Excessive Eye Blinking and Squeezing May Be a Movement Disorder Called Blepharospasm

When blepharospasm squeezes eyelids shut, even a healthy eye can't see.
When blepharospasm squeezes eyelids shut, even a healthy eye can't see. | Source

What Is Blepharospasm?

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. (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.

Therapeutic Botox® for blepharospasm requires injections very near the eye.
Therapeutic Botox® for blepharospasm requires injections very near the eye. | Source

Therapeutic Botox

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.

The normal eye before limited myectomy surgery when eyelid muscles are removed and eyelid configuration changed.
The normal eye before limited myectomy surgery when eyelid muscles are removed and eyelid configuration changed. | Source


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 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.

A person with BEB can't keep the eyes from squeezing without therapeutic Botox®.
A person with BEB can't keep the eyes from squeezing without therapeutic Botox®. | Source

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!

© 2011 Jaye Denman

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Comments 52 comments

JayeWisdom profile image

JayeWisdom 20 months ago from Deep South, USA Author

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 20 months ago

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

JayeWisdom profile image

JayeWisdom 2 years ago from Deep South, USA Author

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 2 years ago

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

JayeWisdom profile image

JayeWisdom 2 years ago from Deep South, USA Author

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.


Shyron E Shenko profile image

Shyron E Shenko 2 years ago

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

JayeWisdom profile image

JayeWisdom 3 years ago from Deep South, USA Author

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.



Peggy W profile image

Peggy W 3 years ago from Houston, Texas

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.

JayeWisdom profile image

JayeWisdom 3 years ago from Deep South, USA Author

ABehera....I'm sorry your blepharospasm hasn't yet responded well to Botox, but the key word there is "yet." I hope you won't give up on it, but will work with your doctor to adjust either or both dosage and time limit between injections.

More than 20 years ago, when I was diagnosed and first began Botox injections, my disorder was highly resistant to the injections for several months and slow to work. This was frustrating for me, as I know it is for you. However, the doctor who treated me then increased the amount of medical Botox used, the number of injection sites (and where they were placed as well), plus gave them to me more frequently. This made all the difference and allowed me to function in a very demanding job for more than another decade.

Also, some of the most severe cases may require surgery, such as a limited myectomy (a procedure that has been refined and improved since I had it in the early 90s). There are trade-offs (extreme dry eye is one), but it will keep your eyes from squeezing tightly shut, a situation that is very tiring and depressing. Please talk to your doctor about options and, if necessary, make an appointment with a movement disorder specialist who knows the latest treatments.

Good luck! I'm wishing the best for you....Jaye

ABehera 3 years ago

Very useful information.I have been having this problem for last 2 years an am under treatment. The Botox has really not worked well in my case.

JayeWisdom profile image

JayeWisdom 3 years ago from Deep South, USA Author

Hi, midget....Actually, it's more than an eyelid "twitch", which could be simply a nervous tic. Blepharospasm causes (in the early stages) very fast blinking for most people, followed by a forceful squeezing of the eyes tightly shut. The sufferer is powerless to stop the squeezing without treatment, and the condition can render him or her functionally blind if it gets severe.

Fortunately, more doctors these days are familiar with the condition, and many neurologists and ophthalmologists are trained to give the medical botox injections that temporarily paralyze the out-of-control muscles around the eye that spasm. There are other treatments that supplement botox, but it's the treatment of choice and has worked well for about 30 years. I've been getting the injections for more than 20. I could not have functioned without them.

If you notice someone blinking rapidly with some intermittent eye squeezing, that person could likely have blepharospasm.

Thanks for reading, your comment and for sharing this hub.


midget38 profile image

midget38 3 years ago from Singapore

So, the twitch of the eyelid might be a symptom of this. Thanks for sharing! I will make others aware of this disorder by sharing this hub.

JayeWisdom profile image

JayeWisdom 3 years ago from Deep South, USA Author

Alycat742 -- Thanks for your comments. You didn't say how long since your original diagnosis of blepharospasm. If it's fairly recent, you may be adjusting to the medical Botox. All people don't react the same, and, for some, it takes longer for the injections to work as well as they can. I hope you will get better results soon.

I've learned, after having the disorder for more than 20 years, retiring from a stressful occupation lessened my spasms and lets me to longer between injections without bad symptoms. If there's a lot of stress in your life--whether from your work on other factors--please do whatever you can to lessen it. Less stress can make a positive difference for blepharospasm patients. Good luck!


Alycat742 3 years ago

Thanks for sharing your story! I too suffer with blepharospasm and now have been diagnosed with Meige's, so my spasms are in eyes, mouth, and even my neck. I agree that Botox wears off within 3-4 weeks and that's if the injections are done in the right muscles to begin with. And the wait of 3 months for the next round of shots seems endless. Thanks again for sharing!

JayeWisdom profile image

JayeWisdom 3 years ago from Deep South, USA Author

Bananasplit....I hope your dad won't give up on the Botox because it didn't work well the first time. My own experience when I first began taking the injections wasn't optimal. I was very resistant to the Botox. Eventually, it began working better. Also, the surgery I had made my eyes stop squeezing (so I didn't have to push my eyes open with my hands).

You mentioned the cataract surgery as a possible causal factor, and I don't know the answer to that question. The year before my symptoms got bad, I'd had radial keratotomy and thought it might have precipitated my own blepharospasm, but the doctor told me it didn't. It was just a coincidence.

It's good of you to check on the Internet for information about this disorder for your dad. I hope you'll check out the BEBRF bulletin board (forum) for him, too. Good luck!


Bananasplit 3 years ago

Thanks so much for your response Jaye. It means a lot... especially when there doesn't seem to be many answers right now. My father had 1 botox treatment about 3 months ago but it didn't provide any relief from the symptoms. My father's condition has gotten progressively worse recently and he cannot keep his eyes open at all without using his fingers to pry one open. Sometimes I notice that he can open his eyes when he talks about something serious for a few seconds.

One thing I wanted to mention was that he had cataract surgery a few years ago - I'm wondering if this could be a complication related to the surgery.

In the meantime, I am just continuously plowing through the internet in hopes of finding some more tips for my father. It is so painful to watch him struggle through the day with his condition, and you are so right, it so difficult not to ask the question "Why my father?"

I hope one day there will be a breakthrough in treatment for all dystonias.

Thanks for the well wishes.

JayeWisdom profile image

JayeWisdom 3 years ago from Deep South, USA Author

Bananasplit....The support your father will receive from you and other members of your family is very important for his ability to adjust to this disorder and thrive in spite of it. While bright sunlight, glare or even strong indoor lighting can worsen the spasms, there are special sunglasses with lens that filter out the light. (He can even wear two pair of dark glasses at once, the larger covering the smaller.)

You didn't mention what treatment your dad is getting since his diagnosis. If he's started getting the medical Botox shots, he should know that the first few times he gets injections, they might not take effect for several days up to a week, but they should begin helping him soon.

Encourage him to communicate with other people who have blepharospasm by signing on to the BEBRF bulletin board/forum. It's a great way to get support and learn helpful tips. Also, many areas have support groups that have meetings. If there is such a group in your area, I recommend that he join it. It is normal to feel, "Why me?" when first diagnosed, but treatment can help your dad function well even with blepharospasm.

Thanks for reading my story, and give my best wishes to your father.


Bananasplit 3 years ago

My father has recently been diagnosed with blephorospasm and it has been very difficult for him to deal with. Tennis and exercise were his life but now he can't even go outside for a walk. Watching him struggle with just the daily activities is very tough on the family and sometimes he can't do anything but lie in bed and listen to the radio all day.

Your article and all the comments have provided some good insight into the condition so thank you. Are there any activities/hobbies you could suggest for my father to pick up? I'm not sure how I can help/support him in the tough years ahead.

As with all medical conditions, we can only hope that there will be advances in research I guess.

JayeWisdom profile image

JayeWisdom 4 years ago from Deep South, USA Author

Sharon....I just re-read your comments and noticed that you're using a quantity of daytime drops that far exceeds what I use. I only use one bottle per week, and sometimes it lasts a bit longer. I've been using a gel drop made by GenTeal, and it seems to last longer before I need to add more (than Refresh or other brands I've tried). If you can find it where you live, you might want to give it a try.

Take care,


JayeWisdom profile image

JayeWisdom 4 years ago from Deep South, USA Author

Hi, Sharon....I've got goosebumps because reading your comments is like reading MY story! I, too, had to retire early (6 years before my expected retirement)--not because of my eyes, but because an accident left me with limited mobility and chronic pain. In short, I couldn't keep up the pace of my very demanding job. While I was on disability insurance benefits, my income was reduced by 1/3.

However, when I became retirement age three years ago, it dropped much, much further. (I have a pension plan from my employer of 22 years, but found out when I applied for it that my former employer "legally" (but not ethically) halved my pension benefit. (The "how" is a long story, and I won't bore you.) But you see...I know where you're coming from, as my grandchildren like to say.

Those little tubes of Refresh and Lacrilube are extremely expensive, but having spent days in the dark in excruciating pain from corneal abrasions when I didn't use enough of the ointment, I don't stint on it any more.

My former ophthalmologist did a minor surgical procedure that re-routed tears into both eyes, but it didn't work very well. Instead of coating the eyes with tears as is normal, they would gush into the corner of my eyes and stream out without coating the entire eye. I spent much time blinking--not from blepharospasm, but trying to get the tears to coat my eyes. Finally, my doctor reversed the procedure in one eye, but (because my septum was deviated) a very simple procedure turned into a complicated one. For that reason, only one eye was reversed. However, the amount of tears in the other eye decreased with time, so it rarely "leaks" any more.

I wish I had something more positive to offer you. I don't know of any ointment or drops for dry eyes that require prescriptions, though I haven't asked my own doctor lately. Perhaps I should do so. If I learn of anything I'll note it on this post.

Here's something that may make you chuckle (and I find that laughing helps me feel better about everything!)....My little dog now has dry eye syndrome, which is apparently not unusual in small to medium sized dogs. That means I'm buying TWO tubes of Refresh ointment at a time instead of one! One tube for me, one for my dog!

By the way, you didn't mention whether or not you check the BEBRF bulletin board or not, but you may have found the link to this story there. I was recently asked by the BEBRF newsletter editor if my story can be used in an upcoming issue. Of course, I said "Yes", because I'm always eager to reach as many people as possible about blepharospasm and what it's like to live with it for two decades or longer.

Good luck, Sharon, and remember to laugh a lot. It helps!


Sharon 4 years ago

Thanks for your post here Jaye. If I wasn't sure I had not written this, I would have thought it was my story.

You see, my blepharospasm began in the same way 11 years ago. They progressed to the point that my eyes squeezed shut at times when I really needed them to be open such as walking in unfamiliar areas and amongst people. I would walk into them by accident. ...or I would be walking up or downstairs and I would fall. Sometimes just a little ways, but others a full flight. This became extremely serious after awhile because I lived in a 3-storey walk up. I had to move to either an apartment with an elevator or a townhouse condo or something similar.

Finally in 2006 I went for my surgery (limited myectomy). I was so glad that the squeezing, accidents, and squinting would all be under control.

However, now 6 years after the surgery I have been retired due to inability to continue my position of employment. I am looking at a severely reduced income and in 11 years I will be reduced even further because I will be on Canada Pension and Old Age Security. My eyes do not tear very much. I can cry with tears falling out of one eye. Sometimes the other will tear but very seldom. Still, they are extremely dry. So at night I use lacrilube and during the daytime, I use refresh eye drops.

I use 2 tubes of lacrilube per week at the cost of $25.00 x 52 totalling $1300. For my eye drops I use refresh liquigel which is $18. I use 3 - 4 bottles of these per week. Each package contains 2 bottles for $15. So at $36 x 52 this totals $1872. Add these two together it costs me $3172 roughly per year. Now I am really concerned about my limited income. For a senior, $3000 plus is a lot of money to have to spend.

I am wondering if you know of a prescription drug or drugs that could replace the eye drops and lacrilube since I do have a really good medical plan. Or maybe you know of a possible surgery that could correct this eye closure bit.



JayeWisdom profile image

JayeWisdom 4 years ago from Deep South, USA Author

Hi, Jallen. I'm glad you found encouragement in my story. All of us with BEB have challenges, but I am so grateful there is treatment that reduces them. When I was first diagnosed, I was so worried that I might not be able to function. Every day I wake up and can keep my eyes open is a wonderful day for me...even when it's storming!

Best wishes,


Jallen313 4 years ago

Having shared your condition for about 5 years I found great comfort and encouragement reading about you 'journey'. Thank you so much, and I look forward to more publicity and research on this condition. Thank you again and to fellow travelers on this path, may we remain strong and hopeful and thankful.

JayeWisdom profile image

JayeWisdom 4 years ago from Deep South, USA Author

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 , there are also several websites that provide information about other types of dystonia. They include:

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....


Corinna 4 years ago

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 :)

JayeWisdom profile image

JayeWisdom 4 years ago from Deep South, USA Author

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.

Becky McCreery 4 years ago

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 completely, but makes it manageable! 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 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!

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JayeWisdom 4 years ago from Deep South, USA Author

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


THANKYOU you have told my story,and i beleive that this will help so so so many people, there are good people in the world and you my friend are one of them.

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JayeWisdom 4 years ago from Deep South, USA Author

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

Denise 4 years ago

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.

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JayeWisdom 4 years ago from Deep South, USA Author

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!


Kimberly 4 years ago

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.


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JayeWisdom 4 years ago from Deep South, USA Author

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:

Good luck, Kimberly, and I hope your condition will improve with treatment.


Kimberly 4 years ago

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!

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JayeWisdom 4 years ago from Deep South, USA Author

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!

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JayeWisdom 4 years ago from Deep South, USA Author

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.


Skeete 4 years ago

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

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JayeWisdom 4 years ago from Deep South, USA Author

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.


lastradioman 4 years ago

As a person with blepharospasm, I appreciate your accurate description of a "typical" patient, and what they have to go through. Thank you.

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JayeWisdom 4 years ago from Deep South, USA Author

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.


Emma 4 years ago

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 helpful if more attention were paid to BEB by the media. Thanks for your story.

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JayeWisdom 4 years ago from Deep South, USA Author

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.


Donna R. 4 years ago

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.

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JayeWisdom 4 years ago from Deep South, USA Author

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 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.


Marcia 4 years ago

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.

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JayeWisdom 5 years ago from Deep South, USA Author

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 ophthalmologist. 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.


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Beverly Stevens 5 years ago from College Station

Great information--thanks for writing.

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JayeWisdom 5 years ago from Deep South, USA Author

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

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jorja kick 5 years ago from southeast georgia

Goodness!!! what a great informative well written piece..

not to mention I think My neice may have this and my middle this an inherited trait?

thanks for sharing


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JayeWisdom 5 years ago from Deep South, USA Author

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

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Hyphenbird 5 years ago from America-Broken But Still Beautiful

Wow, what a terrible condition. I never heard of it before. The Hub is informative, well researched and laid out.

Thanks for this.

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