My Recovery from Blepharospasm and Meige Syndrome

Introduction

My name is Doug Patt. I was diagnosed with Benign Essential Blepharospasm (BEB) with Oromandibular Dystonia, also called Meige Syndrome. I am currently recovering from the condition. This is my story. I wrote this down for my children, relatives and anyone else who might be helped by my experience. No one can precisely say what causes Blepharospasm. In my case it’s likely genetic. My father, his twin brother and their mother all had / have dystonia. My father has Meige syndrome, his twin brother has blepharospasm and their mother had spasmodic dysphonia.

I knew what I had before I was diagnosed. Thankfully, in the beginning, the condition is situational. Symptoms can be can be managed and hidden, but eventually this was not the case for me. I knew where I was headed and I was desperate for an alternative solution to drugs or surgery. I found Dr. Joaquin Farias name mentioned in the footnotes of the Wikipedia page on blepharospasm in June of 2017. I discovered that he treats dystonia patients, of all types, with neuroplasticity. I read both of his books and watched his TED talk on YouTube. The doctor has become well known for his treatment of Dystonia as a neuroplastic brain disorder, or one that can be overcome with neuropathway changes to the brain.

In 2017 I attended one of Dr. Farias workshops for BEB in Toronto. It did three things for me. I understood my condition better. I left with strategies to deal with symptoms. And I had hope of recovery. A striking thing about my visit was the wide variety of symptoms the seven other people had. Some winced while others just blinked a lot. There were also strange facial contortions, tics and closed eyes, all symptoms of BEB and Meige. While I offer this diary as a guide and ray of hope, we're all different. It's for this reason that I recommend diagnosis, strategy and guidance from an expert, Dr. Joaqin Farias.

Preface

The best way I can describe my experience with BEB and Meige is this. I had an uncomfortable sensation that I could not pinpoint. It had something to do with my eyes or rather, something behind my eyes. It soon caused me to blink more than I was used to. The blinking eventually turned into squinting, wincing, eye closure and spasms. It was also accompanied by dry eye. As time went by it seemed as though my brain decided to recruit my mouth, jaw, neck and throat to do something about what was going on around my eyes. This produced new and strange movements which included an increasingly wide open mouth, a tremulous jaw, halted breathing, choking noises, a horse voice, tight facial muscles, squeezing eyes and facial pain. BEB had turned into Meige. Whether or not that's what medically happened, I'll likely never know. For simplicity I refer to my condition henceforth as BEB. 

Recovery

I believe I'm getting better for two clear reasons and a third that's less quantifiable. The two easily identified reasons are: (1) The ideas and practical methods of Dr. Joaquin Farias; (2) A minute by minute, day in and day out, unrelenting effort to reverse my symptoms. Based on what Dr. Farias taught me I set out to teach my brain that my dystonic symptoms needed to go. For example when tension builds in my face, I relax. When my eyes close I get them open. If my eyes don't want to stay open, I use the muscles around my eyes to keep them open. I breathe through my nose rather than my mouth to keep Meige at bay. When my condition was most pronounced my breath was shallow, halting and noisy. I learned to breathe quietly and calmly. I've been doing all of these things, and much more, for the last three years and hundreds (if not thousands) of times a day, every day. I also worked to desensitize myself to the things that brought out my symptoms. I did things on purpose that make my eyes close. But I never accepted the 'eyes closed' outcome. I read. I read out loud. I walk. I ride my bike. I go to the grocery store. I engage my family in conversation. To most people these are simple activities, but for a BEB patient, they can be excruciating. Progress was slow but I always felt like if I kept my eyes open for another second, relaxed my face one more time, breathed deeply, refused to be fearful, or said a few words more without my eyes clamping shut, that it would all eventually add up. It was consistently one step forward, two steps back and lots of disappointing days and weeks. There were pride dismantling events and lots of tears. But it's worked. I still have triggers and my eyes close on occasion but not like before. My symptoms are slowly disappearing.

The third and more ephemeral reason I believe I'm in recovery is prayer. I've prayed continuously through this ordeal as have many friends and family members. I don't know why some people get well and others don't. What I do know is that this disorder and my experience has changed me for the better in ways that are permanent and hard to describe. 

Diary

October 27, 2014

Work is more stressful than ever. I have insomnia. My wife and I were away this past weekend. I woke early in the morning. When I tried to go back to sleep I couldn't. I had a tremor in my eyelids that made it difficult to keep them closed. I eventually fell asleep but it took some time.

Remarks: I eventually bought a sleep mask. This helped me relax and hold my eyelids closed. Unfortunately the mask eventually caused styes on my eyelids. I had to give it up. I've since learned to alleviate the eyelid tremor, which still comes and goes, through relaxation techniques. The most effective has been to breathe in slowly through my nose and imagine the air forms a calming vortex behind my eyes. I then breathe out slowly and relax my forehead, lower eyelids, cheeks, and jaw.

January 13, 2015

I saw a doctor today to talk about depression, insomnia and my eyelid tremor. He did not know what was causing the tremor but did recommend an antidepressant and sleep medication.

Remarks: I've tried various antidepressants but eventually gave them up. While they worked for me, I have Benign Essential Tremor, which gets more pronounced on these medications. I also took sleep medication for some time but it seemed to magnify my BEB symptoms with frequent use. I also found over the years that some medications, even over the counter, can make my BEB worse. In contrast I have also read about people who report their depression medication helped alleviate BEB symptoms.

February 9, 2017

I tried to watch a video on my phone this morning. My eyes hurt and watered. It was a strange sensation. I called my father to ask him about his dry eye condition. He explained that watery eyes were a symptom of dry eye. It was reassuring but I also knew that it was his first symptom of BEB.

March 8, 2017

During a project meeting today I began to blink uncontrollably. It was completely involuntary and a little scary. I had hoped that my eyelid tremor, watery eyes and pain were symptoms of dry eye. I’m not so sure anymore.

May 24, 2017

I commute two hours (each way) once a week to project meetings out of state. The drive has become increasingly uncomfortable from frequent blinking episodes. My eyes also feel like they want to be closed. Keeping them open for hours at a time is tiring. I’m exhausted when I arrive home in the late afternoon.

Tip: Doing things I enjoy provided some relief from spasms. I love to draw. I also love to drive. I told my mother when I was a little boy that I wanted to be a truck driver when I grew up. It hasn’t always been easy, but I’ve been able to continue driving throughout my BEB ordeal. I wonder if it has something with enjoying the activity?

June 3, 2017

I've begun to research BEB. I found Dr. Joaquin Farias name mentioned in the footnotes of the Wikipedia page about blepharospasm. I also watched a couple videos on YouTube of his patients recovering from dystonia. Very encouraging. I thought the condition was incurable?

Remarks: I visited Dr. Farias website and contacted him. I attended one of his workshops in September 2017. It turned out to be a game changer.

June 4, 2017

I contacted one of the people from the YouTube videos I watched about Dr. Farias and BEB recovery. She recommended, among other things, that I join the Neuroplasticity Therapy for Blepharospasm Facebook Group. I did.

Remarks: The site is informative and the members are caring and helpful. It features inspiring stories, questions and answers, events, support and a wealth of information about BEB and Meige based on Neuroplasticity and Dr. Farias work.

June 7, 2017

I've ordered two books, The Open Focus Brain and The Brain That Changes Itself.

Remarks: The Open Focus Brain features ways to pay attention to the world around us. It features a technique valuable for BEB patients called Open Focus. In simplified terms Open Focus is about learning to see by blurring central vision and maintaining awareness of the periphery. In this way we become less narrowly focused and more broadly aware. I’ve found the technique good for alleviating blinking and spasms.

The Brain That Changes Itself features stories about people who used neuroplasticity to change the brain’s neuropathways, thereby fixing seemingly unfixable physical problems. There are stories of people conquering excruciating pain, being healed from brain disorders, stroke recovery and even a woman who overcomes being born with half a brain. After I read the book I was convinced that I could make myself well.

June 13, 2017

If I had any doubts I had BEB they've vanished. We're at the beach this week. I squint and blink constantly. It's almost impossible to read because of the sun's reflection on my book.

Remarks: My father had intense light sensitivity. He didn’t leave the house without sunglasses, wore them inside on occasion and had us turn the lights down inside all the time. For that reason I decided that I was going to fight the urge to put on a hat and sunglasses and, rather, desensitize myself to sunlight. I refused to wear sunglasses (for the most part) for a couple years thereafter. I also bought a light therapy lamp ("happy light") and set it next to my computer. It made me feel less depressed and probably helped me with BEB related photophobia.

June 14, 2017

I rode my bike around town today. I experienced frequent blinking and involuntary eye closure. I was able to get my eyes open quickly but it was disconcerting. I also noticed that If I turned my head quickly or got distracted my eyes closed periodically.

Remarks: Bike rides can be difficult. I think I've tried every trick in the book to make it easier. My best advice is to relax and just ride. That is, don’t think too much and remain unattached, less judgmental or dispassionate if you can. Research has tied BEB to the Basal Ganglia (1). The amygdala, which is responsible for the process of emotions, which trigger the ”fight or flight" reflex, is part of this area of the brain. It’s my experience with BEB that I feel like I’m on high alert all the time. It doesn’t take much to make my eyes close. Anger, fear or anxiety are the worst. It makes sense that with less judgment comes less emotion and fewer blinking and spasms. Whether it’s a bike ride or a presentation.

June 19, 2017

I took some video of myself as I drove. I blink a lot more than I used to. I also notice that my eyes stay closed a little longer than they used to. Sometimes my eyes feel like they want to close and stay closed.

Remarks: I’ve noticed over the years with BEB that the more my eyes are open the more they stay open. This is true day to day and year by year. If I have a day with lots of stress and triggers, blinking and eye closure are magnified. If I have a day with relaxation and few triggers my eyes seem better and I’m less tired. There are also days, unfortunately, where nothing makes sense.

June 20, 2017

Reading is difficult. Reading in bed at night has become next to impossible. My eyes water and blink constantly.

Remarks: This did not change quickly. I tried a kindle and larger fonts, neither helped. My Dad suggested reading while laying on my back, which works for him. It didn’t work. I used a screen reader (computer reads out loud) but that defeats the possibility of neuroplastic change. Closing one eye helps a little. I also made paper covers with small holes for my glasses and tried a special adhesive material with perforations placed on my lenses (stenopeic or pinhole glasses). In the same vein I purchased welders glasses and dystopian goggles. All provided a little relief. Limiting my field of vision seemed advantageous. Lastly, I purchased reading glasses with blue blocking red lenses. These also helped but didn’t solve the problem. What worked long term was desensitizing myself to reading. So I read, read out loud and walked around the house with my phone or book and read. It was excruciating. It took a few minutes sometimes just to read one sentence. But it wasn’t about comprehension. It was about wellness. So with watery eyes, closure and spasms I never gave up. It was one word and spasm. The same word and spasm. Then maybe two and spasm. Eventually maybe a sentence if it was short and spasm. A few years later I can read, read out loud and read consistently without too much trouble.

June 25, 2017

I drank too much beer last night. My eyes were awful today.

Remarks: My eyes get worse when I drink. Ironically, there is a point, if I've had enough to drink, that my eyes actually get better, but it's brief. No matter what I always pay for overindulging.

July 25, 2017

I've been doing brain games. The Brain That Changes Itself recommends doing hard brain work or “paying close attention” in order to create the optimal conditions for brain plasticity. Incidentally, the book also mentions that reading is important to create optimal plasticity conditions.

Remarks: Consistent "Brain training" has been a challenge. Not because it’s difficult but because I just haven’t been consistent. I did not continue regularly beyond the first year. I do still have the app and use it on occasion. Whether or not it gave me a "leg up" I'll never know.

July 26, 2017

Today I met with my client and contractor on site. These weekly meeting are a challenge. My blinking is getting worse. My breathing also gets noisy when I try to control blinking and spasms. It's embarrassing. I may have to tell everyone what's going on.

Remarks: I'm typical on projects for two to three years or more. By 2019 my symptoms were severe and I decided to tell the client and contractor that I had BEB. To my surprise they didn't seem to mind. Whether my blinking, spasms and faces bothered them I'll never know. But, for me, the truth was cathartic (and a little embarrassing).

July 31, 2017

I feel facial tension in areas like my nose, jaw and cheeks. I also find that I'm squinting more and my jaw is sore on occasion.

Remarks: This was the beginning of Meige Syndrome. I felt like, in a way, my BEB symptoms were the cause of these new ones. I could tell that I would hold my breath, lift my shoulders or wince as a result of this strange sensation that made me blink and spasm. It also seemed that this new tension in my face was my brains way of dealing with my eyes.

August 1, 2017

I work from home. I blink and spasm a lot when I walk through my dark house. I frequently go outside and look just below the sun to make my blinking go away. This always seems to work and feels interestingly exhilarating. It doesn't last however.

Remarks: When I really started to feel better toward the beginning of 2020 the exhilarating sensation I felt when I looked up at the sun started to dissipate.The sun’s cathartic effects have not lasted but early in my BEB journey sunshine made me feel unusually cheerful and well. Almost euphoric. I’m sure there’s a medical reason for this but I don’t know what it is.

August 17, 2017

I saw the eye doctor and he confirmed I have moderate dry eye. I used preservative free drops for a few weeks. They feel good at first however irritate my BEB.

Remarks: I’ve tried a lot of over the counter drops and a couple prescriptions. None have helped.

September 30, 2017

I attended a Dr. Farias workshop in Toronto. I was the most understated case of BEB at the workshop. Most people had the condition for a few years at the very least. It was a four day workshop. We met every day after breakfast in a second floor classroom of a school building in Toronto's Chinatown. There were eight of us. He gave us a lot of useful scientific and practical information about our disorder. We learned techniques and exercises to manage the condition. The doctor was gracious and positive. He also evaluated each of our symptoms independently but in front of the class. There was also an opportunity to meet with him one on one if we so desired.

Remarks: Though each of us may not have had the same symptoms the independent evaluations were extremely valuable. I reflect a lot on what he discussed with other patients as my BEB advanced.

Oct 25, 2017

Drawing on the computer is becoming more difficult. My eyes hurt and they’re tired. I'm in bed by 8 or 8:30 some nights from exhaustion. I've been able to conceal my condition at meetings so far but it's not easy.

Tip: It’s counterintuitive but I notice my BEB symptoms are sometimes better on days I slept worse the night before. That is, the sharper I feel mentally the more pronounced my BEB symptoms are sometimes. Since posting this diary one of his patients told me that Dr. Farias explained to her that cortisol levels are increased with lack of sleep. These increased levels apparently help BEB. Lack of sleep, however, is not good for BEB long term.

November 10, 2017

I got a stationary bike. It’s a great workout. However, my eyes want to close when I ride.

Remarks: I use exercise as an opportunity to work against eye closure. I do this by consistently changing my gaze, staring at an object in front of me, breathe calmly, relax my shoulders, or simply attempt to keep my eyes open using the orbicularis muscles only. If a spasm happens I allow my eyes to close, then relax, and get them back open.

November 16, 2017

I helped my daughter hang pictures in her bedroom today. The whole exercise is more difficult than it used to be. Measure, mark, nail, hammer, stand back, scan, focus… Ugh.

Remarks: Tasks around the house got more difficult over time. It was discouraging. I dealt with this by telling myself, over and over again, that it wouldn't be that way forever.

February 9, 2018

Listening is difficult to do with my eyes open. That makes church tough. I'm always worried other people can see me blink and spasm. I find that I subconsciously try to control my eyes by holding my breathe. Then my breathing gets inconsistent, labored and loud. It's embarrassing.

Tip: With a little practice it’s possible to breathe easy, calmly and consistently.

February 16, 2018

I went with my daughter today to buy a pair of running shoes. It’s the first time I noticed that my eyes were closing more when I talked rather than listened. What’s happening?

Remarks: Activities that used to keep my eyes open like talking or chewing eventually did the opposite. Learning to talk and chew with my eyes open was one of the last things I worked on.

February 24, 2018

We test drove a new car today. I noticed that my eyes are worse when someone I don't know is in the car. It's better than being a passenger though. Then my eyes shut constantly.

Remarks: Driving alone quietly is the easiest for me to do although I've read about many BEB patients that give up driving altogether.

March 5, 2018

I started a new project today. I had to measure the existing conditions of an old farmhouse, make some hand sketches and take pictures. Lots of blinking, squinting and eye closure. I’m glad the client wasn’t there.

Tip: On days like this I found that if I performed tasks slowly and methodically I had less trouble.

March 9, 2018

I had lunch with a colleague today. I was terrified. He didn’t know I had BEB. I eventually had to explain my condition. The rest of the meal went well but it's such a strange condition it’s awkward.

Tip: I found that one of the best ways to control my blinking when someone else is talking to me is to look directly at their eyes and blink when they do.

March 13, 2018

I went to a new doctor today for a novel dry eye treatment. The doctor invented a pair of heated glasses that rest on the eyelids. They're comfortable and the treatment lasted only fifteen minutes. The doctor checked my eyes afterward and expressed the meibomian glands. He said they were already making more tears. He asked me to come back in a week.

Remarks: I told the doctor that I had Blepharospasm, also called focal dystonia. He acted like he understood, but I don't think he really knew what focal dystonia was. Blepharospasm is a rare disorder. It’s estimated that 20 to 50,000 in the US are affected. Women are twice as likely than men to have it. (2)

April 4, 2018

I had my third dry eye treatment today. The doctor said my eyes are producing lots more tears. Not quite back to normal but getting there. He'd like me to come back in a month, then perhaps every three after that.

Remarks: My father and his twin brother's dry eye symptoms resolved themselves over time even though both still have Meige and Blepharospasm respectively.

April 7, 2018

I purchased two pair of motorcycle glasses to help with dry eye. The glasses have a spongy or soft rubber like extension around the frame that closes the gap between my eyes and face. They definitely keep my eyes more lubricated but they also magnify my BEB!

Remarks: I notice that sometimes wearing bandana, hat or even a simple pair of glasses can aggravate my BEB. Covid-19 masks are awful too.

May 19, 2018

My daughter was asked to a friend's prom. They took pictures in a local park. My wife went but I didn't go. Small talk is excruciating.

Remarks: With BEB my blinking seems sporadic, un-natural, and too forceful at times. I like to say that my “blinker” is broken. Something that helped was to concentrate on blinking very lightly. I let my eyelids barely touch. Also, when I focus on even breathing I also like to remind myself to blink. Blinking regularly by choice seems to decrease the urge to spasm.

May 24, 2018

My eyes blink and close a lot when I watch TV.

Remarks: Eventually I decided to try something I had only read about. I taped my eyes open with clear packing tape. I furrowed my brow, applied tape directly above my eyebrows (taking great care) and then pulled the remainder up and stuck it to the top of my head. I'm bald so all of this is easily done. I then add a handkerchief to cover the tape application (so my kids and wife wouldn’t think I was completely nuts). The armature of tape lifts my eyelids and keeps my eyes open, at least for a little while. Eventually the tape slips.

May 31, 2018

I had my fifth dry eye treatment today. My tear production is so good that the doctor would like to go to a three month schedule.

Remarks: I had thirteen more of these treatments over the next year and a half until I didn't need to go anymore.

June 11, 2018

Our yearly trip to the beach was nice but my eyes were awful. It was also embarrassing because we stayed in the house with relatives that hadn’t seen how bad my eyes had become. I could barely read the news on my iPad in the morning. My eyes were closed a lot when I tried to carry items to the beach or walk around town. I went for a bike ride. It was flat but still difficult. I had to stop half way through the ride because I was in tears. So disappointing. I love to ride bikes. 

June 22, 2018

I started a new architecture project today. A small addition. I was on site to take photos and measure. I can't remember ever suffering this much. It was very difficult to measure, read the tape, sketch out the house, and make notes. Every part was difficult. I'm glad the client didn't come home while I worked.

I have had a strange thing happen of late. Right in the middle of a blinking episode my eyes just popped open for no reason. I felt completely normal. It didn't last long but it’s encouraging. In Dr. Farias TED talk he discusses how important it is for Dystonics to “remember” what it felt like before their condition so the broken neuropathways can be re-mapped back to normal.

Aug 10, 2018

Our family visited the grand canyon. So beautiful. My eyes were closed for some of the bus rides and scenic walks. Overall the trip was a success. I didn't fall into the canyon.

Tip: I look directly into a family members eyes and stare to provide relief from spasms.

August 20, 2018

My father wears glasses (because of his myectomy) that have a thin metal bar which extends off the top of the frame. We call them crutches. The crutches hold his eyelids up. I saw his optometrist today to get a pair. I figured they might help to keep my eyes open at certain tasks even though I haven’t had a myectomy.

Remarks: I was quite hopeful that these glasses would come in handy, particularly for driving when I was tired. They didn’t work for me. I found that they irritated my BEB rather than helped. My eyelids also closed regardless of the crutch.

September 1, 2018

We got a new dog today. His name is Bernie. He looks like a black lab, but has white markings on his chest and paws. We are fostering him.

Tip: We ended up keeping the dog. They call it a "foster fail." Turns out the dog changed my life. Walking the dog is great exercise. It’s also tough if you have BEB. Not only must you keep your eyes open, but deal with a dog and all that comes with it. Add rain and an umbrella and you might as well climb Mount Everest.

October 6, 2018

I feel like I'm at the bottom. I took some video of myself working at my computer and trying to read. I can't believe I look like this; faces, blinking, spasms. I look like an alien has taken over my face. It's awful.

Tip: I spoke to a friend who also happens to be a doctor about my BEB. He has a number of Dystonia patients. I explained to him that I don't fight spasms, I allow them to “go through me.” He understood what I meant because some of his dystonia patients have said similar things to him about how they deal with their disorder. I explained that another way to describe this comes from Dr. Farias. He likes to say, “you need to get out of the way" of Dystonia. Fighting spasms creates more tension. If spasms happen and pass it's easier to relax, recover and move on.

October 14, 2018

Walking anywhere is hard because I can’t seem to keep my eyes open. I don’t like to wear sunglasses but I do when I want to hide the fact that I can't see.

November 6, 2018

This past month has been awful. The tremor in my eyes has been more pronounced lately when I try to go to sleep. I can barely look at my phone or computer without pain and blinking. I'm a mess at night. I almost can't watch TV anymore. Driving is awful. I'm considering botox.

November 14, 2018

My drive home from the job site was better today. I relaxed and used a breathing technique that kept my eyes open.

Remarks: I've been working at breathing only through my nose with my mouth closed. This keeps my face out of the equation and gives me little or no facial spasms. I also try to breath through my abdomen instead of lifting my shoulders. I’ve found that when I inhale my eyes tend to open and when I exhale they tend to close. So I made up an acronym for BEB — Breathe. Eyes Wide Open. Blink.— Breathe in through my nose, keep my Eyes Wide Open using the orbicular muscles, breathe out through my nose and keep my eyes open. All the while I try to keep in mind that it's important to consciously Blink on occasion.

I came across the phrase "Eyes Wide Open" before I met Dr. Farias on the Neuroplasticity for Blepharospasm Facebook Page. This has turned out to be a very important part of my recovery. The doctor talks about how important it is to get your eyes open using only the orbicularis muscles (around the eyes).  It's easier to rely on forehead muscles but it's not natural. Besides it might start to look a little strange lifting your forehead every time you open your eyes. I use the Eyes Wide Open technique all day long and it's been very helpful. I can tell after a few years that my orbicularis muscles have become much stronger than they once were. I also understand this is important because BEB patients may lose muscle tone in this area. Particularly if they get Botox.

January 9, 2019

I saw a doctor today to get registered with the state for medical cannabis.

Remarks: After using medical cannabis for a couple years I don't think it's had a direct impact on my eyes, positive or negative. It is, however, useful for my insomnia. It also seems to lower my blood pressure. I've seen this specifically with strains that are high in CBD. I've also only experimented with Indicas because of their calming effect. The nights I have used cannabis and watch tv I notice that my eyes get heavy and I have less control over them.

Feb 19, 2019

I feel like I'm getting enough sleep but I look exhausted. Dark circles under my eyes. I'm depressed and I feel like this condition is sapping my will to live. Will it ever end?

Tip: I found over the years that while prescription sleeping pills work, I feel groggy in the morning. A lot of medications also make my BEB worse. I no longer use prescription sleep medication.

March 2, 2019

I've been working at getting my eyes open quickly if I spasm.

Tip: I do this by thinking my eyes open, or looking up (with my eyes closed). In an emergency situation I stick my chin out or shake my head - but I don't recommend that on a regular basis. 

April 13, 2019

Driving has been tough. Our family went to a college football game this past weekend. I'm on an alumni board at the university. I drove. It was quite difficult and I was exhausted when we arrived.

Remarks: I play the “no blink” game on walks or in the car. I clear my mind and see how long I can go without a blink. My eyes water and sting, but I keep at it. I've noticed the duration between blinks expands over time.

May 13, 2019

This is an awful condition that consumes every waking moment of my life. When I have really bad days I can’t imagine what people are thinking of me at the grocery store or Home Depot. I look foolish with my eyes closing and face jumping around. I can’t begin to express how demoralized I feel many days. It’s absolutely exhausting.

Remarks: Any store is a challenge. There's so much to see. So many distractions. Still. I try to go to the grocery store every day because it’s hard to do. I've got to walk, push a cart, find items, read, smile at other people, say hello, see friends or neighbors, talk to the check out clerk, use a credit card, and pay. My objective is always the same — look normal!

June 15, 2019

I just returned from Sedona, AZ. I had planned the trip six months prior and was close to canceling. We rode our mountain bikes in the desert four days in a row, 52 miles. It's hard to believe I can still ride my bike. It's not easy but my eyes stay open most of the time. I do a lot of grunting and head shaking to get / keep them open when they close. The more dangerous the more wide open they get. However, my eyes are so bad otherwise I had to put my hand on my buddies shoulder so he could guide me through the hotel to our room.

Remarks: I've been riding bikes my entire life. I raced BMX briefly and loved to jump and do tricks. I can even ride a unicycle and juggle at the same time. Perhaps that's why I've been able to continue to ride a mountain bike. But it's not easy. I use the same tools when I ride my bike that I use anywhere else. I try to keep my face relaxed, I breathe evenly and keep my eyes wide open as best I can. If they close I try to get at least one eye open quickly. The challenge with any athletic activity is that my heart rate increases as does breathing and breathing hard tends to close my eyes.

June 24, 2019

We were at the beach this past weekend. I rented a bike on Saturday. My eyes closed on a ride, I hit a curb and I went over the handlebars to the horror of a small number of people in the vicinity. I was wearing a helmet but open sandals. I tore up my legs and feet pretty bad. Demoralized.

July 1, 2019

Our family went camping this past weekend. We met a bunch of friends. We went for a walk on Saturday. At one point my eyes closed, I walked off the road, tripped down the asphalt edge and into a grass swale. Friends rotated being my spotter the rest of the weekend.

July 8, 2019

My dry eye has been pretty bad this summer. I assume it’s the pollen. I have hay fever.

Remarks: I take plant based omega oil daily for dry eye and juice plus because my wife makes me. I don’t know if either help but It can’t hurt.

July 17, 2019

I saw my Neurologist today. I didn’t need a diagnosis but I did feel like it was finally time for botox. She diagnosed me with Meige Syndrome. She took video. I showed her how bad it gets when I do things like look at my phone. She said that she would need insurance approval for botox and would contact me to schedule.

Remarks: Botox definitely alleviated my painful spasms. However, it also made it harder to control my eyelids. For example, when I try to keep my eyes open it’s a bit harder because some of the muscles I was used to using around my eyes to open them up were simply paralyzed.

July 23, 2019

My eyes are awful. I'm getting desperate.

Tip: When I open my eyes I love to feel the very outer corners open up. That means they’re wide open. I sometimes make sure I’m not using my forehead to get my eyes open by holding one finger on my nose and another (from the same hand) on my forehead. If my forehead is scrunching up I know I’m using the wrong muscles to keep my eyes open.

August 2, 2019

I’ve started to walk Bernie at the park. We walked on a trail near our home today for about 45 minutes. My eyes were only open about 25% of the time. I wore my dark sunglasses so people couldn’t see that my eyes were closed.

Tip: Walking is the single most important thing I've done for recovery. I started in earnest in my yard about a year ago. Bernie doesn't fetch. I throw the ball, he runs, picks it up, takes a few steps, drops it and walks away. I walk to it, pick up and repeat. My eyes close a lot during the activity. Particularly when I looked down to pick up the ball. In August we started walking on a local trail in the park. That was even tougher. I started walking slowly then picked up the pace over time as my spasms became less frequent. My eyes would close when anyone would approach or pass. At first I focused on calm even breathing. After a few months I was able to breathe through my nose entirely. My eyes stayed open more too. Then I began to focus on relaxing my face, particularly the muscles below my eyes. These tense every few seconds. I relax them constantly on a walk. If I spasm I let it happen but stay relaxed and get them back open quickly. After about a year I can walk with my eyes open anywhere I go. They are open about 95% of the time. Of course they still close on occasion and saying hello to others may close them, but I get them back open quickly and stay relaxed.

August 8, 2019

I went to my original eye doctor today. They feature a treatment called Ultrasound skin tightening. Apparently it can be good for droopy eyelids, or ptosis, which I have. Saggy eyelids don’t help BEB. The treatment didn't seem to do much either. They say I need three before results are evident. It's expensive so I don't think I'll be going back.

Remarks: Transitions are difficult for me and tend to cause my eyes to shut. I’ve heard this called "change blindness" or “situational blindness.” My eyes want to close when I do things like walk through a door, turn my head, go from stop to start or seated to standing (and vise versa), move from one space to another, look up or down, pass by someone or someone passes me, say hello or goodbye, start a conversation, turn a corner on my bike or in the car, etc. I’ve found that these are all great opportunities to desensitize myself. I try to be dispassionate, observe without judging, take things slowly, relax and focus on keeping my eyes open before change happens or a certain situation (that I know will close my eyes) presents itself.

August 11, 2019

I went to Ikea today with my wife. Very hard to walk around. My eyes were closed a lot. I've also noticed that if there is something I deliberately want to look at (in the distance or right across from me) my eyes immediately close. It's so annoying. My dad often jokes that his eyes are closed in every picture not because they're always closed but that they close just as the flash goes off. It's almost as though BEB is a torturous form of stage fright.

Remarks: Over time I noticed that if I wanted to look at something deliberately my eyes would close. Particularly when I’d move my head in the direction I want to look. One way to get around this is to first, move my eyes to the location I want to look, then turn my head. It doesn’t always work but it helps.

August 15, 2019

Botox was approved. I’m getting Xeomin. I’m told it’s very similar to Botox. Injections were today. Five shots each eye around the eye. I did not enjoy the experience.

Tip: The fist time I got injections I was in a sitting position. I almost fainted. The doctor laid me down for the second round. I understand you can also use lidocaine cream around the eyes before injections to make them less painful.

September 10, 2019

I was stung by a bee while riding my mountain bike two days ago. My hand swelled to twice it’s original size. I went to the doctor today and was put on steroids and antibiotics. I also got a prescription for an Epipen. My eyes were surprisingly good when talking to the doctor. I kind of felt normal. It didn’t last. Very unusual though.

Tip: If I sit up or stand up straight, lift my chin up a bit, relax my lower lids, face, chest and shoulders my symptoms are less severe.

October 3, 2019

I had a visit with the Neurologist today to discuss the effects of Xeomin. It has almost eliminated the painful spasms, but has not really helped with blinking or eye closure. I set up my next visit for injections in November. Three months from now.

Remarks: My eyes still felt pretty good about two weeks before my scheduled injections in November so I moved the appointment to December.

November 14, 2019

I've been working on an architecture project for my brother. I'm surprised at how well I’ve been doing while on the computer.

Tip: I have found, particularly early in my condition, that if I purposefully "see" with one eye or the other it helps reduce my symptoms. This doesn't mean close one eye or the other, just focus in your mind on seeing with one or the other. This is probably a bit like another kind of “Open Focus” technique.

December 19, 2019

It's been four months. I got Xeomin today. I didn't feel like I needed it but my winter related dry eye has made blinking and spasms worse of late.

January 12, 2020

We began a renovation of our three season porch. I tore up the existing carpet, sanded the floors, cleaned the bar, fixed a door and stained the new step. I had to read directions, go to the store, and use various tools. A few light spasms, but very tolerable. My eyes were great!

Tip: I used to look in a mirror and stare into my own eyes to provide relief from spasms.

January 22, 2020

I met with Dr. Farias on a Facebook video call today. I wanted to explore strategies to alleviate the trouble I’ve had talking and keeping my eyes open. He thought I needed to do two things. Practice reading out loud with one eye covered, then switch, then read with none covered. He also suggested relaxing my face, specifically the muscles under my eyes.

Tip: I build up a lot of tension in my lower eyelids and lower orbicularis muscles. I relax them over and over again all day.

February 6, 2020

I'm scheduled for botox in March. I called to put it off another month. I don't feel like I need it yet.

Tip: I remember Dr. Farias saying the BEB sufferers were “allergic” to stress. This seems so true. I spend so much time relaxing muscle tension, particularly in my face.

February 18, 2020

I did a site visit for a potential new project today. I had to walk around the job site with the owner. He knows I have BEB. It went OK. My eyes weren't bad but I had hoped they'd be better. I'm still having trouble talking and keeping them open but no problems listening anymore - which is kind of miraculous.

Remarks: Before my symptoms became severe I used a digital metronome app while I drove. The average person blinks every four seconds. I used the metronome to time my blinks, 1 second, 2 seconds, 3 seconds, blink. Repeat. Sounds insane but it does reinforce an involuntary action that's seems to be broken in BEB. I don't know how effective this was independently, however, I'm beginning to believe that everything we do adds up. The more my eyes are open the more they stay open over time.

February 24, 2020

I built a chipboard model of a bridge to help my seventeen year old understand a high school project she was working on. I had no issues with my eyes. it was so much fun!

Tip: Even though I chose not to get Xeomin again I feel like the injections benefited me. For the first time in a couple years I knew what it felt like not to have painful spasms. I wonder if this has helped me feel better of late?

February 26, 2020

I presented a business idea to my client today. She knows I have BEB. My eyes still close a lot when I talk but once I got going I did better.

Remarks: I’ve noticed that the more interested I am in a subject the less I blink. It does take a bit of warming up though.

March 6, 2020

My wife and I agree that I'm doing well and don't need botox injections. I called the doctor today to cancel permanently.

Tip: I find that if I relax my tongue and let it fill up the bottom portion of my mouth, open my mouth slightly, and relax my face my symptoms subside.

March 8, 2020

I went for a Mountain bike ride today after six months off. I had to stop every 10 to 20 feet for the first fifteen minutes because of eye closure. Got a little better after that but not much. I’m a little perplexed. I feel like my eyes have gotten better, but not on my bike. I wonder why?

March 30, 2020

I went to Home Depot today. Walking around was easier. A little blinking and some eye closure but pretty good.

Tip: I find myself squinting a lot when my eyes begin to spasm. I’m much better at anticipating the spasms and relaxing before I get in trouble.

April 3, 2020

I've been trying to ride my mountain bike just about every day. Still lots of eye closure. I'm squinting a lot which turns into my eyes slamming shut on occasion. I’m trying to stay relaxed and release the tension under my eyes constantly.

Tip: I stretch my face and jaw by opening my mouth wide in various ways. To alleviate tension in my jaw I stretch my tongue by pushing it against the roof or floor of my mouth.

April 13, 2020

I worked on my front porch roof today. I had to caulk the roof edge. My eyes were great!

April 21, 2020

My eyes are open on walks almost 100% of the time now.

April 30, 2020

Lots of yard work today and planting. Something I haven't done in four years. My eyes were great again!

June 8, 2020

Did wings on the grille tonight. My eyes are open the whole time. Cooking is fun again.

June 10, 2020

I went to the beer distributer today to pick up a case of seasonal beer. I actually spoke with the employees. I used to avoid talking to anybody like the plague. My eyes still close a bit when I talk or feel anticipation about something but they are much better than they used to be.

June 14, 2020

Like most evenings I watched TV last night. Almost no symptoms anymore. And no more taped forehead!

July 15, 2020

It's 5:48am. As I sit here and write this I feel like I did before I got BEB. What is going on?

July 28, 2020

My eyes have been very good most days. Stress and booze continue to be the two worst things for symptoms. I continue to wonder why they’re still awful on my mountain bike. Lots of spasms. Not hard ones, but my eyes close a lot. I’ve been most successful trying to keep them wide open and relaxed. If they want to close, I allow it, then get one open quickly and continue to ride (my right is easiest to get open most quickly). Then I try to relax my facial muscles so the closed eye opens. Best to ride with two open as long as possible, then go to one, then to none and stop. Riding with only one eye is challenging. I’ve had a few accidents. Went over the handlebars last week. Some scrapes and bruises but nothing terrible.

August 13, 2020

I’m getting more work of late and having meetings. I met new clients on site the other day. I was having a bad day so I told them about my condition. Wearing a mask (Covid-19) makes me more blinky than usual. Riding my bike is still really tough. I’ve decided to treat it a little bit like I did with walking. I ride slowly, stay relaxed and keep my eyes open as long as I can. If I let them close instead of fighting the spasm it definitely keeps me more relaxed and they stay open longer. Also. Blinking on purpose seems to make spasms more infrequent, however, If I blink too much it sometimes turns into a spasm. Delicate balance.

Tip: Fighting spasms creates more facial tension. The tension builds and makes spasms worse.

August 18, 2020

We went to a picnic this past Saturday. I played badminton, volleyball, horseshoes, and corn hole. I haven’t been able to do most of those things without lots of spasms for years. It wasn’t perfect, but I played.

August 22,2020

I ride my bike almost every day. It's still not easy, but I'm seeing rays of hope here and there. While riding a few days ago my eyes suddenly relaxed and stayed open. It didn't last long as a young rider almost collided with me going too fast trying to pass. With that said, I haven't experienced less facial tension and eyes wide open like that in at least a year. It's almost as though my brain shifted from one map to another. Maybe things will turn around?

September 13, 2020

I'm still riding my bike almost every day and I'm getting better! My eyes have been open longer and fewer spasms overall. Not perfect, but I'm starting to remember what riding was like before I got sick. I'm trying to stay relaxed and opening them a bit wider before I know I'm going to encounter something that will make me spasm. These things include rocks, roots, downhill sections, hard turns, low trees, and brush that extends into the trail, etc... I hope this easier riding continues. I should also add that I've had some awful jaw pain (mostly the temporomandibular joint on left side) for the last five to six months. That too is subsiding a bit. I've been conscious to relax my face and let my tongue rest gently in the bottom of my mouth. Lots of facial stretching too. 

October 8, 2020

I went over the handlebars two weeks ago on my mountain bike. My eyes shut on a steep downhill section. Panicked, slammed on the brakes and head first went flying. Actually flipped twice. Insanity. Ribs are still sore, sprained hand, small cuts on my face, badly bruised with large scrapes on my back, wicked Charlie horse on my right thigh for a couple days. I'm 51. My Dad would say "act your age!" So I got right back on the horse. I did a 3 hour ride two days later. I'm getting better. I can ride further and faster than a year ago. My eyes still shut on occasion but I will never give up. 

October 9, 2020

My eyes are perfectly normal at night. I can watch TV without any issues. In fact, other than interactions with others, my eyes are almost back to the way they were before BEB and Meige.

October 21, 2020

I went sporting clay shooting this past weekend. Second time using a shotgun in my life. Beat everyone in our group! Riding has been great. Meetings with clients are going well. Just small intermittent spasms now. All manageable. Drove 7 hours yesterday to and from meetings in CT. All went well. I feel like the luckiest guy on the planet - a walking miracle. Hard work and dedication paid off. 

November 11, 2020

I went for a brisk walk with a friend the other day. First time I've walked quickly and talked with someone. To my surprise it was very challenging. Lots of eye closure and squinting. Riding my bike is still getting easier and easier.

January 5, 2021

It occurs to me that I have not included anything in this diary about my Peloton stationary bike. I got the bike in November of 2017 just as my symptoms started to get more challenging. I rode the bike religiously for about a year, after that sporadically. I found that my eyes closed on the stationary bike just as they did on a mountain bike due to increased heart rate. The harder I worked out, the worse my symptoms. However, there was no closure associated with danger, or lack thereof, as is the case on my MTB.

I spent a great deal of time on the Peloton working at keeping my eyes open. My sessions tended to be 30 minutes in length. Strategies I used included staring straight ahead and playing the "no blink" game, staring at a fixed point in the room, staring at my own eyes in the reflection of the video screen, moving my gaze about the room in a circular fashion - left to right, right to left and generally using the "eyes wide open" technique. I did notice over the course of a couple years that my eyes improved, although slowly. In the end I surmise my overall progress is likely due to the accumulation of hours of hard work getting and keeping my eyes open, regardless of activity.

I rode the Peloton the first time a couple days ago (along with approximately one million other people on January 1) and noticed that my eyes were remarkably good. I could feel the subtle urge to spasm and yet my eyes stayed open most of the time. It felt as though BEB and Meige had becoming recent memories and yet, a lurking pest.

Covid mask wearing continues to be a challenge but talking with people (when without a mask) and my general day to day has be wonderful. I'm doing very well. 

February 13, 2021

This is the wide variety of eyewear I employed over time to help my condition. Most of these items were used specifically for reading (at home as you could imagine). Each item corresponds to a description. I found that a few things including limiting my field of vision, dimming light and blocking wind were helpful. Unfortunately, the very act of wearing eyewear eventually caused more spasms so the majority of these were somewhat helpful but only briefly.

1. Tanning Bed Goggles. I couldn't wear these for very long.
2. Homemade paper glasses covers. This was the most helpful device I had. I believe this was the case because the item did not touch my face and cause more spasms.
3. Pinhole glasses also called stenopeic glasses. There are a wide variety of these and I even purchased sicky-back pinhole material and added it to my glasses. 
4. Eye patch. I wore this on either eye, switching from time to time. Helped with reading.
5. These are custom glasses made with crutches. They are helpful but without botox injections my eyes quickly became irritated and I blinked right through the crutch. My father, who had a partial myectomy, uses these daily and they are quite helpful.
6. Sleep goggles. Used to keep the eyes moist. Did not help my condition.
7. Motorcycle goggles with foam interior sides to keep out wind. Helpful but eventually caused more blinking.
8. Mid-size goggles. I liked these a lot but it never took long before they caused more blinking than helped.
9. Steampunk / dystopian goggles. Helpful but the same issue as anything else that touched my face.
10. Welders goggles. Very helpful and I could wear these a little longer. Probably because they met my face further from the eyeball. 

March 8, 2021

I've walked my dog through the winter. My BEB is definitely worse in cold weather. Frigid air and wind make me blinky.  I'm still also really struggling with my mask which aggravates my BEB.

Tip: The cold weather has been a great opportunity to keep reminding myself to relax and get the eyes open. When my eyes want to spasm I just let go, let them close, get them back open and keep walking.

March 16, 2021

Tip: I was recently asked by email to explain how I practice the "no blink" game to encourage neuroplasticty. The question was related to how I can do this without forcefully keeping my eyes open since it's counterproductive to fight spasms. I've explained it this way; "It’s like an itchy throat in the middle of a board meeting and trying to avoid a coughing fit. What one might do is relax every muscle in an effort to allow the cough to pass. In the same way I might start by staring straight ahead. Very quickly I can sense that my eyes want to close. Without engaging the muscles in my eyebrows and forehead I gently use the muscles around my eyes to keep my lids open. At the same time I relax every muscle - face, neck, shoulders, and body - and think about my eyes staying open. This might result in keeping my eyes open for only another second or two. But, In my experience, those seconds eventually add up. You can also do this exercise without engaging the muscles around your eyes at all and just think about the eyes staying open longer. "

March 22, 2021

It's been a few months, at least, since I've been on my mountain bike. I was pretty worried it wasn't going to go well. I've done two 45min. rides over the last two days. I had forgotten what it was like to ride without BEB, now I'm getting a taste. My eyes still want to spasm at obstacles, bumps, rocks, hills, hard climbs and tree stumps but by simply "flexing" the muscles around my eyes and keeping them gently open they have not closed on both rides. Fingers crossed.

July 2, 2021

I'm a steady 90% at this point. Riding my bike is not without eye closure, but I enjoy rides when I don't think about BEB much if at all. Driving and walking are almost trouble free. Talking is still challenging at times and I need to remember to relax, slow down and focus. I can watch TV and use the computer or my phone without issue. And, post pandemic / mask, I can communicate with cashiers or workers at the grocery store, home depot, etc... without much issue. There are times that symptoms surface but I relax and move on. If you met me today on the street in passing you wouldn't know that I had a neurological condition.

It's been about 4 1/2 years since my symptoms began in January of 2017 and today I have my life back. There's not much more to say on the matter other than how grateful I am for Dr. Farias. This is probably my last post unless things go south. And if they do you can be sure that I'll fight like hell to get my life back. If I had to tell someone in an elevator in thirty seconds what I learned over the last few years it would be this: Don't give up. The brain is an amazing plastic machine. Recovery takes time. Tap into the vast possibilities of the mind and believe. If you look hard enough you'll have all the tools necessary to get better. With this condition, and perhaps even many more, healing is likely for those who have the will and patience to fight.

(1) https://rarediseases.org/rare-diseases/benign-essential-blepharospasm/

(2) https://ghr.nlm.nih.gov/condition/benign-essential-blepharospasm#statistics