Dealing with Chronic Dry Eye Pain with No Real Solutions

How my dry eye started

I first became aware that I had Dry Eye about 14 years ago, but I'm not exactly sure when it started, because I wasn't aware of the condition at the time. I thought I was just tired, or wasn't getting enough rest or was working too many hours. I guess I first really noticed it after a trip my husband and I took to Mexico. It was a long travel day with early flights, etc, awake for 22 hours the first day. I couldn't believe how red my eyes were after a day or two on this trip. When I look back at the pictures it is hard to believe! The pain was also what told me this was something different, and the fact that it was hard to keep my eyes open. They wanted to just be shut for relief.

Remembering all of the details that happened at first are a little blurry, but I do remember going to the eye doctor for some type of answer. I thought maybe I just needed some glasses! Well I was told that I had dry eye and was given some thoughts on how to help. The first suggestion was going on Restasis, because over the counter drops did not help, along with warm compresses periodically. This was a process that never really resulted in any true help for me. I had tried over the counter drops prior to this and got momentary relief. Restasis takes about 90 days to work according to the studies, so I was patient and figured that it would definitely help. I took this for about 2-3 years I think. I finally decided to keep track of my symptoms while on it, however. The doctors I went to just assumed that is should work and that maybe I wasn't taking it regularly. Eventually I noticed that while taking it regularly it gave me a foreign object in the eye sensation, or one of feeling like I had sand in my eye. I finally decided that it was not for me and that I had less pain when not taking it. Driving home from work with one eye closed at a time was not something I wanted to get used to. The pain was often unbearable with the muscles all around my eyes getting extremely tired. It sometimes feels like I have been punched in the eye sockets. I just can't keep my eye lids open without pain. They are still like this today in that respect.

How it progressed and what I did

This condition kept getting worse. I found that if I didn't get at least 8 hours of "shut eye", I was going to have a miserable day. And to top things off I work on a computer all day. So I went to an actual specialist searching for more answers. I had that special scan done that looks at your oil glands and was told that I already had partial fallout of my glands, meaning that that only about half of them were working correctly. So not only do I not produce enough tears, but I do not have the correct amount of oil to keep the tears on the surface of my cornea. They told me my case was quite severe and that there was no real cure, just several things we could try to help make it bearable. Since Restasis did not work, I tried the new drug Xiidra. That was like putting acid into my eye if you hadn't told me it was a medicine! Tried for about two weeks and couldn't bear it any longer. They also put me on a low dose of doxycycline to help reduce the inflammation in my eyes. I also had tried punctal eye plugs and they seemed to be the first thing that brought me some relief. They helped to keep my tears from draining away! The only problem is, that I am unable to keep them in my ducts for any length of time. They are always falling out. When all of these things still weren't working (even tried some expensive machine--Lipiflow--that heats up your oil ducts to help get the oil flowing), my doctor suggested putting upper plugs in as well as the lower. I wondered why this hadn't been suggested already, and was told it is a condition that you just keep adding one solution at a time. The double plugs were a total relief about four years ago. But again, they never stay in. Along with the plugs I try to use a heated eye mask for relief when it is practical and to lay down for about 1/2 hour after work to close my eyes. This really helps!

Doctor had also suggested that we try serum eye drops, which are made from your own blood. This is because we determined that my eyes are ultra sensitive to any foreign drops going in my eye. I would have been willing to try this, but the process is pretty expensive and I would have to drive a distance to the facility that does this type of procedure. It all added up to a No for me. The drops also don't last very long if you are not using them on a regular basis.

So after about two and a half years of going to this specialist, I finally just accepted that the double plugs were about the only thing that helped. And I wasn't really satisfied with the physician. It didn't seem like my condition was one that she was enthusiastic about treating, because there is no real cure that she could give me. I currently just see my local doctor to have my punctual plugs put in when they fall out.

The hardest part

My dry eye story continues as I search for relief. My eyes are seeming to get worse. I have some good days (mostly in the humid summer), and a lot of bad days where I can't watch TV at night. I seldom read books anymore because it hurts so bad and I don't want to "waste" my good hours. I am now finding that my eyeballs stick to my eyelids when I sleep. It takes me quite awhile to get my eyes "juicy" enough in the morning to get out of bed and function properly. I even tore layers off my outer corneal layer this past year due to the dryness from sleeping. I was in so much pain and had no idea why until my eye doctor saw the tears on a basic eye exam.

My husband sympathizes with my condition, as do my parents. I often feel like it is hard to explain the situation to my co-workers though, so I just struggle through my days sometimes. This is the hardest part, just trying to get through the day and not being able to use my eyes on a continual pain-free basis.

Turning a corner

I am still searching for solutions. I am going to try and go to a different specialist to see if there is perhaps another diagnosis I may have that can be helped. I have had trouble getting an appointment though with backlogged patients. I am thinking of having my tear ducts permanently cauterized, but want to look into this a bit more.

I would love to find a job that didn't require so much computer time, but not really sure what that would be! I also don't feel like I could do a job that required work much after 5:00 because of the pain I am usually in by then.

Where I’m at now

I am a pretty positive person, but this condition has definitely been trying. At times it is a lifestyle adjustment that I am just not ready to accept. I want to be active and do the things I always used to do. And I hate to have my kids see that Mom is always "eye tired". To anyone that is just starting this process, I guess having patience is a big key. There is no immediate answer or relief solution, as everyone is different. Just know all of the components of the disease when you go into it and hope for one of the remedies to bring some relief!! And I continually hope for new medical solutions.

Dawn

Massachusetts South Shore