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My Nightmare

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  • My Nightmare

    I am new to this board and am so inspired by all of you, that I wanted to share my story. I'm sorry that it is so long

    My nightmare started in 1994. I would wake up in the middle of the night with excruciating pain in my eye and what seemed like a water faucet was turned on in my eye. A trip to the eye doctor told me that I had a corneal erosion. He patched the eye and told me to go home and sleep. This started happening every couple of weeks, then a couple of times a week. Eventually it started in my other eye, so they would take turns. I lived like a vampire, in almost complete darkness. My employer wasnít all that much sympathetic because I looked fine from the outside.

    I went to a rheumatologist and had a full workup for lupus, Sjogrenís, including a biopsy on my salivary gland, all were negative. I went on to see an immunologist, who referred me to a corneal specialist.

    He diagnosed me with Coganís dystrophy. He said my eyes were so dry that the cornea just broke down in my sleep and advised me to use Muro 128 ointment at bedtime. I did as I was told, and my corneas kept eroding. I had a stromal puncture, (about a hundred holes poked in my cornea), to allow the cornea to heal from the ďinside outĒ. That is one procedure I will never have again. My cornea started eroding again within a week. This has been going on and on with no end in sight, (no pun intended)!

    The vision in my left eye is blurred all the time from scarring of the cornea. I am afraid that I will end up blind one day. Iíve tried numerous drops and ointments. I now use Genteal gel at bedtime and several different drops during the day. I hated going out in public because my eyes would tear so much that think Iím crying. People donít understand why dry eyes water so much. I finally had plugs put in about two weeks ago. First of all, the procedure was painful. My ďbadĒ eye is my left eye and I guess doesnít get numb because I felt everything. I thought it would be a small price to pay for relief, though. Well, before I left the office I told my doctor that I felt something sticking me in the eye. He checked and said there was nothing there, that the plugs were in place. I went home and was in agony for two days. Everytime I moved my eyes I felt the plugs sticking me. He never told me that would happen. I tried to rub them out, to over lubricate them with the ointment, they wouldnít fall out.

    Finally, in desperation, I Googled ďProblems with punctal plugsĒ and this site came up. I was up most of the night reading story after story. I just want you guys to know that I feel like you saved my life. I was at such a low point, and just knowing that there are other people out there going through this horrible ordeal made me feel so much better to know that I was not alone. I have learned so much from this board. I canít wait to order a pair of Tranquil eyes. I sleep with a wet washcloth on my eyes under a sleep mask. I end up holding it in place most of the night because it moves. My doctor told me that the wet washcloth was doing more harm then good, but it helps me. One of the plugs fell out after six days, the other is still in. My eyes did calm down, as I read on the board, that they would. Even so, the eye that has the plug in, the cornea eroded three times in one night.

    I canít remember the last time I had a full nightís sleep. Even if my cornea doesnít erode, I wake up because Iím so afraid it will. I canít remember the last time I slept in my bed with my husband. I sleep on the sofa so I donít disturb him all night. I have to keep getting up to put more ointment in. Iíve tried a humidifier and it didnít help. I just wanted to tell my story and to thank each one of you for telling yours. You might not know it, but you really made a difference in my life. Thank you to each one of you

  • #2
    Hi, Lynn.

    Dear Lynn,

    I am new to this board, too, and I, too, have Cogan's / map-dot-fingerprint / epithelial basement membrane / anterior basement membrane dystrophy. I just found out about it on June 20, 2007. And, like you, I found out about it due to rce's. It is terrible, and you have empathy from me.

    Cindy's posts have really helped me a lot.

    I hope that you find relief and the right drops and methods that work best for you.



    • #3
      Hi Liz

      Hi Liz,

      Thank you so much for taking the time to answer me. It means so much to know some who understands exactly what I am going through. I have a wonderful, sympathetic husband and family, but no one really knows unless you experience it. Thanks also for forwarding the posts from Cindy. It helped me so much to read them. I never thought about the glass of water to wet my eyes. I sleep with a wet washcloth over my eyes and get up a few times a night to re-wet it, but the glass of water is much easier. It would be nice to be able to sleep through the night again without waking up to put drops or ointment in, wouldn't it?

      I, too, am on the computer a lot. I work as a medical transcriptionist, and try to blink a lot, use rewetting drops many times a day, but nothing helps. My biggest problem right now is the blurry vision. My cornea is so badly scarred in my left eye, that it's always blurry. As a result of that, I get really bad headaches. Do you also experience this?

      Well, I just wanted to thank you from the bottom of my heart. This entire board has helped me in so many ways. I can't believe it took me years to find it. I hope you are feeling better.



      • #4
        Hi, Lynn.

        I'm glad that you found some help in the posts. Rebecca does a great job here of providing helpful resources and an upbeat attitude, so the board seems to attract really caring and sympathetic people.

        When my erosions were really bad in June, I was getting headaches from blurred vision. However, since I have been controlling them better, my vision is back to normal, and the headaches are not a problem anymore. I'm sorry that you have experienced the problems for so long and that you experienced scarring. I hope that you can find things that work for you that will better manage the condition. I guess we are in an on-going project here.


        • #5
          Welcome. I know exactly how you feel. I went through a period where I had corneal erosions and they are extremely painful. They have calmed down quite a bit, but still, everyday is a new adventure.

          Yesterday I went shopping and just being in the stores drove my eyes nuts! My left one felt like there was something in it and I kept putting eye drops in it. By the end of the day, my eyes were all red. Everyone at the mall probably thought I was stoned!

          I also know what you mean about getting a full nights sleep. I wake up at least twice and have to put drops in my eyes. This has been going on for about 2 years.

          It is nice to have this board to read and see "we aren't the only ones!" They say millions of people have dry eyes, but I haven't met one person that has the problems I have. It's hard to explain to someone that hasn't gone through it. Every day is a different pain or sensation. That's why I like reading this board.

          Anyway, hope you get some help with the suggestions and all the good information Rebecca has put on this website. She really is good and informative.


          • #6
            Bad day

            Thanks Darviets,

            It is so nice to talk to someone who understands exactly how you feel. Today was a very bad day for me. My second plug fell out on Saturday and last night my cornea eroded over and over. I couldn't get it to stop. I've had two or three erosions in one night before, but this was the worst ever. I don't know how people can go on like this. I'm so tired of this ruling my life Thanks for listening. It means alot.



            • #7
              Originally posted by Lynn1016
              Thanks Darviets,

              It is so nice to talk to someone who understands exactly how you feel. Today was a very bad day for me. My second plug fell out on Saturday and last night my cornea eroded over and over. I couldn't get it to stop. I've had two or three erosions in one night before, but this was the worst ever. I don't know how people can go on like this. I'm so tired of this ruling my life Thanks for listening. It means alot.

              Lynn, I'm sorry to hear that you are still having a really hard time. This has been affecting your life for so long, and it must be so very frustrating.

              I don't know if you have read any of Dr. Holly's articles, but this one, called "Vitamins and Polymers in the Treatment of Ocular Disease" has been really helpful to me. It explains in the best way that I have found the difference between people who suffer from rce's because of dry eye and those whose ebmd cause dry conditions, due to the unevenness of the cornea. Such a difference, he points out, should have a bearing on how treatment should proceed. (Of course, it is possible that people can have both problems together.) He also explains how his drops work. I cannot begin to tell you how being patient and using these drops regularly has helped me.

              I'm certainly no doctor, and I am very new to this condition, but it seems to make sense to me that solving a chemical problem (enzyme deficiency) with drops would work more so than would a mechanical solution with scraping, laser, or puncturing.

              I hope that whatever you choose to do to alleviate this problem works for you.
              Last edited by liz56; 09-Aug-2007, 07:52.