I was diagnosed with the dystonia blepharospasm more than two decades ago. This article describes my experience with the disorder.
Life With Blepharospasm
The time is more than a quarter-century ago, in the late '80s. I’ve become aware my blink reflex is overactive. Sometimes, my eye blinks so fast it’s difficult to see. This out-of-control blinking is uncomfortable, and when I confide in a friend, she says she monitors the state of my life by how fast my eyes blink. She thinks the excessive blinking is caused by tension. Since I'm dealing with a lot of problems, I agree.
A couple of years passed and the fast blinking continued, even though my life was relatively calm. What was going on?
What's more, my eyes seemed more than ordinarily sensitive to sunlight. I couldn't leave the house without sunglasses. My eyes clamped tightly shut whenever they were hit with a glare or bright interior light.
A few years later, the squeezing began. My eyes squeezed tightly shut intermittently, and I was still dealing with the fast blinking. My brain would tell my eyes to open, but the message apparently wasn't relayed to my eyelids. Walking down the hall at work, I bumped into a wall because my eyes were squeezed shut and refused to open. This was getting scary!
Driving on freeways became hazardous because I had to hold one eyelid open with my hand while I drove with the other hand. The eyelid I was holding open seemed to be fighting hard to close.
It had become difficult to read a book or watch a movie because focusing on the page or screen seemed to make the squeezing worse. I noticed that while I was looking at a person who was talking to me, my eyes went berserk, blinking and squeezing, but when I replied, my eyes stayed open. Once I stopped talking, though, the involuntary twitches started again. My occupation required me to talk to people all day. Might this affect my job?
I felt as if I was going crazy and made an appointment with my doctor. He was mystified by my symptoms and thought they could be caused by stress. He prescribed the benzodiazepam drug Xanax and referred me to a biofeedback lab that would help me learn to relax.
The Xanax, which was quick-acting, helped, but the biofeedback didn’t. At this point in time, I hadn’t learned of all the problems associated with the use of benzos, particularly Xanax, so I kept getting the prescription refilled. When I returned for my next appointment, my doctor told me he had been playing detective. He had discussed my symptoms with a neurology colleague, and the neurologist suggested the problem might be blepharospasm. This was a new diagnosis to my primary care physician, who had never heard of it before. In the late '80s and early '90s, most general practitioners thought blepharospasm to be a fairly rare disorder.
What Is Blepharospasm?
My doctor referred me to a neuro-ophthalmologist at a large hospital, where I was tested and diagnosed with bilateral essential benign blepharospasm.
"Bilateral" means it happens on both sides of the face. The word "essential" refers to the blepharospasm being of unknown origin (although some new research suggests there is a genetic component in about 10% of blepharospasm cases), and the word "benign" means it is not life-threatening.
The word blepharospasm means eyelid spasms, not to be confused with mild twitches. These spasms are strong and squeeze the eyelids tightly shut.
I got a secondary diagnosis of Meige syndrome, which is spasming in the mandibular area, because I began to have spasms around my nose and mouth. I hadn’t previously connected these to my eye-blinking-and-squeezing issues, but it turns out both of these conditions fall under the umbrella diagnosis of dystonia, also known as movement disorders.
While it was comforting to know I wasn't crazy, the news that I had two incurable movement disorders saddened me. These conditions were treatable, though. The usual treatment for blepharospasm and Meige syndrome was to undergo regular injections of botulinum, targeting the muscles that produced the spasms.
Treatment via Injection
The recommended treatment for these disorders was therapeutic botox. The botox solution was injected in minute quantities into the muscles that spasmed, causing their temporary paralysis. The procedure was safe and had been successfully used for this purpose for more than 10 years.
The botox specialist agreed that taking oral medications could be helpful, so I continued taking Xanax, which I would later regret. (Research shows that benzos can actually cause irreversible blepharospasm and other dystonias.)
My first series of botox injections was disappointing. I received more than 20 injections into the corners of my eyes, upper eyelids, the areas beneath my eyes, above my brows, cheeks, and the sides of my nose. These were quite painful. I required a full vial of botox, but I was motivated to stop the spasms, so I didn't complain. The doctor who administered the shots was very kind.
He told me the injections could take up to a week to take effect, but I expected faster results anyway. That week seemed like one of the longest in my life, and I had almost given up hope when I woke one morning with eyes that were difficult to close! I had to use lubricating eye drops because not blinking caused painful, dry eyes. This seemed like a fair tradeoff. I kept looking into the mirror at eyes that stayed wide open. I was extremely happy with something most people took for granted.
Unfortunately, the results wore off much too soon. I was told they should have lasted for two to three months, but after three weeks, I was back to square one. Thus, for the next year of my life, I required injections every three weeks to stay functional. I read about people with untreated blepharospasm becoming suicidal and decided that allowing my face to be a pincushion for botox needles every three weeks wasn't so bad.
The specialist in charge of my treatment told me about a surgery called a limited myectomy, in which nearly all of the muscles around the eyes are removed, leaving only a thin strip to allow the eyes to close. Since my blepharospasm seemed to be somewhat resistant to Botox, this surgery could help, the specialist said. While it wasn't guaranteed I would get enough relief from the surgery to stop receiving injections, the squeezing would stop.
Treatment via Surgery
I decided to have the surgery. I took one last look at my pre-surgery eyes—eyes which had always been my best feature. I was told their configuration would change with the myectomy. The areas where muscle and fatty tissue now softened my eyes would look like skin stretched tightly over the bone. I had seen post-surgical photos of other myectomy patients, so I knew what to expect. Alas, vanity had to be sacrificed.
The surgery stopped the tight squeezing, but the spasms continued. Botox injections were resumed six weeks later. They would, unless research found a cure, be a part of my life from now on. The surgery also caused frequent pain from extremely dry eyes, and, because of this, corneal abrasions. These occurred because my eyes no longer closed tightly while I slept. Air, particularly from central heat, air conditioning, and fans, abraded my eyes and caused intense pain. I learned very quickly to coat my eyeballs every night with an ophthalmologic ointment I purchased online, and to hold my eyes shut with a folded and dampened bath towel. This became my routine, replacing a nightly beauty regimen, but preventing blistered eyes in the morning.
I joined the Benign Essential Blepharospasm Research Foundation (BEBRF) and learned all I could about blepharospasm in the online support group. I also tried to help and comfort people who had been recently diagnosed. I remember all too well the confusion and sorrow I felt and wanted to lend a helping hand.
Blepharospasm in Popular Culture
A few years ago, I—like others suffering from blepharospasm and additional movement disorders that require medical botox treatment—became indignant about all the media attention devoted to the cosmetic use of botulinum to prevent or reduce wrinkles. Why doesn’t medical Botox get equal attention? That’s easy to answer. Cosmetic Botox is sexy, and medical botox is not. The BEBRF once tried to interest Oprah Winfrey in devoting one of her shows to BEB, but it didn't happen. I pitched an article about the differences between therapeutic and esthetic uses of Botox to numerous print publications and tried to get Oprah, Anderson Cooper, The View, and other talk shows interested--to no avail.
I recently watched an old movie starring Sally Fields and Michael Caine, in which Fields’ character blinks excessively. Another character in the film says she has “blepharospasm and her eyes blink a lot every time she tells a lie!" This patent untruth infuriated me! It’s bad enough that every book or article about body language insists that a person who won’t make eye contact is not to be trusted without propaganda affecting BEB sufferers. I learned that avoiding eye contact is the blepharospasm sufferer’s best way to prevent severe eye spasms when listening to another person talk, but how do I make others realize this has nothing to do with my trustworthiness?
I can only hope more education about movement disorders (of which Parkinson’s Disease is a cousin) and benign essential blepharospasm, in particular, will correct the misinformation.
I felt fortunate that medical Botox continued to work for me, and the pain of injections had been greatly diminished by preparing the treatment area with lidocaine. When I moved, a different doctor changed my Xanax prescription to clonazepam (brand name Klonapin®), a longer-lasting oral medication with anti-spasmodic effect. Unfortunately, I didn't realize (and was not told) that it is also a benzodiazepam.
I had adjusted to life with BEB, realizing it was unlikely a cure would be discovered in my lifetime and accepting that near certainty. Perhaps it will happen for later generations of people diagnosed with blepharospasm. I fervently hope so.
In my own situation, I planned to be slowly weaned off clonazepam over a period of weeks and make do with medical botox alone. That was when--just my luck--medical 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 clonazepam 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.
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.
Online Support Group for Blepharospasm
If you are experiencing blepharospasm and would like to talk to others like you, check out this online support group.
Update: I want to thank the BEBRF Newsletter for featuring a copy of this article in their September/October 2012 issue (Volume 31, Number 5). I was very pleased to give BEBRF permission to reprint my story in the hopes it will prove helpful to others who are living with Blepharospasm.
BEBRF is a wonderful organization that exists to fund valuable research, support Blepharospasm patients and their families, and educate the public about this condition. Thanks, BEBRF, for all you do!
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: 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.
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.
© 2011 Jaye Denman
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.
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.
Peggy Woods from Houston, Texas on July 10, 2013:
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.
Jaye Denman (author) from Deep South, USA on March 07, 2013:
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 on March 07, 2013:
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.
Jaye Denman (author) from Deep South, USA on February 03, 2013:
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.
Michelle Liew from Singapore on February 03, 2013:
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.
Jaye Denman (author) from Deep South, USA on January 24, 2013:
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 on January 24, 2013:
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!
Jaye Denman (author) from Deep South, USA on November 24, 2012:
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 on November 24, 2012:
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.
Jaye Denman (author) from Deep South, USA on November 08, 2012:
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 on November 07, 2012:
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.
Jaye Denman (author) from Deep South, USA on July 27, 2012:
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.
Jaye Denman (author) from Deep South, USA on July 27, 2012:
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 on July 27, 2012:
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.
Jaye Denman (author) from Deep South, USA on June 11, 2012:
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!
Jallen313 on June 11, 2012:
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.
Jaye Denman (author) from Deep South, USA on May 24, 2012:
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:
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 on May 24, 2012:
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.
Jaye Denman (author) from Deep South, USA on May 15, 2012:
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 on May 15, 2012:
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 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!
Jaye Denman (author) from Deep South, USA on May 02, 2012:
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.
SYLVIA BANFIELD on May 02, 2012:
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.
Jaye Denman (author) from Deep South, USA on April 22, 2012:
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.
Denise on April 22, 2012:
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.
Jaye Denman (author) from Deep South, USA on March 12, 2012:
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 on March 12, 2012:
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.
Jaye Denman (author) from Deep South, USA on March 05, 2012:
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.
Kimberly on March 05, 2012:
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!
Jaye Denman (author) from Deep South, USA on January 14, 2012:
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!
Jaye Denman (author) from Deep South, USA on January 14, 2012:
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 on January 14, 2012:
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
Jaye Denman (author) from Deep South, USA on December 14, 2011:
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 on December 13, 2011:
As a person with blepharospasm, I appreciate your accurate description of a "typical" patient, and what they have to go through. Thank you.
Jaye Denman (author) from Deep South, USA on December 08, 2011:
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 on December 08, 2011:
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.
Jaye Denman (author) from Deep South, USA on December 06, 2011:
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. on December 06, 2011:
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.
Jaye Denman (author) from Deep South, USA on December 06, 2011:
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.
Marcia on December 06, 2011:
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.
Jaye Denman (author) from Deep South, USA on May 22, 2011:
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.
Beverly Stevens from College Station on May 22, 2011:
Great information--thanks for writing.
Jaye Denman (author) from Deep South, USA on April 15, 2011:
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
jorja kick from southeast georgia on April 15, 2011:
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
Jaye Denman (author) from Deep South, USA on April 05, 2011:
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
Brenda Barnes from America-Broken But Still Beautiful on April 05, 2011:
Wow, what a terrible condition. I never heard of it before. The Hub is informative, well researched and laid out.
Thanks for this.