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Unrelenting, Agonizing Eye Pain: My Personal Battle with Corneal Neuralgia

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Unrelenting, Agonizing Eye Pain: My Personal Battle with Corneal Neuralgia
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Unrelenting, Agonizing Eye Pain: My Personal Battle with Corneal Neuralgia

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My vision fades out…and I can no longer read. I see the faint outline of words but the pain is so excruciating…like razor blades against my eyes. I hold my breath, waiting for the pain to subside, even a little. I want to SCREAM out. But I can’t. I know they won’t understand, and I know it won’t go away completely, probably not ever. You would think that after six months of dealing with this, I would be used to it. But I’m not. There are no words to describe pain like this.

I am only 21 and I have an extremely painful disease called corneal neuralgia. You will not find it in medical dictionaries. In fact, doctors don’t even know it exists. They diagnose and treat eye pain based on what they observe. With corneal neuralgia, there is often nothing for them to see because the source of the pain, malfunctioning nerves of the pain system, is hidden. They can only be detected with a special costly microscope that few doctors have access to.

Up until then I thought that I knew the meaning of pain. We all experience it at some point in our lives. But that of corneal neuralgia is much different. I cannot find the words that describe the magnitude of pain that I endure.

It started with my eyes feeling a bit scratchy, which I thought nothing of it until it became progressively worse. With time, I found myself waking up with the feeling of razors cutting across my eyes, struggled through the day in relentless pain and fall asleep in pain. I can’t escape it. I tried so hard to be proactive. I went to ophthalmologists and did everything they suggested. I tried about 18 different eye drops and used warm compresses. The drops only made it worse. Nothing helped.

This was a battle I was losing. Months passed and the co-pays and the cost of over the counter and prescription eye drops was adding up, and I didn’t have even the slightest bit of relief. As a college student with 2 part time jobs, I often found myself having to choose between the costs of my medical care and eating dinner.

I thought that if private practice ophthalmologists couldn’t help me that maybe the famous ones who work in academic centers would be familiar with this disease. I was wrong. They explained without the slightest hint of compassion that in order to have eye pain something had to be physically or structurally wrong with my eyes. Pain like I describe could not exist without a cause. And they couldn’t find one.

After a few visits the nurse refused to schedule more. “We did the tests. You need to get over yourself and realize that nothing is wrong with your eyes. I’m sorry but we cannot help you”. She told me over the phone. Get over myself? Her tone was cold.

I had hit a brick wall. The pain was so intense I didn’t want to move, I didn’t want to have eyes. At times I began blaming myself. Was I crazy? If it was all in my head, then why couldn’t I get it to go away? Why didn’t it ever ease up? By now the eye pain was completely unbearable. I didn’t even want to wake up each morning. I couldn’t study. At times it was so bad that I wanted to vomit. I tried to spend as much time sleeping, the only time I was not in agony.

I had a lot going for me. I worked hard and I was proud of myself. I had excelled through college and was accepted to graduate school in the fall. The last thing I wanted to do was take my own life but I thought suicide would be the only way I could escape the pain. Many thoughts kept passing through my mind. Why me? Was I being punished? Why now? Why my senior year of college? And then there were the other questions that plagued me at night. Am I crazy? What will happen to me if the pain never goes away?

Then I heard of the work of Dr. Rosenthal and his nonprofit Boston EyePain Foundation that existed only to help people with corneal neuralgia. He listened to my story and for the first time I felt that someone really understood. Dr. Rosenthal told me that I wasn’t alone; that he had seen many patients like me. Just his assuring me that the pain was real had a profound impact. There was even proof this disease existed. I wasn’t crazy! I felt hope again.

Unfortunately, I now know that it is one thing to have a diagnosis and another thing to find a doctor able to treat a disease that isn’t known to exist. Thoe few doctors who believe that my pain is real are faced with the challenge of how to treat it. I cannot travel to Boston and unfortunately, Dr. Rosenthal is no longer treating patients. Although drugs can take the edge off the pain, its side effects are intolerable.

There is no way to tell for sure how many people have this disease, but there is a whole group of people out there being missed by health professionals, just like I was. They need to be heard. They need to be validated, treated, and managed just like those with other diseases.

Dr. Rosenthal has made it his mission to make our cries heard. He has given me and many other victims of corneal neuralgia hope that this disease will become recognized by mainstream doctors and motivate researchers to develop treatments for me and my many fellow sufferers—before it is too late.

By Alicia Healy

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4 Responses to “Unrelenting, Agonizing Eye Pain: My Personal Battle with Corneal Neuralgia”

  1. what has given you relief? Are you using the lacosamide, blood serum, or anesthetic eye drops with or without sclerals? Scrambler therapy? I too suffer with this disease and have a story much like your own where opthamologists just write it off like it doesnt exist. I have had great progress with using blood serum drops in my scleral lenses. The improvement was almost immediate but i still have a long way to go and will probably come see Dr. Rosenthal myself at some point. I am a post lasik casualty and wish i had never done lasik. Thanks for any info you could provide and i wish you relief

    • Hi Teddy,

      I’m sorry to hear this. I also suffer permanent and debilitating post LASIK challenges. LASIK was a LIE from the start. Even Tiger Woods’ ex-girlfriend, Kashmira Karanjia, was RUINED by LASIK…yet Tiger continues to get paid $2 million yearly to tell the world how great it is knowing it is unpredictable… I could go on and on, but it’s all on my blogs: LifeAfterLasik and LasikAdvisory. The NUMBER ONE problem us, the injured, have is that not enough of us are speaking out, or reporting our doctors and bad outcomes to the medical groups and the FDA to be counted…Did you report your dissatisfaction or get a lawyer to sue your doctor? It’s tough to do…Good luck to you…

  2. I share in your pain Alicia. Your story is very similar to mine. I understand the stifled screams and the agony you suffer. Tracy Bean

  3. I think I might have something similar to what you have. I have constant pain that I describe a dry ice. My eyes feel dry, cold and they burn. I can’t hold my eyes open without blinking for more than five seconds. I was told by my doc that 10 seconds is normal and therefore, five seconds is not good at all.

    I’ve seen about five different doctors and none can seem to identify the problem. I was diagnosed with MGD, ocular rosacea, and the catch-all dry eye disease. I’ve tried preservative free eye drops, punctual plugs, eye gel, pred g ointment, erythromycin ointment four times a day, steroid drops, Restasis, warm compresses, etc.

    I was referred to UC Irvine and the doctor there seemed to agree that it was MGD. All the docs have seen some pitting on the cornea but they don’t think it’s severe enough to be causing the pain. I feel like they think I’m overreacting to the pain.

    I did receive a very low score on the last Schirmer test. The doc in Irvine wants me to do the blood serum and LipoFlo but I can’t afford that. I’d like to do it but I have a strong feeling that it won’t help.

    What’s weird is that my family doc seems to think I have peripheral neuropathy since I have carpal-tunnel-like pain in my right arm (I kinda think it’s carpal tunnel). Anyhow, I was wondering if PN had anything to do with dry-eye-like pain. That’s how I stumbled on your article.

    Another weird thing is that my brother has a very severe case of keratoconus. So bad that he’s had a corneal transplant and cross linking. Maybe there is no relation between the two conditions but I think it’s so odd that we both have severe problems with our eyes.

    I am desperate for answers. There are days I don’t even want to wake up in the morning because I know the pain is just waiting for me. The only time they feel better is when I have the warm compress on my eyes. But once i remove the compress the pain comes back within minutes.

    I know this was a loooong comment so thank you so much for reading it. Your article gives me some hope.

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