Three years to say Blepharospasm

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It all started in December 2011. I was driving in the dark and suddenly my right eyelid began to behave very strangely. He closed I could not open it. The sensation I felt was that the lower lid and the top you can only do so as they were appicciate a sucker (later still use the term suction cup because that's the feeling I got right away). I remember that night had to stop because I could not drive.

I did not bother much happened and then when I went from the eye doctor for a check told me what had happened. The diagnosis was "dry eye". They advised me to keep my eyes well lubricated with artificial tears, which in any case already did.

The following month, the situation began to deteriorate. The "nerve" running through the right eye started to cause pain, dry eye increased despite the use of tears.

In July 2012, my eyes have become very sensitive to light. His eyelids began to close to "vent" much more frequently and the light make a huge hassle. Not to mention the air that disturbed me always more.

The eye doctor advised me to make a visit to an endocrinologist (since I suffered from chronic thyroiditis) and a check by a specialist in psychiatry (unfortunately are prone to depression risk, and for years I used antidepressant drugs under medical supervision).

 

October 11, 2012 it was diagnosed an abrasion to the cornea in both eyes. From this day on the course of the disease, although no diagnosis, inexorably began to worsen.

All those strange movements of the head that I was trying to open the eyes caused me severe neck pain. The trigeminal often inflamed. The pain increased head.

 

Here begins my journey to find a diagnosis and here begins my life that is "consumed" within the walls of the home and the office. Energy to do anything I do not remain.

 

The visit dall'endocrinologo confirming chronic thyroiditis but excludes associations between thyroid problems with noise I was feeling.

The control with the specialist in psychiatry confirms that the drugs, I had taken in the past and the small dose of antidepressant that even I assumed, could be the cause of my problems. We decided together to discontinue treatment with the antidepressant. I could not take more medication for a year.

The concerns of the doctors I've met, their manifests helplessness in giving an explanation and therefore a diagnosis, the constant and insistent comments from people who met and that "dictated" suggestions as they could (which the doctors were not), phrases that I felt repeat from these people "is it possible that there is nothing to do?" he was slowly destroying me. I was locked up at home avoiding all the people to not be annoyed by their continuous and useless questions that I could not answer. Their screeching voices inside my ears. I read in the eyes and voice of physicians impotence and the same helplessness was stealing me.

Every time I found the strength to meet a doctor this small hope gave me the strength to carry on. Then came the day of the appointment and following the disappointment and the feeling of helplessness was returning more and more heavily to be felt. I remained impoverished that much needed energy to live a normal and peaceful life.

Fortunately in this journey I made to follow a psychological level, and this has helped me to not let me go in despair.

 

I began to run a series of tests by excluding many diseases. Sjogren, ANA - Anti ENA (anti-SSA, anti -SSB) - rheumatoid factor - orbital ultrasound OO.

It was a great period of despondency and despair.

The medical practitioner sent me asked by another doctor of other diseases and the latter relentlessly asked me "why are advised to do this specialist examination. There is no connection between his illness and injury that I care. " The one that created the most inner pain was that this sentence was that almost immediately after explaining my ailments.

 

Meanwhile, the pain in the cervical and trigeminal increased to such exponential levels that I thought these were the causes of my eye problems.

As you can read not use the word "blepharospasm". This word will start to use it only on December 9 2014.

In September of 2013 my attention is literally moving to severe pain in the cervical and trigeminal.

I went to a doctor posturologist who address me by a ortodentista to put the bite. I began to treat me with chiropractic, then with osteopathy. I performed RX and MRIs of various kinds. Only surprise was that they discovered that my cervical spine was reversed.

The severe pain I often forced to resort to periods of illness. I found a bit 'of relief through the pain therapy which I had submitted to me for several months.

 

In March of 2014 the biggest disappointment. The family doctor suggested I recatami for specialist examination by a neurologist at a renowned university hospital. The specialist he dismissed with a few lines of "diagnosis": "The clinic is not attributable to neurological disease. We recommend psychological / psychiatric revaluation adequate taking charge ". Useless were the my grievances and my attempts to explain to the doctor that I was already followed by a psychologist and in the care of a specialist in psychiatry.

The image of that day is etched in my mind. I remember the surgery available, the three chairs. In front of me at about three meters away the doctor, my daughter next. He never approached me, he just listened to my words (listen ??? I do not think that the word is correct). That day I felt the world crashing around him, hopeless and exhausted. A thousand questions were appropriate in my mind generating a strong confusion. How could I continue to work, to carry out a normal life, drive, get ready to eat, to do small chores, go to the grocery store. My movements were already confined inside the walls of the house as I could survive this way.

I had to necessarily anticipate the control by the specialist in psychiatry since that diagnosis had opened the back door of the depression. I was forced to increase the antidepressant dose (I stop taking it in November 2012 and the second half with a small dose in November 2013 and now forced to increase the doses).

After this sad meeting with the neurologist excluded resorting to other expert opinions of the same disease, I was afraid of being passed by hypochondriac (... or was afraid of becoming a hypochondriac ??)

Here began the journeys of hope in distant places in search of a name and excluding the word neurology from my vocabulary. Verona - Imola - Valeggio - Alexandria.

In December of 2014 I finally decided to entrust to another neurologist. That day for the first time I heard a doctor say "blepharospasm".

Even after diagnosis, however I felt a person alone, isolated, different and without a future.

Fortunately in August of 2015 through the popular social network Facebook I met a page dedicated to dystonia and later a group created by dystonic people. There I got the courage to ask questions and get answers. With them I began to learn more about this disease and I found them a lot of friends with whom to share my experiences and confront their issues sometimes so different, sometimes so similar to mine.

Feel alone and be classified as sick imagination destroys the man. Find someone who understands what you are feeling well because he is trying it helps you to be reborn to new life. With these my new friends I learned to live with dystonia but not be subjected to it.

As you can see I never speak of mei family. The reason ? Simply do not accept that I'm sick. As a long time had not accepted my state of depression now not accepted the dystonia.

Only person who's been there for all these adventurous My research is my daughter. Alone with her I can talk about my feelings, what I'm trying and alone with her I can afford to say "I'm fine." You understand that my health is good but that the dystonia remains. Thanks my little!

 

Cristina