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    Old 01-11-2006, 07:36 AM   #16
    lwmom360
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    Re: Recurrent Corneal Erosion

    Thanks for the reply Mike.
    After reading many of the posts here, last night during an erosion I didn't open my eye. I squeezed in some genteal gel and kept my eye closed and it did help. It wasn't nearly as painful.
    I went to bed around 8:30 (after a week of this I am totally exhausted) I woke up around 1130 and put in some muro oint. to hopefully prevent an erosion but it didn't work. Around 3:00am I woke to one. It lasted around 30 min. I put in some Genteal gel and finally went back to sleep and then had another one about an hr later. This time I managed to fall back asleep while trying to keep my eye closed and then woke fine.
    It sounds like mine is kinda different than ya'lls. I never have one upon wakening. Mine is always while I'm asleep it just happens out of nowhere. I have never had one when I'm waking up. Also, other than two days last week my eyes have never been matted up.
    As for the comparrison between this and childbirth, It's kinda hard to say. I would deffinately choose childbirth over this but I'm not sure if it's because childbirth is over and done with and you have this little bundle of joy to love and you forget about your pain (eventually) or if it's because this is so recurent you don't have time to forget about the pain and there is no reward . And with childbirth you have meds for pain and with this there isn't much you can do with pain.
    Why do you say you shouldn't sleep on your back? That is my most favorable position. I do switch between my side and back though.
    Thanks, Gena

     
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    Old 01-11-2006, 08:09 AM   #17
    Sheila49
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    Re: Recurrent Corneal Erosion

    I thought I would also throw a couple of suggestions out to whoever might want to try them. It has been about a year now since I have had any major erosions, with just minor ones occurring here and there since so maybe my eyes were healing anyway but still they never felt "normal". I thought the Muro was irritating my eyes but didn't know what else to use to keep them lubricated. A couple weeks ago I bought some eye masks that are filled with some kind of granules, so you can either heat them in the microwave or keep them in the freezer. I started putting them in the freezer and about 3-4 times a day I would put them over my eyes for about 10 mins, at night I will go to bed with them on my eyes and maybe once during the night when I wake up use one. They have helped considerably with keeping my eyes moistened, if at night they start to feel irritated I put them on. I am not sure if the cold is contracting and shrinking the eye or cornea or what but it seems to do the same thing the Muro was without the irritation. Also, during the day I put a very thin layer of vaseline on my top lids along the lash line. Again, I don't know if it warms and keeps my eye lubricated or what but it also seems to keep my eyes from feeling so dry and irritated, I don't put it in my eye, just along the lid. The only other thing I do is also wake up with my eyes closed and apply drops first thing, whether I wake up during the night or in the morning. It really is possible to learn to wake up with your eyes closed, try to also keep them still and relaxed under your lids until you get them lubricated with the drops.

    Since doing these steps I have stopped using the Muro and my eyes feel better than they have for months. I realize this may not work for everyone but isn't that how we all learned what does and doesn't work, by trying different methods. If it can help even one other person then I will be glad I wrote.

    Best of luck to everyone, Sheila

     
    Old 01-11-2006, 08:13 AM   #18
    mike1961
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    Re: Recurrent Corneal Erosion

    LWMom - the back is the worst position and it's almost a certainty that erosions will be more frequent. I strongly believe that you (like I used to be) are so used to just awakening and opening your eyes so fast that you don't realize it's the action of opening your eyes causing the erosion and not the actual wakeing up. Right now the two are practically synonymous to you and you probably just pop your eyes open so fast that you don't think about it. Many others on this board thought the same thing that they just wake up to it. It's movement of the eyes that causes it. I'd strongly suggest making a real effort to awaken with your eyes as relaxed and still as possible and you will be amazed. You will start to awaken with your eyes closed, add the drops and not have an erosion.

    Keep us posted,
    Mike

     
    Old 01-11-2006, 08:14 AM   #19
    Sheila49
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    Re: Recurrent Corneal Erosion

    To IWMom360,
    One of the things that I think made the biggest difference for me to stop the erosions was that I would get up half way through the night and sleep in my recliner chair. I still do this and feel it takes pressure off my eye during the night to sit up. I know it seems like a lot of trouble to do all these things but as you know, anything is better than dealing with erosions.

    Good luck, Sheila

     
    Old 01-11-2006, 08:55 AM   #20
    mike1961
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    Re: Recurrent Corneal Erosion

    Sheila - I realize you are not putting the vaseline directly in your eyes which is a good thing because I just wanted to point out that I remember reading somewhere that putting it directly in the eyes can clog the pores of the eye.

    LwMom - sleeping on the back is the absolute worst position. Sometimes I do like to doze off on my back so here's a trick...just be sure to tilt your head to one side and keep it there (I usually have one leg bent which makes it easy for me to keep my head to one side). Do not look straight up at the ceiling as you are sleeping. It may take time to learn to keep your head so still and not move as you sleep and many may not even be able to do this. So, for now, if you can, I would suggest just sleeping on your side and stay off your back. It takes time to learn to gain this kind of control over your body as you sleep but you'd be amazed at just how fast you can learn this if you make a conscious effort. But, stay off your back. RCES takes a long time to heal because you can easily be erosion free for 3-6 months think you are healed and one time on the back can easily set this thing off again. But, as you heal keep in mind minor erosions don't set you back as far as major ones do so as you heal the erosions will occur less often and with less intensity.

    Ironically - when you do get an erosion, relaxing for 15 min with your eyes closed and adding artificial tears as needed, laying on your back looking straight up at the ceiling is the BEST position to be in to minimize the degree of the erosion. After an erosion, do not blink...just try to lay flat on your back, keep your eyes closed and relaxed and artificial tears as needed for pain (do this for up to about 15 min). Consider warming ointment around 15-30 min after the erosion before starting the day.

    Are you warming the Muro ointment before applying it?

    Keep us posted,
    Mike

    Last edited by mike1961; 01-11-2006 at 08:59 AM.

     
    Old 01-11-2006, 11:02 AM   #21
    lwmom360
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    Re: Recurrent Corneal Erosion

    Thanks again for the replies Mike and Sheila.
    Mike, no up until today I was not warming anything. It does def. feel better. Do the Muro drops burn everyone else. They kill me. The ointment doesn't just the drops. I will go to the drugstore and get some kind of artificial tears today.
    Is this the same thing as dry eye?
    Gena

     
    Old 01-11-2006, 11:18 AM   #22
    mike1961
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    Re: Recurrent Corneal Erosion

    LWMom - A lot of people here do just fine without Muro drops. I'd say just use the ointment at night and consider using the ointment during the day when your eyes are bothering you; always warm the ointment.

    I love Refresh tears and always put them in when I awaken in the morning. Once in a while I use Tears II during the day because they have Dextran in them which is supposed to be very good but these days I rarely need anything during the day. I just use some ointment at night and drops in the morning.

    RCES is not the same as dry eye syndrome. Frankly, I think in some cases people with RCES sleep with their eyes slightly open which causes one's eyes to really dry out during the night then any movement in the morning feels like it just rips the cornea to shreds...The remedy of course is to just learn to wake up eyes closed still and relaxed and add artificial tears.

    As you heal, your epithelium will thicken and become much more resilient to erosions than it is now. A lot of people with RCES are not aware that when they get an erosion, the surrounding cells "fill in the gap" but the epithelium is now thinner than it was before. This also explains why major erosions set one back further than minor ones. It also explains why the longer you go without an erosion the less likely you are to get another major one before any minor ones (because the epithelium has "built up" and is thicker). It takes time but the epithelium will thicken as you continue to avoid erosions.

    Mike

    Last edited by mike1961; 01-11-2006 at 11:24 AM.

     
    Old 01-11-2006, 11:25 AM   #23
    lwmom360
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    Re: Recurrent Corneal Erosion

    thanks Mike,
    One more thing, I read in one post that said you shouldn't combine somethiing with muro ointment but I can't find it now. Do you know? Also, in your post to Sheila about petroleum jelly clogging your eye pores, should we stay away from any ointments that contain it or mineral oil?
    Gena

     
    Old 01-11-2006, 12:04 PM   #24
    JaneNY
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    Re: Recurrent Corneal Erosion

    Still erosion free since August, but needing to be careful - my eye has felt a little 'pick'-y of late, so reading all the discussion is a helpful pep-talk to continue to be careful.. Shilpabhavani, I'm so happy to hear you are better - I remember when you first posted and were suffering so bad.

    I wanted to corroborate Mike's advice to avoid sleeping on your back - that's when I got the most erosions I think. One problem for me, is when I'm sleeping in a warm environment, I find I roll on to my back, even though I never start out on my back, so one key for me is to keep my room very cool. This will be harder to do in the spring and summer. So summer will be the true test for me and I'll have to take extra steps to be sure I stay on my side.

    For those newer people, you CAN improve your condition. Follow Mike's suggestions - they really have worked for me. He has helped so many of us on here and I will always remember with gratitude.

     
    Old 01-11-2006, 12:09 PM   #25
    mike1961
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    Re: Recurrent Corneal Erosion

    LWMom - I don't recall the post about not combining something with Muro ointment so I can't think of what that would have been about.

    Regarding the vaseline, I'm simply saying that it is not an ophthalmic ointment and neither is mineral oil. It's fine to use them (on the skin) just don't put them in your eye.

    One more thing, I'd advise against any eye pressure test for at least a year in either eye until you get the RCES under control. Usually the doc likes to do the test as part of the standard annual eye exam for glaucoma, but if they insist on one I'd strongly suggest a second opinion (perhaps with a corneal specialist) because it could set off RCES in both eyes and could also disturb the healing process; don't do it. When awakening with your eyes closed be sure to add a LOT of artificial tears. You can't add too many drops - just soak your eyes with artificial tears and then slowly and gently open them. Be sure the tip of the bottle is not over your eyelids but gently touches the corner of your eye and let gravity work the tears across the eye (you want lots of tears to go in the eye and not over the eyelid). Keep us posted...we're rootin' for you.

    Mike

     
    Old 01-11-2006, 12:12 PM   #26
    mike1961
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    Re: Recurrent Corneal Erosion

    Jane - when your eyes feel 'pick'-y during the day do you warm ointment and apply it during the day? A lot of people think it's only for the night but you can use it during the day and it lubricates the eyes for hours whereas artificial tears only last a few minutes. Do you use Muro 128? Consider warming it and applying it during the day when your eyes feel that way.

    Best to you,
    Mike

     
    Old 01-13-2006, 06:50 AM   #27
    lwmom360
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    Re: Recurrent Corneal Erosion

    no erosion for the last two nights! Several times while stretching during the night I was afraid I was going to have one but didn't. I know I have along way to go but it's a start. Sure beats having one every night.
    Just curious if anyone out there has ever had eye problems such as pinkeye or styes etc. How does that affect the eye with erosions?
    I can't believe I went so long (5 or 6 months) without any erosions and then start having them again so regularly. I just wonder if it was the antibiotic ointment that I used or if I might have been getting pinkeye. ( I am a daycare provider for 10 or 12 kids during the day and one had been waking up with eyes matted together and was being treated for pinkeye). Probably never know.
    Anyway, everyone have a good day.

     
    Old 01-13-2006, 11:22 AM   #28
    anna2lia
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    Re: Recurrent Corneal Erosion

    lwmom360 - Haven't posted anything here in a while but I am always lurking around and reading almost all of the posts. Just wanted to tell you that my erosions started because of a bout with pinkeye. I discovered after 3 doctors in as many days that I already had epithelial basement membrane dystrophy and the trauma to my eye from the pink eye infection sent me over the edge and sped up the process. I am doing great now! Almost 7 months with no erosions. I would be willing to put money on the fact that the antibiotic drops had something to do with starting the erosions. I asked all of the docs about it and they said "impossible" but I just don't think I agree. My eyes would feel fine until I put the drops in and then they would start to feel "picky" as others have described. It really got bad when I switched from an antibiotic eye drop to an antibiotic ointment. Glad to know someone else out there has the same intuition. Everyone thought I was crazy. Mike- I thought it was interesting that you made mention of the antibiotic drops thinning out the epithelium. Maybe we should all get "honorary" eye doc diplomas. I think we know more than they do sometimes.

    Also wanted to mention lwmom that the doxycycline/prednisone treatment worked a miracle for me and stopped the cycle dead in its tracks!!!! You may want to discuss that with your doc. If he/she won't agree-seek a second opinion. It saved me and my family from total misery!!!! Remember -these are YOUR eyes and you feel the pain (your family some too) so don't let eye docs push you around or treat you as if this is nothing. How would they feel to wake up in the middle of the night with the feeling that someone has just sliced you eyeball with a razor blade??????????????????? Night after Night after Night????????????

    Prayers for all,
    anna2lia

     
    Old 01-13-2006, 12:22 PM   #29
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    Re: Recurrent Corneal Erosion

    Yes you are right that the doxycycline/prednisone is one of two treatments without surgery that seems to do wonders....if you can get a doctor to prescribe the steroid.....they never blink when you ask for doxy but prednisone? We all know it can increase eye pressure even if it is only presribed for two weeks and it's certainly not good for the doc to test our initial pressure given our condition. I think LWMom should first really try my other suggestions. Personally, I think if she follows through she will do very well. Otherwise, she could start a doxy treatment for two months (only risks being a yeast infection).

    Of course the other treatment medically is the Dehydrex drops but I don't think she's going to find a doctor nearby to contact the lab since she said the nearest one is two hours away. And even though the drops appear to be totally safe, many doctors seem to hesitate doing experimental things that are not FDA approved yet. After that, there is of course PTK but again, I'm hopeful that she will do well from the initial advice.

    I think one thing she may not be aware of is that she said in her initial post that the RCES kept coming back every 3-6 months or so. At the time, she probably wasn't aware that it had never healed. RCES is so tricky for newbies. They (like me) think that you get an erosion and then 3-7 days later when the pain is gone, you are healed and done only to be surprised when it reoccurs (thus the name RCES). But, that's the trick of RCES...it's a syndrome and it's all about management of the epithelium and making sure it does not "thin out" too much or you will feel massive pain. When one gets an erosion, the surrounding cells fill in the gap and the epithelium is now thinner and more sensitive and more prone to erosion. So, the major erosions have larger gaps to fill in and cause the epithelium to thin out more (setting you back further) than the minor ones. It takes at least a year to heal but the process can always reverse (where the epithelium starts to thin out again and minor erosions start to become major) if one is not attentative.

    Best to all,
    Mike

     
    Old 01-13-2006, 07:26 PM   #30
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    Re: Recurrent Corneal Erosion

    LWMom - almost forgot while you are learning to wake up with your eyes closed and relaxed...consider turning the phone ringer in your bedroom off and just have it on in another room. You don't want to be startled awake to a loud ring and pop your eyes open to an erosion. Chances are high that after a major erosion such as yours, you will awaken some time within the next two weeks (possibly several) and your eyes will feel cemented shut. This will probably happen several times over the next year but fear not...experience what the feeling is like for a few seconds and then just gently apply the drops and gently open them as they feel smooth as silk.

    Mike

     
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