Frank's Blephorospasm Page

 

 

 

Blepharospam...

  Blepharospam is the common name used for the medical condition refered to as "Benign Essential Blepharospasm".  For a quick definition, BEB is a neurological disorder that causes involuntary contractions of the eye muscles. These involuntary contractions of the eyes can manifest itself under a wide range of symptoms from uncontrollable blinking or twitching of the eyes to the clamping down shut of the eyelids.  

Introduction:

  Hi, my name is Frank Gerry and I was diagnosed with Benign Essential Blephorospasm sometime in 1999. In those days, Blepharospasm was little known and understood. That sounds a little dramatic, though in actuality it was precisely the state of the medical understanding of this disease just those few short years ago. 

 I suffered with this disease for nearly three years before anyone knew what I had. Then it took nearly five years after my diagnosis before doctors were finally able to treat me effectively.

 Since then, medical knowledge in this field has grown enormously. And I would like to pass along my experiences and my knowledge of this disease to anyone who may now be having these involuntary contractions of the eye muscles.


My history:
  
  For several years prior to 1997, I often spoke to people by lifting my head up, tilted back at an angle, and squinted my eyes somewhat to look at them. I never even knew I was doing that until one day a collegue at work made a joking mimic of my head movement. He thought I was doing it as a "I'm superior" nose in the air kind of thing. That was the first moment I thought something was wrong.

  Though, it wasn't until early in 1997 that my eyes bothered me enough go to the doctor. By then I was having a little bit of trouble with my eyes blinking while trying my hardest to stop it. Or my eyes staying clamped shut for a few seconds. It wasn't anything serious, these bouts only lasted a few seconds at the most. Nobody even noticed anything. I figured I must be having a lot of eye strain from spending all day, every day in front of a computer screen.

  For the three years from the beginning of 1997 to the summer of 1999 I was bounced around from one doctor to the next trying to diagnose what my condition was. The fact that I belonged to an HMO I'm sure didn't help.

 My primary care physician had no idea what my condition might be so she sent me first to the ophthalmologist. The eye doctor found my sight to be perfect 20/20 vision. Though it wasn't without being basically insulted during the examination. I believe his hostile words to me were, "Why are you wasting my time? It's obvious you have some kind of psychological problem". I didn't wait for the exam to end. I angrily got up and told the doctor to go to hell as I walked out.
 
  As I found out later, there were still many in the medical profession in 1997 that still believed that there were only two causes for involuntary eye or facial muscle contractions: 1) Tumors in the brain, or 2) psychological disorders. Since I had normal vision and no eye abnormalities, my primary care doctore then sent me to a psychiatrist.

 My new psychiatrist quickly diagnosed me has having anxiety and prescribed  medication for me, regardless of the fact I told the doctor I didn't think I had what he told me. Though, he assured me I had anxiety, and the pills would help me overcome my eye problems. To be honest, hearing that I was so relieved. I took the medication faithfully, month after month. When I reported to the psychiatrist the meds weren't helping my eyes, nor made me feel any different, he just up the dose or prescribed me something else.

  It took me close to a year to figure out that I didn't have anxiety and finally just threw away the pills. My psychiatrist was the second incompetent doctor I had to deal with with at the HMO.

 My next doctors were the Neurologists. I went from one to the next to the next. None of them knew what was wrong with my eyes. These doctors were the most incompetent of all. And I say that not in anger (I'm writing this a decade later). I'm saying this because it is true. Any one of those Neurologists should have sent me to get a CAT scan or an MRI. As one doctor several years later told me, "Any time a patient has any type of neuro-muscular facial problem they need to get an MRI right away. But don't worry. If it were a tumor you'd be dead already." 

  And it only got worse with the HMO's Neurologists. I was put though a series of experiments. I call them "experiments" because in truth, thats what they were. Basically, they inserted probes into my forehead and around my eyes. They had a theory that the electrical impulses were not making their way from my brain to my eye muscles. I watched the output of the displays on their machines showing the electrical signals as they painfully burrowed the needles into my face. One machine after another. In the end, they had no idea what the data they collected meant. So, they ended up prescribing me neurological medications.

  After almost a year on various neurological medications, my eye condition grew worse. The meds were obviously a waste of time. So, I went outside of the HMO to see an different eye doctor. I thought, the first eye doctor was so bad, he may have just misdiagnosed my eyesight. Time for a second opinion. This eye doctor immediately "discovered" I had a vision problem and prescribed corrective eyeglasses. I thanked God that I finally found a doctor that could help me. I got the glasses, actually a couple of pairs, and wore them religiously for few months. I even convinced myself that they were the solution to my eye troubles. But one day, I remember having a few beers with my friend Jeff when he told me, "Frank, those glasses aren't doing anything. I think your eyes are worse than they were before.". He was right. The second eye doctor turned out to be even worse that the first doctor. Unbelievable!!! The eyeglasses were tossed in the trash.

 By the end of the spring in 1999, I went back to my Primary Care Physician and discussed my history whereupon she sent me to another ophthalmologist. This was the turning point. I can't remember the doctors name, but I do remember him being very kind, and understanding, and very intelligent. Something I wasn't use to at the HMO. Anyways, he took one look at me, and within 5 minutes he explained I had a condition called Benign Essential Blepharospasm. It wasn't well known nor well understood what the cause was. And it was almost never seen in anyone as young as myself ( thirtysomething at the time). It mostly struck elderly people and was three times more likely to effect women then men.

  My treatment started that first office visit. A neurotoxin named Botox was injected into the muscles around my eyes. 


The Treatment:

  Botox is a wonder drug for people suffering with my disease. However, in order for Botox to be effective it must be injected with the right dosages and into the right muscular locations around the eyes and forehead. And thats where the
difficulties with the treatment lies. Since everyone diagnosed with blepharospasm has a different neuro-muscular affliction. 

  Botox injections must be custom tailored for each person. And the effects only last between 2 to 6 months depending on the dosage and the individual.

  My treatment didn't go well due to the issues I mentioned above. Although, the treatment always had some temporary benefits, my disease grew worse and the Botox wasn't providing the relief I needed.

 By mid 2000, I remember having to hold my eyes open with one hand while driving my car. Otherwise, my eyelids would clamp shut.

 I spent several years with this ophthalmologist. He tried varying the Botox treatment each time, but it was to no avail. The Botox wasn't helping or the doctor didn't know how to properly perform the treatment. In any event, by 2002 ( I think) I left the horrible HMO and went to see a new ophthalmologist at the Lahey Clinic in Burlington, Ma,

 This doctor wasn't any better. I spent two years under his care and he could not adequately treat me. He told me that he gave me the maximum dosage of Botox and could give me no higher dose. I still suffered, day in, day out. I was at the point where I believed doctors could do nothing to help my eyes. I often wondered if my eyes would get even worse and I would become disabled, basically not able to work any longer, drive a car, or any of the everyday activities most of us take for granted.

 To his credit, that doctor realized he couldn't help me and eventually refered me to another ophthalmologist at Lahey. That's were I met my current doctor, Dr Tucker. She was a miracle and turned everything around for me. Today I lead a normal life, for the most part you can't even tell I have an eye disease. All thanks to Dr. Tucker.

 She immediately recognized that I needed a higher dose of Botox and wasn't afraid to inject me with the higher levels, as my other doctors were. She also knew the right places in the facial and eye muscles to inject the Botox. She was a godsend.

 Dr Tucker then proceeded with operating on my eyes. She cut some of the muscle in my right eyelid ( which was the worse eye). That ended up providing even more relief from the muscle contractions and the need for less Botox.

 By mid 2004, I was living a normal life again ...... as long as went in for treatment every three months.


 Overview:

   The reason I wrote my history with this disease was to share with other people my lessons learned. In that it may help other people who have been diagnosed with blepharospasm who are having symtoms but don't know what it may be.

  In my case it took 8 years for doctors to understand what disease I had and to finally treat it effectively.

  Eight years! The point being we don't live in some kind of modern utopian 
medical society. Doctors still know very little about so many illnesses. And it's obvious there are so many incompetent doctors.

 The main lesson to take away, is that every person who comes down with some kind of disease or affliction ( which turns out to most of us at one time or another) needs to take responsibilty of their own medical care. People cannot rely on doctors to take care of them. Which is what I did. I trusted them. I was raised to trust doctors, as most of us are.

 People need to take control of their own medical care. They need to see many doctors. Not just second opinions. Because, in my case, many of those second opinions were even worse that the first incompetent doctors. So, always keep going to new doctors until you are satisfied your are getting the best medical care possible.

 People need to be proactive and research their conditions on their own. The internet provides an amazing amount of information on every conceiveable medical condition. This web page is an example of that.

 And finally, people need to communicate with other people who may have their same illness. Sharing stories and advice, names of good doctors, etc, is the best way to be proactivce and take charge of your medical condition. This kind of sharing of knowledge can be done with support groups or on the internet with various blogs and web sites.



Some Good NEWS !!!!

  In the spring of 2007, I read in the news that there was an Italian study that showed caffeine may protect against the onset of Blepharospasm and possibly may even help with the symtoms. That the more caffeine you took ( coffee drank) the later on you would develop the disease. 

  Well, I was intrigued by this. First of all, I was a non-coffee drinker. I consumed very little caffeine per day. Was this one of the reasons I came down with this disease so early in life? Would I have been protected if I was a coffee drinker? Who knows?

  So, I thought I should experiment with different doses of caffeine and see if it helps me over the long term. And keeping in mind the plecebo effect.

 I started taking caffeine suppliment pills ( i.e No-Doz) in May 2007. 100 - 150 mg per day. And I have seen a tremendous improvement in my condition.

 I should stress that, for me, I believe caffeine has helped tremendously. It may not help everyone. It may worsen other people's conditions. But for me it's helped.

 Previously to the spring of 2007, I went to the doctors every three months like clockwork to get my botox injections. Normally, by the two and half month mark I would have difficulty with my eyes and struggled a bit until I could see the doctor again in a couple of weeks.

  Once I started taking caffeine, I didn't need treatment until five months past my last visit. At that time, I though, OK, maybe that was a fluke, or I was experiencing the placebo effect. I'll see what happens over the long term.

 Well, right now ( early January 2008) I am at the 4 month mark since my last botox injections. My eyes are great!!! I've been forgetting I even have this disease. And I believe that I can easily go another month before seeing the doctor. I really truely think that caffeine has made a difference.  


 
Contact Me for any questions:
 
   I had undergone so many different treatments for blepharospasm: acupuncture, dietary suppliements, etc, etc. I couldn't possible write about it all on this web page. If anyone who reads this page would like to further information or ask any  kind of question please feel free to contact me.

 Unfortunately I don't have my website e-mail set up yet. But I promise to set this up very shortly, so if you check back I should have it running.