Tweet
I’ve read this forum for years, but I recently decided to join and share my story. I guess it’s because I’m living proof that you can survive and even thrive in spite of dry eye disease. It is a very long story, because it's been going on for almost 39 years. I hope I don't overstay my welcome.
During the summer of 1983, between my sophomore and junior years at college, I suddenly started having severe seasonal allergy symptoms. Prior to this I had never been allergic to anything. Looking back, it was possibly linked to exposure to mold and mildew after storing our household goods (including carpeting) in a damp basement the previous summer. Regardless of the trigger, I was a foolish 20 year old male so I decided to just take OTC allergy medication. But the decongestant would make my nose run, so I took another tablet, and so on. Soon I was taking 5-10 times the recommended dose and still suffering. My dry eye symptoms began a couple months after my allergy symptoms. So whether my dry eye disease was caused by mold, overdosing on antihistamines or bad luck, I am thrilled that neither of my children have inherited my curse. I continued my college career and received my BS in Computer and Electrical Engineering in four years, though my grades went into a steep decline during the last two years. I just couldn’t get up early and spend all day working on computers.
My first job out of college was at a GM forge plant. This was probably the worst place to work, as every surface was covered in fine steel particles and there were large fans everywhere to keep workers cool. I would miss a week at a time whenever the particles eroded my cornea. Always, always the left cornea. Fortunately I had the opportunity to change careers and acquire a restaurant franchise in 1990. I remained in the restaurant business for 20 years, and I now own a company that repairs circuit boards for restaurants. While I still spend a lot of time on computers, I can better control my environment and can work from home a couple days a week.
When I was first diagnosed, the only advice I received was to use artificial tears and ointments, scrub my eyelids with baby shampoo, and sleep with plastic wrap over my face. In the late 1980s I went to see a new ophthalmologist. He first tried silicone punctual plugs but I couldn’t tolerate them. He then cauterized all four of my puncta for the first time. Since then I've had the procedure done many more times. While it has indeed helped retain the moisture, I think it was a terrible decision. My eyes can no longer drain, so they are never flushed of pollen, debris, chemicals or any other irritants. It just builds up. I have had to switch to all preservative-free products and I have to rinse my eyes with saline and apply ointment several times a day because of the burning and foreign object sensations. After almost 40 years, the only artificial tear I can tolerate is Refresh Classic, because it appears to leave behind the least amount of solids after the water evaporates. I continue to try several every year but all feel goopy after a while.
Overall, I have been disappointed with the ophthalmologists that I’ve seen. Most look at my eyes and tell me to keep doing what I’m doing because there is very little corneal damage for such dry eyes. Or they tell me that I am lucky because other people are worse off than me. I had one who said I was just using artificial tears too often and that I should just wait longer. I tried Restasis several times but I never noticed any improvement. Xiidra has made a huge improvement in my tear production but I still have MGD and blepharitis, as well as that RCE at 10:00 on my left cornea. Oddly, my left eye tears to overflowing in the hours before lunch each day, but is always painful by dinner time. My right eye never seems to tear, but has always felt better than the left eye. And I constantly have stringy stuff in my left eye that is extremely uncomfortable and painful when it is over the cornea. The Internet says they could be “mucus strings” but why only in one eye?
I recently saw a new doctor and I'm just starting on autologous serum tears. He recommended a diamond burr procedure for the RCE but, frankly, it scares the hell out of me. I feel like I have been barely keeping it together all of these years. I dread trying anything new because I know that it is unlikely to get much better but it can always get worse. I'm not sure if I can use scleral lenses either. I've tried bandage lenses in the past but I couldn't keep them hydrated.
So that’s my story. I have literally been in pain for more than 13,000 days straight. I wake up multiple times at night to reapply drops, I have to lie in bed after waking up every morning to let my eyes hydrate, then I rinse them and apply ointment to start my day. They feel their best at around 9 or 10 each morning and go downhill throughout the day. At night I watch TV with one eye at a time or just listen while my wife describes what is going on. Then I rinse, lube and sleep with a moisture chamber. I have tried everything from adhesive patches to all of the Eye Eco products but have come back to plastic wrap. It’s the only thing that stays on my face overnight without becoming dislodged or poking me in the eye. But I wake up most mornings with all of the muscles in my face clenched tight, especially my eyes.
I am very fortunate to have a very understanding wife, because for 35 years, I haven’t wanted to do anything. If I think about a vacation, I think about how much it is going to hurt. Go to a movie? Then keep my eyes closed. But I have noticed that I look at pictures and remember the good times, not that my eyes were hurting at the time. I am also fortunate to have had a good career, because I spend an awful lot of money on non-prescription eye products.
You people are the only ones who understand what I am going through. I’m a great liar. I tell everyone that I am doing great, even when I’d rather be in bed. But you know what? In spite of everything, life is still worth living. It took me decades to conclude that a life with pain is still better than no life at all. I have had many bouts of depression over the years, and it horrifies me now to think of what I might have done during a dark period. I used to think that I didn’t want to live a life like this, but I’m glad I decided to power through it and live one.
--Dave
During the summer of 1983, between my sophomore and junior years at college, I suddenly started having severe seasonal allergy symptoms. Prior to this I had never been allergic to anything. Looking back, it was possibly linked to exposure to mold and mildew after storing our household goods (including carpeting) in a damp basement the previous summer. Regardless of the trigger, I was a foolish 20 year old male so I decided to just take OTC allergy medication. But the decongestant would make my nose run, so I took another tablet, and so on. Soon I was taking 5-10 times the recommended dose and still suffering. My dry eye symptoms began a couple months after my allergy symptoms. So whether my dry eye disease was caused by mold, overdosing on antihistamines or bad luck, I am thrilled that neither of my children have inherited my curse. I continued my college career and received my BS in Computer and Electrical Engineering in four years, though my grades went into a steep decline during the last two years. I just couldn’t get up early and spend all day working on computers.
My first job out of college was at a GM forge plant. This was probably the worst place to work, as every surface was covered in fine steel particles and there were large fans everywhere to keep workers cool. I would miss a week at a time whenever the particles eroded my cornea. Always, always the left cornea. Fortunately I had the opportunity to change careers and acquire a restaurant franchise in 1990. I remained in the restaurant business for 20 years, and I now own a company that repairs circuit boards for restaurants. While I still spend a lot of time on computers, I can better control my environment and can work from home a couple days a week.
When I was first diagnosed, the only advice I received was to use artificial tears and ointments, scrub my eyelids with baby shampoo, and sleep with plastic wrap over my face. In the late 1980s I went to see a new ophthalmologist. He first tried silicone punctual plugs but I couldn’t tolerate them. He then cauterized all four of my puncta for the first time. Since then I've had the procedure done many more times. While it has indeed helped retain the moisture, I think it was a terrible decision. My eyes can no longer drain, so they are never flushed of pollen, debris, chemicals or any other irritants. It just builds up. I have had to switch to all preservative-free products and I have to rinse my eyes with saline and apply ointment several times a day because of the burning and foreign object sensations. After almost 40 years, the only artificial tear I can tolerate is Refresh Classic, because it appears to leave behind the least amount of solids after the water evaporates. I continue to try several every year but all feel goopy after a while.
Overall, I have been disappointed with the ophthalmologists that I’ve seen. Most look at my eyes and tell me to keep doing what I’m doing because there is very little corneal damage for such dry eyes. Or they tell me that I am lucky because other people are worse off than me. I had one who said I was just using artificial tears too often and that I should just wait longer. I tried Restasis several times but I never noticed any improvement. Xiidra has made a huge improvement in my tear production but I still have MGD and blepharitis, as well as that RCE at 10:00 on my left cornea. Oddly, my left eye tears to overflowing in the hours before lunch each day, but is always painful by dinner time. My right eye never seems to tear, but has always felt better than the left eye. And I constantly have stringy stuff in my left eye that is extremely uncomfortable and painful when it is over the cornea. The Internet says they could be “mucus strings” but why only in one eye?
I recently saw a new doctor and I'm just starting on autologous serum tears. He recommended a diamond burr procedure for the RCE but, frankly, it scares the hell out of me. I feel like I have been barely keeping it together all of these years. I dread trying anything new because I know that it is unlikely to get much better but it can always get worse. I'm not sure if I can use scleral lenses either. I've tried bandage lenses in the past but I couldn't keep them hydrated.
So that’s my story. I have literally been in pain for more than 13,000 days straight. I wake up multiple times at night to reapply drops, I have to lie in bed after waking up every morning to let my eyes hydrate, then I rinse them and apply ointment to start my day. They feel their best at around 9 or 10 each morning and go downhill throughout the day. At night I watch TV with one eye at a time or just listen while my wife describes what is going on. Then I rinse, lube and sleep with a moisture chamber. I have tried everything from adhesive patches to all of the Eye Eco products but have come back to plastic wrap. It’s the only thing that stays on my face overnight without becoming dislodged or poking me in the eye. But I wake up most mornings with all of the muscles in my face clenched tight, especially my eyes.
I am very fortunate to have a very understanding wife, because for 35 years, I haven’t wanted to do anything. If I think about a vacation, I think about how much it is going to hurt. Go to a movie? Then keep my eyes closed. But I have noticed that I look at pictures and remember the good times, not that my eyes were hurting at the time. I am also fortunate to have had a good career, because I spend an awful lot of money on non-prescription eye products.
You people are the only ones who understand what I am going through. I’m a great liar. I tell everyone that I am doing great, even when I’d rather be in bed. But you know what? In spite of everything, life is still worth living. It took me decades to conclude that a life with pain is still better than no life at all. I have had many bouts of depression over the years, and it horrifies me now to think of what I might have done during a dark period. I used to think that I didn’t want to live a life like this, but I’m glad I decided to power through it and live one.
--Dave
Comment