When Eyes Blink Excessively or Squeeze Shut...It Could be Blepharospasm
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What is blepharospasm?
©Copyright by Jaye Denman. All rights reserved.
The time is 25 years ago. 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. (Twenty years ago, 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. "Benign" means it's not life-threatening. The word "blepharospasm" means eyelid spasms, not to be confused with mild twitches.
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 set of Botox (for that is the brand name given by the pharmaceutical firm Allergan to this medical version of botulinum) injections 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 is since 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 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 other movement disorders that require medical Botox treatment—became indignant about all the media attention devoted to the cosmetic version used 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.
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 eye spasms. 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 medicine you take to bolster the effect of your Botox 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.
NOTE TO READERS: I will appreciate it very much if you vote and also comment, regardless of whether your comment is positive or negative. If negative, I hope you will give me some constructive criticism that will help me to become a better writer. Thanks!
Online support group for Blepharospasm patients
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Thanks for reading and for the comments, Hyphenbird...Most people who don't know someone with the disorder are unfamiliar with it, but it isn't one of the really rare conditions. I think there are people who actually have it but aren't aware what is wrong with them, which is why I wrote the hub. JAYE
Goodness!!! what a great informative well written piece..
not to mention I think My neice may have this and my middle child..is this an inherited trait?
thanks for sharing
jorja
Thanks for reading and commenting, jorja. Actually, there has been some research suggesting a genetic component to the disorder, as well as with other movement disorders.
Since it's a neuro-muscular problem, an exam by a neurologist or a neuro-ophthalmologist can either provide a diagnosis or rule it out.
I hope your daughter and niece don't have it, but if they should, at least it can be treated. Since most people who have blepharospasm struggle not to blink excessively or squeeze the eyes shut (which is an exhausting but futile fight), the medical Botox treatment comes as a big relief--almost like a medical miracle.
Also, the BRBEF support group website (which can be Googled) is very helpful to those who are newly diagnosed. Jaye
Great information--thanks for writing.
Thanks for reading the article. If you know someone who may possibly have blepharospasm, I hope you will encourage that person to see either a neurologist or an opthalmologist. The condition can't be cured (yet), but is treatable with medical Botox and some oral meds. Treatment makes the difference between non-functioning and functioning, so it's definitely worthwhile.
JAYE
Beautifully written article. I'm an editor of a
newsletter and I appreciate good writing. This should be submitted to other media. Exposure of our "ailment" is vital. While everything in your article is not common to others, the beginning, particularly, is.
Thank you so much, Marcia, for your feedback and your nice comment about my writing. I like your suggestion for submitting it to other media. The authors on Hubpages.com continue to own the rights to their work, so that's a great idea. Thanks!
By the way, if you have any suggestions about how the article can be improved to "fit" more people, I am open to them.
Jaye
Thank you for trying to get the information out to people who have no idea what blepharospasms are...and how people are affected and how it changes one's life.
I hope you try (if at all possible) to get a show like "Anderson Cooper's" - "The View" - "The Talk" - "Dr. Oz" - some show that has a lot of viewers that may take note of this. I live in Canada - There are quite a few talk shows on T.V. here too. Anything to get the word out.
Thanks for writing this article. Donna R.
Thank you so much, Donna, for your comments and encouragement. I will approach the shows you mention, as well as print media, in an attempt to publicize Benign Essential Blepharospasm. It's been a concern of mine for some time that cosmetic Botox gets so much media attention, while medical Botox, which helps so many of us function (and has been successful for decades prior to the wrinkle-zapper type)gets nil.
Again, thanks for your comments and suggestions.
Jaye
My experience is very similar to yours. I recently had eyelid surgery, but I still have spasms. I have been dealing with this condition since the late nineties, and I have yet to meet someone else with this condition. Most people just look puzzled when I describe what my spasms are like. It would be very helpfull if more attention were payed to BEB by the media. Thanks for your story.
Thanks for your comment, Emma. If you recently had the limited myectomy, at least you were probably the beneficiary of improvements made in the procedure since I had it. (I've read that surgeons now save fatty tissue taken from the area and pad it after muscles are removed for a more aesthetically pleasing look.)Sorry, though, that it didn't stop your spasms. The only positive aspect of the myectomy for me was that it did stop the violent squeezing of my eyelids, which was wearing me out. The downside, as I mentioned in my article, is that you must be vigilant about keeping your eyes adequately moisturized, particularly when you sleep, to avoid painful corneal abrasions. You can find lots of suggestions for this on the BEBRF Bulletin Board.
Oddly, I've noticed quite a few people who appear to be having spasms during the past 20-plus years I've dealt with the disorder. I'm not shy about approaching them to suggest they get checked by a neurologist, neuro-opthalmologist or movement disorder specialist because I recall--even after so many years--how frustrating it was not to know what was wrong with me.
These days, I've adapted to my treatments and routines. I no longer waste time agonizing over the condition as I once did, but it helps that I've retired from a stressful occupation. Good luck to you....
Not only does BEB need media attention, but the disorder needs federal research funding. If just one very visible celebrity would jump on the BEB bandwagon for us and a group of doctors and other experts through BEBRF could testify about the need for research in front of Congress (here in the USA), that would be a great start! I'm going to suggest this to the BEBRF, but if other BEB sufferers join me in doing so, it might speed the process.
Oops! I got on my soapbox, but as you can well imagine, this is an important topic for me (as well as for you). Again, thanks for your feedback. I've had more traffic to the article since I posted the link on the BEB Bulletin Board, and hope there will be some discussion on the Board about it, too.
Jaye
As a person with blepharospasm, I appreciate your accurate description of a "typical" patient, and what they have to go through. Thank you.
I am so glad my article "spoke" to you, and that you told me so. I've had blepharospasm for more than 20 years, and--although I didn't the write the article in first person--it describes my personal odyessey through this neuromuscular disorder.
Back when I was diagnosed, many general practitioners didn't even know about BEB. Certainly, I'd never heard of it prior to being labeled a "blepho", but was glad that a name was finally attached to the strange symptoms that were deeply affecting my life.
It is my hope that people new to the diagnosis (or even undiagnosed and wondering what in the world is wrong with them) will read this article and say, "Ah! So, other people go through what I'm going through and manage to function. Maybe I can learn to live with it too."
Thanks so much for your comment.
JAYE
I am suffering from blepharospasm for six years now and my times I would become extremely depressed.I have'nt come to term with my ailment as yet. I am only 47 years old .I am in the mids of living and providing for my family. I have to work,take care of my children and myself.I cannot afford the cost of the botox injections.That is one of my many problems.
It seems that you are coping very well.It a little comfort to read what you have to say.I have many questions .Continue writing
I understand your frustration and depression, Skeete, with regard to coming to terms with blepharospasm. I was in my 40s when my symptoms began, though it took a while to actually be diagnosed. And, yes, it is depressing to know you will have this disorder for the rest of your life unless research produces a cure. However, there's a lot of research going on, and treatment options that weren't available for me more than 20 years ago.
I remember asking the age-old questions, "Why me?", "Why now?", "How will I manage to function and go on with my career?" I daresay everyone diagnosed with blepharospam or any other dystonia disorder goes through the same thing. Finally, you must accept it and determine that you ARE going to survive--you ARE going to function--you ARE going to enjoy your life. This is where the support group on the BBB (online bulletin board) can be of so much help to you. I highly recommend that you read and post on the BBB often, especially when you're feeling down.
I was fortunate in that I had a strong support group with my boss, coworkers, friends and family. I had to make some adjustments to the way I did some things and also had to altogether give up some things I enjoyed. But my life has been good and continues to be, in spite of blepharospasm.
My condition was very resistant to Botox in the beginning, but that gradually improved. However, there have been times through the years when a set of injections didn't seem to work at all, or my condition seemed even worse for a while. Sometimes it was obvious that the amount of stress in my life was aggravating my symptoms. Although stress doesn't cause blepharospasm, it can make symptoms worse. It's very important to learn to control stress and keep it from controlling you. Since I've retired from a stressful occupation, I can tell the difference in my symptoms (which my doctor predicted).
When you're feeling depressed about your situation, it is helpful to go on the BBB and "talk it out" with others who are going through similar problems. They are willing to share tips about things that help them and to reassure you, which is often the "medicine" you need at the time.
You mention that you can't afford Botox, and I assume that means you don't have insurance (or don't have adequate insurance), so I suggest you contact Allergan (the maker of Botox) to find out if you qualify for their program to help people who can't afford the treatments. The BEBRF may serve as a liaison between you and Allergan.
If you reach the point where you can't work, the BEBRF and the people on the BBB will also be helpful to give advice about how to apply for disability benefits.
Don't give in to depression or give up believing that you can cope. We're all usually stronger than we think we are until "push comes to shove." Then we sometimes amaze ourselves.
I will be interested in learning if you get some assistance from Allergan so that you can get Botox treatments. The injections can make all the difference in the world.
God bless you.
Jaye
Skete....I went to the Allergan website to find out what they offer in patient assistance. For blepharospasm patients who qualify due to income level or because they are either uninsured or underinsured, there is a link to their assistance program. Once there, you can discover if you are eligible and, if so, apply for assistance with Botox. One of the links below didn't copy as a true link, so you will have to copy and paste it into your browser. However, I think they both end up on the same site, so try the blue link first. Good luck!
www.botoxpatientassistance.com
Thank you for sharing your experience. Based on your research, do you know whether your experience is a typical progression, meaning it develops into full spasms over a period of years. I have been diagnosed with secondary blepharospasm related to dry eye, but my neurologist could not rule out BEB. I have been trying to learn the typical progression of BEB. I would appreciate any information you may have. Thank you!
From my reading about BEB, I don't think there is a "typical" progression. Some people begin with full, intense spasms, as I did, and some develop them later. In fact, some people may go into a regression for a while, then have symptoms again. It's a disorder that has very individual consequences.
When I was first diagnosed, some of the literature about BEB and other dystonias mentioned the possibility of a type of progression that worried me because I was diagnosed with both BEB and Meige Syndrome (spasms around the mid-face). There was some concern that the dystonia might progress on down my face, but it did not. In fact, over the years my Meige symptoms decreased.
My BEB spasms were at their worst from the beginning, and were also resistant to Botox right at first. I needed the injections every three weeks for several years before increasing the time between treatment to six weeks. Things improved with continued Botox treatment so I was able to function and continue with my career until retirement.
You mention that you have dry eye syndrome. I had both dry eyes and sensitivity to light for several years before my spasms began, but my dry eye problem worsened after a limited myectomy.
It was a trade-off. I gained relief from the squeezing (which was very tiring), yet still had spasms (and needed Botox), but my eyes don't close tightly when I sleep. I frequently get painful corneal abrasions because air (especially forced air heat, a fan or A/C) dries my eyes to the painful stage even though I use night-time eye ointment and cover my eyes.
I recommend you contact the BEBRF, which has its own website.
The foundation maintains the latest information about BEB research and treatments. It has a library of printed material and videos that can be very helpful to someone newly diagnosed.
In addition to the BEBRF, the BEB bulletin board is a wonderful support group of people who have been coping with BEB for years or even decades, as I have, as well as "newbies" recently diagnosed or unsure if they have the disorder. I've found many helpful tips on the bulletin board, which is part of the BEBRF site. I still read and post there periodically. Here's the URL: http://www.blepharospasm.org/forums/beb/
Good luck, Kimberly, and I hope your condition will improve with treatment.
JAYE
Thanks Jaye for your response. I did not experience, or at least notice, any increased blinking before my first blepharospasm, so I was wondering whether that normally precedes full eyelid closures with those who have BEB. Like you, my eyelids also fail to fully close at night, which increases my dry eye problem, even though I use eye ointment at night.
Again, thank you so much for sharing your experience and for providing the informative links.
Kimberly
Hi, Kimberly....I had extreme fast blinking before the full eyelid closure (squeezing shut), and I've known other people with BEB who also experienced the increased blinking prior to full closure. However, I don't know if this is usual or not, so I still suggest you contact the BEBRF for official information. Good luck!
JAYE
Great article! I also have BEB, 11 years now. I see myself in your decription. I have not had the surgery however. Botox every 3 months, helps but is far from a cure! I am no longer working and was awarded SSDI in 2011. Treating the dry eye that goes with BEB aggressively helps more than anything I have found. Salmon oil, Borage, and flax supplements daily. A good nights sleep also gives me some good eye time for a few hours in the morning, sometimes not! Thanks for writing as we need all the AWARENESS we can get.
Hi, Denise...Thanks for reading and also for sharing your BEB experience. I'm glad you were able to get SSDI last year, since it was once extremely difficult to get it approved for BEB.
Unless you have severe squeezing, I would not recommend the limited myectomy because, otherwise, the side effects aren't acceptable tradeoffs. Not being able to close my eyes completely during sleep adds significantly to the dry eye issue and routinely causes painful corneal abrasions. However, the surgery has improved to some extent since mine was performed, as surgeons now replace fatty tissue after muscle removement to cushion the underbrow area. I wish they'd been doing that way back when....
If you are involved in a local support group, maybe you will share the link to my article with the other members and/or with the doctor who administers your Botox. I've tried to garner some interest from print magazines, but medical Botox use is not "sexy" like cosmetic Botox, so they aren't interested. I do want to spread awareness of BEB as much as possible. Sometimes word-of-mouth works pretty well.
Again, thanks for reading. I'm glad to share my BEB story, and your comments about the supplements you take may be helpful to others who read this article.
Take care....JAYE
THANKYOU you have told my story,and i beleive that this will help so so so many people, their are good people in the world and you my friend are one of them.
Thank you so much, Sylvia. You've made my day by letting me know that reading my own BEB story online was helpful to you. I've discovered that, although the experiences of those who have this disorder may differ, there are also many similarities. Sometimes it helps just to recognize that someone else is going through the same things that you must cope with every day.
I so appreciate your kind words. If you know anyone else--particularly someone recently diagnosed with BEB--who might benefit from reading this article, I hope you will pass along the link.
Take care....Jaye
Hi Jaye! Stay on your soapbox as your excellent writing is really telling of how some live with blepharospams! I too have had them for 10 years and have used the medical Botox. It is a miricle for me! Does not stop everything completly, but makes it managable! Dry eyes bothered by the slightes air movement. I sleep with a wet washcloth under a sleep mask. Ointements and prescriped drops. Managing stress helps a lot. When I focus on doing a task, I forget to blink, which makes things worse. I just had my injections yeterday and am waiting for them to kick in...it varies for me how long it lasts. I just call my Dr. when I need them.
THank you for getting the word out there. I would love to see attention brought to this on National TV!
Thanks, Becky....Your dry eye situation seems very like mine. I, too, sleep with a wet cloth over my eyes.
I'm glad that a lot of people have read this article. I've contacted several talk show hosts to try and get an expert (not me) to guest and talk about blepharospasm. No "yes" yet, but I won't give up.
Thanks for reading.
Thank you for your posting. I have very similar symptoms for a year now. I also have trouble walking and talking and have tremors in my right shoulder blade which can't be seen. Would appreciate any response.
Cheers :)
Corinna...Are you seeing a neurologist or movement disorder specialist for your symptoms? Have you received a diagnosis for the problems with your mobility, speech and tremors in your right shoulder? If not, I urge you to make an appointment right away (you may have to be referred by your primary care doctor).
There are many types of dsytonia, and you may have one or more types that are causing all of your physical problems. However, there may be some non-dystonia physical problem (neurological or otherwise) that is creating the other symptoms. It's crucial that you are being treated appropriately for all symptoms. Proper treatment may require more than one type of specialist.
I do hope you are able to get the help you need to give you respite from your tremors and allow you to function better. While medical Botox helps many people with BEB and other dystonias, there are also oral meds that are effective for some.
In addition to the BEB Foundation's online bulletin board (which is a very helpful online support group for BEB sufferers that can be found at http://www.blepharospasm.org/forums/ , there are also several websites that provide information about other types of dystonia. They include:
http://www.dystonia-foundation.org
http://www.atavic.org/index.html
http://spasmodicdysphonia.blogspot.com
That last one is a support group in Melbourne, Australia. I can't locate a dystonia foundation per se in Australia, but the Internet allows us to communicate worldwide, so, no matter where you live (and your "cheers" made me think that might be Australia), you can try any of the links.
Please let me know how you are progressing. I'm in your corner! Best wishes to you, Corinna....
Jaye
Hyphenbird Level 8 Commenter 13 months ago
Wow, what a terrible condition. I never heard of it before. The Hub is informative, well researched and laid out.
Thanks for this.