- CASE FILE
I have had debilitating excruciating eye pain since January 2018 and unable to keep my eyes open.
ABOUT THIS CASE FILE
I am 51y/F and started experiencing eye pain January 2018. At the time was diagnosed with dry eye (meibomian gland disorder/blepharatis), however as time has progressed the dry eye has improved but the eye pain has gotten much, much worse. The dry eye is being managed with lower punctual plugs and Xiidra eye drops which I think may be affecting my vision. The debilitating eye pain is a constant burning, pins/needles, nerve pain along with extreme photosensitivity. It manifests as pressure behind the eyes which feels like a tight rubber band grabbing my eyes which leads to headache/migraine pain. Doctors have been unable to find the cause of the pain or ways to manage the pain which as mentioned previously is is a burning, pins/needles feeling along with pressure, pulling, grabbing sensation which radiates through my sinuses, upper cheek, and roof of my mouth. I also have facial spasms, particularly unilaterally on the left side. The pain is constant and exacerbated after jaw movement (i.e chewing, brushing teeth). I am also functionally blind - meaning I am unable to see because my eyes are forcibly closed 90% of the day and have been diagnosed with atypical blepharospasm/apraxia of the lid opening. I have undergone multiple Botox treatments to try and keep my eyes open with no success. I have been on multiple medications to manage the pain - prednisone, gabapentin, indomethacin, amitriptiline also with no success. In addition I have had multiple MRI's of the brain and orbit which have come back normal. My cornea's are fine, eye pressure is normal, no glaucoma or cataracts. I have had blood tests to check for Graves Disease, Sjogren's, Lyme Disease, Western Blot all of which were negative and have tried treatments for Sinusitis, Hemicrania Continua, Optic Neuritis. I have seen over 20 Ophthalmologists, Neuro-Ophthalmologists, Neurologists, Rheumatologists and ENT's to no avail. I have suggested thyroid eye disease and trigeminal neuralgia and they have said no. The Doctors have no solution and keep bouncing me back from specialist to specialist, repeatedly saying it is a complicated case. I even had a Doctor come out and say "I don't know what you have". My independence has been lost. I am no longer employed, denied disability, and depend on my parents to help me in every aspect of my life as I am no longer able to live by myself. I am afraid that there will not be a way to manage this unrelenting pain. Eyesight is something most of us take for granted; the ability to read, drive, watch TV, go to the movies, cook, clean, ride a bike and basically take care of myself are things I did in the past without any hesitation, leading a very active lifestyle. Dealing with the daily chronic pain takes every ounce of energy in me leaving nothing left behind. Everyday is a constant struggle which has lead to anxiety and depression. I volunteer at my church when I can as it is my faith that keeps me going.
Hearing about this show/forum has given me the strength to say I need to be heard and helped just like I know many of us also feel. This is the last resort for many of us to be taken seriously and not feel alone. Hearing about this show has shown me to still have faith in the medical community, PLEASE HELP!!!
I have stopped asking why, for many of us have been chosen to go through our struggles for reason's we sometimes will never understand. I want my life back to be able to do better, stand up and fight for other's who are less fortunate. This journey has shown me there is much more to life. Peace, blessings and thank you for your help in advance.