of your injections isn’t dangerous. You’ve adjusted to life with BEB, realizing there is unlikely to be a cure in your lifetime. Perhaps it will happen for the next generation of people diagnosed with blepharospasm. You fervently hope so.
UPDATE: I want to thank the BEBRF Newsletter for featuring a copy of this article in their September/October 2012 issue (Volume 31, Number 5). I was very pleased to give the BEBRF permission to reprint my story in hopes it will prove helpful to others who cope with Blepharospasm.
The BEBRF is a wonderful organization that exists to fund valuable research, give support to Blepharospasm patients and their families, as well as to educate the public about this condition. Thanks, BEBRF, for all you do!
Online Support Group for Blepharospasm Patients
© 2011 Jaye Denman