My Experience With Blepharospasm and Uncontrollable Eye Blinking
Life With Blepharospasm
The time is more than a quarter-century ago, in the late '80s. I’ve become aware my blink reflex is overactive. Sometimes, my eye blinks so fast it’s difficult to see. This out-of-control blinking is uncomfortable, and when I confide in a friend, she says she monitors the state of my life by how fast my eyes blink. She thinks the excessive blinking is caused by tension. Since I'm dealing with a lot of problems, I agree.
A couple of years passed and the fast blinking continued, even though my life was relatively calm. What was going on?
What's more, my eyes seemed more than ordinarily sensitive to sunlight. I couldn't leave the house without sunglasses. My eyes clamped tightly shut whenever they were hit with a glare or bright interior light.
A few years later, the squeezing began. My eyes squeezed tightly shut intermittently, and I was still dealing with the fast blinking. My brain would tell my eyes to open, but the message apparently wasn't relayed to my eyelids. Walking down the hall at work, I bumped into a wall because my eyes were squeezed shut and refused to open. This was getting scary!
Driving on freeways became hazardous because I had to hold one eyelid open with my hand while I drove with the other hand. The eyelid I was holding open seemed to be fighting hard to close.
It had become difficult to read a book or watch a movie because focusing on the page or screen seemed to make the squeezing worse. I noticed that while I was looking at a person who was talking to me, my eyes went berserk, blinking and squeezing, but when I replied, my eyes stayed open. Once I stopped talking, though, the involuntary twitches started again. My occupation required me to talk to people all day. Might this affect my job?
I felt as if I was going crazy and made an appointment with my doctor. He was mystified by my symptoms and thought they could be caused by stress. He prescribed the benzodiazepam drug Xanax and referred me to a biofeedback lab that would help me learn to relax.
The Xanax, which was quick-acting, helped, but the biofeedback didn’t. At this point in time, I hadn’t learned of all the problems associated with the use of benzos, particularly Xanax, so I kept getting the prescription refilled. When I returned for my next appointment, my doctor told me he had been playing detective. He had discussed my symptoms with a neurology colleague, and the neurologist suggested the problem might be blepharospasm. This was a new diagnosis to my primary care physician, who had never heard of it before. In the late '80s and early '90s, most general practitioners thought blepharospasm to be a fairly rare disorder.
What Is Blepharospasm?
My doctor referred me to a neuro-ophthalmologist at a large hospital, where I was tested and diagnosed with bilateral essential benign blepharospasm.
"Bilateral" means it happens on both sides of the face. The word "essential" refers to the blepharospasm being of unknown origin (although some new research suggests there is a genetic component in about 10% of blepharospasm cases), and the word "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.
I got a secondary diagnosis of Meige syndrome, which is spasming in the mandibular area because I began to have spasms around my nose and mouth. I hadn’t previously connected these to my eye-blinking-and-squeezing issues, but it turns out both of these conditions fall under the umbrella diagnosis of dystonia, also known as movement disorders.
While it was comforting to know I wasn't crazy, the news that I had two incurable movement disorders saddened me. These conditions were treatable, though. The usual treatment for blepharospasm and Meige syndrome was to undergo regular injections of botulinum, targeting the muscles that produced the spasms.
Treatment via Injection
The recommended treatment for these disorders was therapeutic botox. The botox solution was injected in minute quantities into the muscles that spasmed, causing their temporary paralysis. The procedure was safe and had been successfully used for this purpose for more than 10 years.
The botox specialist agreed that taking oral medications could be helpful, so I continued taking Xanax, which I would later regret. (Research shows that benzos can actually cause irreversible blepharospasm and other dystonias.)
My first series of botox injections was disappointing. I received more than 20 injections into the corners of my eyes, upper eyelids, the areas beneath my eyes, above my brows, cheeks, and the sides of my nose. These were quite painful. I required a full vial of botox, but I was motivated to stop the spasms, so I didn't complain. The doctor who administered the shots was very kind.
He told me the injections could take up to a week to take effect, but I expected faster results anyway. That week seemed like one of the longest in my life, and I had almost given up hope when I woke one morning with eyes that were difficult to close! I had to use lubricating eye drops because not blinking caused painful, dry eyes. This seemed like a fair tradeoff. I kept looking into the mirror at eyes that stayed wide open. I was extremely happy with something most people took for granted.
Unfortunately, the results wore off much too soon. I was told they should have lasted for two to three months, but after three weeks, I was back to square one. Thus, for the next year of my life, I required injections every three weeks to stay functional. I read about people with untreated blepharospasm becoming suicidal and decided that allowing my face to be a pincushion for botox needles every three weeks wasn't so bad.
The specialist in charge of my treatment told me 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 my blepharospasm seemed to be somewhat resistant to Botox, this surgery could help, the specialist said. While it wasn't be guaranteed I would get enough relief from the surgery to stop receiving injections, the squeezing would stop.
Treatment via Surgery
I decided to have the surgery. I took one last look at my pre-surgery eyes—eyes which had always been my best feature. I was told their configuration would change with the myectomy. The areas where muscle and fatty tissue now softened my eyes would look like skin stretched tightly over the bone. I had seen post-surgical photos of other myectomy patients, so I knew what to expect. Alas, vanity had to be sacrificed.
The surgery stopped the tight squeezing, but the spasms continued. Botox injections were resumed six weeks later. They would, unless research found a cure, be a part of my life from now on. The surgery also caused frequent pain from extremely dry eyes, and, because of this, corneal abrasions. These occurred because my eyes no longer closed tightly while I slept. Air, particularly from central heat, air conditioning, and fans, abraded my eyes and caused intense pain. I learned very quickly to coat my eyeballs every night with an ophthalmologic ointment I purchased online, and to hold my eyes shut with a folded and dampened bath towel. This became my routine, replacing a nightly beauty regimen, but preventing blistered eyes in the morning.
I joined the Benign Essential Blepharospasm Research Foundation (BEBRF) and learned all I could about blepharospasm in the online support group. I also tried to help and comfort people who had been recently diagnosed. I remember all too well the confusion and sorrow I felt and wanted to lend a helping hand.
Blepharospasm in Popular Culture
A few years ago, I—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 attention? That’s easy to answer. Cosmetic Botox is sexy, and medical botox is not. The BEBRF once tried to interest Oprah Winfrey in devoting one of her shows to BEB, but it didn't happen. I pitched an article about the differences between therapeutic and esthetic uses of Botox to numerous print publications and tried to get Oprah, Anderson Cooper, The View, and other talk shows interested. But to no avail.
I recently watched an old movie starring Sally Fields and Michael Caine, in which Fields’ character blinks excessively. Another character in the film says she has “blepharospasm and her eyes blink a lot every time she tells a lie!" This patent untruth infuriated me! It’s bad enough that every book or article about body language insists that a person who won’t make eye contact is not to be trusted. But avoiding eye contact is the blepharospasm sufferer’s best way to prevent severe eye spasms when listening to another person talk.
I can only hope more education about movement disorders (of which Parkinson’s Disease is a cousin) and benign essential blepharospasm, in particular, will correct the misinformation.
I felt fortunate that medical Botox continued to work for me, and the pain of injections had been greatly diminished by preparing the treatment area with lidocaine. I weaned off Xanax, and the oral prescription medication I took to bolster the effect of my injections wasn't dangerous in any way. I had adjusted to life with BEB, realizing it was unlikely that a cure would be discovered in my lifetime. Perhaps it will happen for the next generation of people diagnosed with blepharospasm. I fervently hope so.
Online Support Group for Blepharospasm
If you are experiencing blepharospasm and would like to talk to others like you, check out this online support group.
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 BEBRF permission to reprint my story in the hopes it will prove helpful to others who are living with Blepharospasm.
BEBRF is a wonderful organization that exists to fund valuable research, support Blepharospasm patients and their families, and educate the public about this condition. Thanks, BEBRF, for all you do!
Questions & Answers
© 2011 Jaye Denman