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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 wasn’t all that much sympathetic because I looked fine from the outside.
I went to a rheumatologist and had a full workup for lupus, Sjogren’s, 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 Cogan’s 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 “inside out”. 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. I’ve 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 I’m crying. People don’t 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 “bad” eye is my left eye and I guess doesn’t 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 wouldn’t fall out.
Finally, in desperation, I Googled “Problems with punctal plugs” 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 can’t 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 can’t remember the last time I had a full night’s sleep. Even if my cornea doesn’t erode, I wake up because I’m so afraid it will. I can’t remember the last time I slept in my bed with my husband. I sleep on the sofa so I don’t disturb him all night. I have to keep getting up to put more ointment in. I’ve tried a humidifier and it didn’t 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
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 wasn’t all that much sympathetic because I looked fine from the outside.
I went to a rheumatologist and had a full workup for lupus, Sjogren’s, 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 Cogan’s 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 “inside out”. 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. I’ve 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 I’m crying. People don’t 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 “bad” eye is my left eye and I guess doesn’t 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 wouldn’t fall out.
Finally, in desperation, I Googled “Problems with punctal plugs” 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 can’t 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 can’t remember the last time I had a full night’s sleep. Even if my cornea doesn’t erode, I wake up because I’m so afraid it will. I can’t remember the last time I slept in my bed with my husband. I sleep on the sofa so I don’t disturb him all night. I have to keep getting up to put more ointment in. I’ve tried a humidifier and it didn’t 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
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