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My Experience With Blepharospasm and Uncontrollable Eye Blinking

Here is the path I took that ultimately brought me to an effective treatment for blepharospasm.

Here is the path I took that ultimately brought me to an effective treatment for blepharospasm.

Life With Blepharospasm

The time: more than a quarter-century ago, in the late '80s. I became aware my blink reflex was overactive. Sometimes, my eyes blinked so fast that it was difficult for me to see. This out-of-control blinking was uncomfortable and embarrassing. When I confided in a friend, she said that she monitored the state of my life by how fast my eyes blinked. She assumed the excessive blinking was caused by tension. Since I was dealing with stressful situations at the time, I agreed.

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.

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 non-dominant hand while I drove with the other hand. The eyelid I was holding open seemed to be fighting hard to close.

It became 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 benzodiazepine drug Xanax and referred me to a biofeedback lab for treatment that might help me relax.

The fast-acting Xanax 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 discussed my symptoms with a neurology colleague, and the neurologist suggested the problem might be a movement disorder known as blepharospasm.

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 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 received a secondary diagnosis of Meige syndrome, which is spasming in the mandibular area because I began to have light 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 to cause temporary paralysis.

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 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.

Treatment Via Injection

The recommended treatment for these disorders was therapeutic Botox©. The solution was injected in minute quantities into the muscles that spasmed, causing their temporary paralysis. The procedure was safe and had, at that time, been successfully used for this purpose for more than ten years. (cosmetic Botox is a well-known treatment for the prevention of facial wrinkles these days, but back then, the toxin was only used for medical purposes.)

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The specialist agreed that taking oral medications could be helpful, so I continued taking prescribed Xanax, which I would later regret. (Research shows that benzos can actually cause irreversible blepharospasm and other dystonias.)

My first series of 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 for every treatment, but I was motivated to stop the spasms and 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 trade-off. 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 the muscle paralysis 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 become a pincushion for hypodermic needles every three weeks wasn't so bad.

The specialist in charge of my treatment told me about a surgical procedure known as 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 botulinum, this surgery could help. While it wasn't guaranteed I would gain enough relief from the surgery to stop receiving injections, the squeezing should stop.

The surgery stopped the tight squeezing, but the spasms continued.

The surgery stopped the tight squeezing, but the spasms continued.

Treatment Via Surgery

I agreed to undergo the surgery. I took one last look at my pre-surgery eyes—eyes which "pre-blepharospasm" had been my best feature. I was told their configuration would change with the myectomy. The areas where muscle and fatty tissue 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 for function and comfort.

The surgery stopped the tight squeezing, but the spasms continued. Botox injections were resumed six weeks later. Unless research found a cure, I expected them to be a part of my life from then on. A side effect of the surgery caused frequent pain from extremely dry eyes, often resulting in 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 ophthalmic ointment and to weight my eyes with a folded and dampened bath towel to protect them from the air. This became my routine, replacing a nightly beauty regimen, but preventing blistered eyes most mornings.

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 remembered all too well the confusion and sorrow I felt about my diagnosis and wanted to lend a helping hand.

A few years ago, I—like others suffering from blepharospasm and additional movement disorders that require medical botulinum treatment—became indignant about all the media attention devoted to its cosmetic use for the prevention or reduction of wrinkles. Why doesn’t medical Botox© get equal attention? That’s easy to answer. The cosmetic variety is sexy, but its medical use 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 TV talk shows interested—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 books and articles about body language insist that a person who won’t make eye contact is not to be trusted--propaganda that negatively affects BEB sufferers. I learned through personal experience that avoiding eye contact is the blepharospasm sufferer’s best way to prevent severe eye spasms when listening to another person talk and I know that it affects so many others in the same way. This behavior has nothing to do with the trustworthiness of someone who has blepharospasm.

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 on a broad scale.

Acceptance

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 topical lidocaine. After several years, the Xanax prescription I'd been taking for so long was changed to clonazepam (brand name Klonapin®), a longer-lasting oral medication with an anti-spasmodic effect. Unfortunately, I didn't realize (and was not told by the doctor) that it is also a benzodiazepine and should not be taken long-term.

I had adjusted to life with BEB, realizing it was unlikely a cure would be discovered in my lifetime and hoping it would happen for later generations of people diagnosed with blepharospasm.

In my own situation, I planned to be slowly weaned off clonazepam over a period of weeks and make do with the injections alone. That was when--just my luck--Botox stopped working for me altogether. The ophthalmologist who had treated me for years said he had nothing left to offer me. Without the injections, I had only the benzo prescription to control my spasms to a degree. There was a delay in plans while I began the search for a new doctor, but my intent was still to safely withdraw from the benzodiazepam I'd been taking for so many years.

WARNING: I know that a lot of BEB sufferers benefiting from medical Botox also take benzos, particularly Ativan, but I urge you to find a doctor who will use a different oral medication that does not pose any dangers with long-term use. Above all, do not try to wean yourself off of benzos without medical supervision, which is very dangerous and can cause seizures.

I finally broke free from the harmful bonds of physician-prescribed benzos, but that's another story. Whenever I hear or read about anyone taking any type of benzo for more than two weeks, I share my warning.

A Happy Ending for Me with Neuroplasticity

In 2017, I read a book by Dr. Norman Doidge that introduced me to the concept of neuroplasticity—the brain's remarkable ability to restructure and heal itself by creating new neuronal pathways. It was so exciting that I continued to read and research these groundbreaking noninvasive methods of healing neurological problems. My reading led me to learn of Dr. Joaquin Farias and his protocol for treating dystonias with neuroplasticity.

Dr. Farias practices in Toronto, Canada, and it was not feasible for me to go there for treatment. However, I kept searching online for new information about his pioneering techniques. In 2019, my wish came true when I found Dr. Farias' website with his neuroplasticity technique to treat blepharospasm and other dystonias. I signed up to perform the online exercises developed to retrain the brain and heal or reduce blepharospasm. The cost was minimal, for which I was grateful, and I could do the work online at home on my own schedule.

The exercises for my eyes were easy to do. Some were a bit uncomfortable but not painful, and I was highly motivated to perform them regularly. I wasn't sure how long it might take for me to experience some relief, and I tried to limit my expectations so I would not be devastated if this didn't work for me.

Imagine my astonishment—and unbridled joy—when, after 31 years of fighting a battle with my eyelids, the spasms ended! Completely. Stopped.

My sensitivity to light, especially bright sunlight, remains. Also, I still have the extreme dry-eye problem that was created by surgery but am able to manage it adeptly with protective ointment before I go to sleep and lubricating eye drops a couple of times during the day. These are comparably minor issues when I think of how blepharospasm affected my life for so long.

I hope all blepharospasm sufferers who read this article will search out the Farias Technique of Neuroplastic Movement Treatment. (See link below.) While there is no guarantee that neuroplasticity will heal blepharospasm for everyone who tries it, the cost of the Farias Technique online is reasonable, and there is a strong possibility that it may change your life for the better. I wish you the best!

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.

  • Dystonia Treatment
    The Farias Technique is a noninvasive, natural, movement therapy, that painlessly retrain the brain so it rebuilds correct mind-to-muscle connections.

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!

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Questions & Answers

Question: Does Blepharospasm contribute to eyes closing while eating?

Answer: The disorder can make the eyes close, squeeze tightly shut, or blink rapidly when the person focuses on something such as eating food, reading a book, watching TV, driving a car, etc.

Question: My 43-year-old daughter has been diagnosed with blepharospasm and uncontrollable eye blinking. She can't drive or work; it's terrible. She lives near Richmond, Virginia. Do you know of any doctors in the area or in nearby states that can help her?

Answer: Neurological Associates has locations in Richmond, Emporia, and Midlothian and has neuro-ophthalmologists on staff that treat blepharospasm. They give medical Botox injections for BEB, which usually benefits the patient so that she or he can function. When your daughter is outdoors, or even indoors with bright light, the light sensitivity that affects most people who have BEB can be helped by wearing glasses with special lenses that filter the glare. They are sold on axonoptic.com and can also help migraine sufferers. Best wishes to your daughter. I know the diagnosis at that age can be devastating, but tell her that she has an excellent chance of improving significantly.

© 2011 Jaye Denman

Comments

Jaye Denman (author) from Deep South, USA on February 08, 2015:

Thanks for sharing your story, Veronica. I can understand how it makes you feel to get the diagnosis at the age of 30 because I was nearly 20 years older when finally diagnosed (though I'd had symptoms longer) and I had similar feelings.

Since BEB affects individuals in different ways, I encourage you to join the BEBRF Bulletin Board so you can learn from others and ask questions. The board is very helpful, especially when the situation is new to you.

By the way, my case was very resistant to medical botox in the beginning, and I had to get the shots even more frequently than every eight weeks. However, that situation improved over time. I now go months between injections. I hope things will get much better for you.

I think everyone who is newly diagnosed goes through a stage of disbelief, denial, even anger. That's natural. Believe it or not, once you're getting all the help you need that will allow you to function at your best and without discomfort, you will adjust and learn to live with BEB.

Best wishes to you! Jaye

Veronica on February 07, 2015:

I have had BEB for a little over 2 yrs and I'm 30 yrs old. It started as slight twitch in one eye that progressive got worse. I went to several doctors and they ran several test. I had brain scans done and so went to a regular eye doctor who told it was dry eyes. Another doctor told me it was stress and prescribed me xantex XR. I know people don't want to be on context but the X-ray is less habit forming and it actually does help calmy twitches so for me its aust have for this condition. I only take it when I'm twitching tho! Finally after a ur of dealing with the twitching I was referred to a neuro optho and he diagnosed me with BEB and started the Botox. The longest the injections ever lasted for me was about 8 weeks. The last injection I got nerver stopped the twitching sou next option is the super dose. Sometimes I womder of I even have BEB because I've mever hady eyes close on me or excessive blinking just twitching. I have noticed a few spasms in other areas of my face tho so perhaps it is. Either way I've started taking magnesium supplements because i read that a defiency can cause facial ticks. At this point what do I have to lose. I can't imagine at 30 having to deal with this for the rest of my life and knowing that it only will get worse is depressing. Good luck to you all and playfully a cure will come sooner than later! Good bless

Jaye Denman (author) from Deep South, USA on July 13, 2014:

Bless your heart, Jerod. I'm sorry you're having to cope with blepharospasm at a young age. There are many dystonias (movement disorders) and many of them target children and teens. However, blepharospasm isn't diagnosed in youths as often as it is in older people.

I was diagnosed in my late 40s (and just turned 71 last month), so I've been living with the disorder for a long time. If it's any comfort to you, I worked at a very demanding and stressful job until I was in my 60s. The combination of injections that temporarily paralyze the spasming muscles and various oral medications (your doctor will choose the best for you) plus learning to control stress by meditation, yoga, soothing music, etc. can help you live a normal--well, almost normal--life.

I'm not going to kid you. The sensitify to sunlight and any type of bright light or glare is almost as tough to deal with as the spasms. I encourage you to go online to the BEBRF bulletin board, join, ask questions, read posts and learn everything you can about BEB. There is a special type of sunglass tint that helps people with this condition, and people on the bulletin board will tell you about it.

Also, the Foundation will send you books and videos that teach you about this disorder. And researchers are learning more and more all the time. Depending on where you live, there may be a support group near you. If so, I heartily recommend you check it out. Being with other people who are coping with the same issues that you are is very helpful. It also lets you know that you're not alone.

In addition to the BEBRF newsletter, which you can subscribe to through the Foundation, there is also a separate newsletter from the Dystonia Foundation that includes some info about BEB, but even more, has photos and articles about kids of all ages who cope with various movement disorders.

Good luck, Jarod. And if you ever need to ask me any questions (or just want to 'hang', as my grandkids say), stop by again. After you've checked out the online bulletin board and other resources, I hope you will come back and tell me how you're doing.

Best wishes and a virtual hug....Jaye

Jerod on July 13, 2014:

I'm just a kid and have recently been diagnosed with this disorder.

Jaye Denman (author) from Deep South, USA on June 11, 2014:

Thanks, Shyron - This is not a disorder that is well-known, but too many people around the world have it to call it a 'rare' disease. Fortunately, it's treatable, although there are times when one's body seems to resist the treatment. If lucky, they don't happen too often.

You're right about driving, but that's because a symptom is extreme photosensitivity, not only to actual sunlight or glare, but even the light of an overcast day. It requires special sunglasses to go outdoors.

Thanks for reading, voting and sharing.

Jaye

Shyron E Shenko from Texas on June 11, 2014:

Jaye, I have never heard of this condition, I can only imagine the hell of driving with this condition. You have done your readers a great service by writing this and I for one appreciate your writing this. I treasure my eyes.

Blessings to you dear friend.

Voted up, UAI, and shared

Jaye Denman (author) from Deep South, USA on July 10, 2013:

Thanks, Peggy, for reading the article and for your feedback. I've had BEB for more than two decades now, so I'm adapted to it. This is not a well-known disorder, so many sufferers have no idea what is wrong with them when their symptoms begin. Without treatment, one can be miserable, stressed-out and functionally blind. (When your eyes are closed, you can't see--even if your vision would be 20-20 with open eyes.) The treatments available help people with Blepharospasm function normally (or, almost so) and alleviate the stress. Thanks for the vote and for sharing. The more people who know about BEB, the more likely they can help someone who needs diagnosis and treatment.

Regards,

Jaye

Peggy Woods from Houston, Texas on July 10, 2013:

Hi Jaye,

You have written an excellent article here about a serious subject. So sorry that you and others like you have to contend with the effects of having Blepharospasms. At least you are shedding some light on some treatment options and what can be done to safely sleep at night while protecting your eyes. Hope they come up with even better treatment options in the future. Up votes ++ and will share this informative hub with others.