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    Old 01-15-2006, 04:40 PM   #31
    lwmom360
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    Re: Recurrent Corneal Erosion

    Well, it's been another two nights without an erosion (4 total). Should I continue to use the muro nightly before bed and also during the night if I wake up? As I had said before after I had an erosion I would use it nightly for 3 or 4 nights and then gradually decrease like every other night to then every 3 or 4 days and kinda continue that pattern. It had been 5 or 6 months since an erosion until the pinkeye problem. So now should I go back to my original schedule or do you recommend using it nightly regardless?
    Also, my eye doesn't bother me at all during the day. The only time it does is after a major erosion but otherwise it's fine. I even went to a monster truck shos last night and with all the fumes and dirt my husband was afraid I would have a bad night but I had no problems.
    gena

     
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    Old 01-15-2006, 04:46 PM   #32
    lwmom360
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    Re: Recurrent Corneal Erosion

    Well, it's been another two nights without an erosion (4 total). Should I continue to use the muro nightly before bed and also during the night if I wake up? As I had said before after I had an erosion I would use it nightly for 3 or 4 nights and then gradually decrease like every other night to then every 3 or 4 days and kinda continue that pattern. It had been 5 or 6 months since an erosion until the pinkeye problem. So now should I go back to my original schedule or do you recommend using it nightly regardless?
    Also, my eye doesn't bother me at all during the day. The only time it does is after a major erosion but otherwise it's fine. I even went to a monster truck shos last night and with all the fumes and dirt my husband was afraid I would have a bad night but I had no problems.
    gena

     
    Old 01-15-2006, 09:49 PM   #33
    mike1961
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    Re: Recurrent Corneal Erosion

    LWMom - You can not overdose on Muro 128. I've been using it for 18 months. You said before that you would slowly go off it and eventually get another erosion. If I were you, I'd continue to use it but it's up to you. Keep in mind that you are not in any way "healed." It takes the epithelium a long time to "thicken up" again. Either way, I would most certainly, try to wake up eyes closed, still and relaxed and add drops before opening my eyes....have you had any luck with that? You say you have been erosion free for around 4 nights now....what would you say has helped to stop the cycle since at the time of your post you were getting them nightly and even twice nightly? Glad to hear that things are getting better.

    Mike

     
    Old 01-16-2006, 06:42 AM   #34
    lwmom360
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    Re: Recurrent Corneal Erosion

    I don't know what has helped the most. Since my erosions started 4 years ago this is the worst episode that I have had. Normally I would only have one every two or 3 weeks at the most. For the last year I guess I have been waking up with my eyes closed just because I was afraid that was what was causing the erosions. But I still say that mine come out of nowhere when I'm asleep. Unless I'm dreaming or something and do actually open my eyes when I'm asleep and that's what causing them but I don't realize that I'm opening my eyes. If that's the case I don't see how I can overcome that. I have been putting tearsII in my eyes in the morning just to be on the safe side.
    I did have a very minor erosion last night but it was over pretty quick with very little pain or tearing.
    Gena

     
    Old 01-16-2006, 10:02 AM   #35
    mike1961
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    Re: Recurrent Corneal Erosion

    LWMom - I think one of the best ways to overcome not realizing you are opening your eyes and having more control over when you open your eyes is to sleep on your side and stay off your back. Otherwise, if you must sleep on your back be sure to keep your head tilted to one side.

    Glad to hear things are getting better,
    Mike

     
    Old 01-17-2006, 05:31 AM   #36
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    Re: Recurrent Corneal Erosion

    Quote:
    Originally Posted by lwmom360
    Well, it's been another two nights without an erosion (4 total). Should I continue to use the muro nightly before bed and also during the night if I wake up? As I had said before after I had an erosion I would use it nightly for 3 or 4 nights and then gradually decrease like every other night to then every 3 or 4 days and kinda continue that pattern. It had been 5 or 6 months since an erosion until the pinkeye problem. So now should I go back to my original schedule or do you recommend using it nightly regardless?
    There has not been a night that I didn't use muro ointment, since July 2004 when I got my first erosion. I've been erosion free since mid August now, but I continue to use warmed Muro every single night. About 6 weeks ago I was able to stop setting my alarm for 3am, so I at THIS point I don't need to add extra muro in the middle of the night, but I continue to use Muro before bed. I still wake sometimes with my eyes feeling stuck shut and use refresh drops before opening my eyes, but unless a really long time elapses (more than a year) with no erosion, and no sensation of eyes feeling stuck shut, I don't think I would ever stop using warmed muro before bed, and even then I might not.

     
    Old 01-17-2006, 07:36 AM   #37
    lwmom360
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    Re: Recurrent Corneal Erosion

    I think that I will continue to use Muro everynight also. I was doing pretty good even though I wasn't using it nightly so by using nightly I might even do great! It's such a small price to pay if it can prevent an erosion. Shoot, I think if it was a major expense it would be worth it!
    Gena

     
    Old 01-17-2006, 08:21 AM   #38
    mike1961
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    Re: Recurrent Corneal Erosion

    LWMom - Right...the expense is really the pain and lost enjoyment out of life and lost time from work. But, if after a year or two you DO decide to discontinue or "wean" yourself off of it...I would not "cold turkey" every other night or every few nights. Rather, just consider using a little less of it each night (say from 1/2 inch to say 7/16, then 6/16, then 5/16, etc...). But, for me, it's been 18 months and I find I use about 1/4 inch, have no thoughts about discontinuing at this time and the stuff just lasts forever. Also, I think the time of year (spring, summer, etc) and the weather have something to do with it also. We have a syndrome and the key is management rather than being overly worried about being dependent on an ointment and on artificial tears upon awakening. Best to you,

    Mike

    Last edited by mike1961; 01-17-2006 at 08:23 AM.

     
    Old 01-18-2006, 07:33 AM   #39
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    Re: Recurrent Corneal Erosion

    All,
    I had my annual physical from my Internist yesterday. We talked alot about the RCE, and he agrees with me that, given that I have gained some control over it, considering PTK or other invasive measures is not recommended. He did give me one suggestion. He thinks my eye is coming open (slightly) while I sleep. He observed that that my left eye does not close very well - this came about due to the auto accident 2001- I suffered paralysis in that part of my face for several weeks after the accident. He thinks I should tape - patch my eye each night to make sure that it stays closed.

    He showed me how to make a patch out of gauze and I tried it last night. It did not stay securely fastened last night - it became somehwat loose - not tight enough to keep my eyelid in place. Tonight, I will apply more tape and secure it much more and try again. I notice that using the gauze patch - I can still use artificial tears - with gravity, the tears roll into the corner of my eye. It will be interesting to test his theory about my eye opening when I sleep.

    I send you all best wishes,
    Janet

     
    Old 01-18-2006, 10:54 AM   #40
    mike1961
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    Re: Recurrent Corneal Erosion

    Janet - I think the problem with tape aside from the fact that it does not always work to keep the eyes closed is that it may irritate the skin around the eyes. I think the best methods I have heard of from others on this board and from what I have read are either an eye mask or celluvisc (I think I spelled that right). I think what I read said the celluvisc can get kind of "grimy / sticky" in the night which actually helps to keep the eyelids stuck together thus helping to keep the eyes closed. Then adding drops in the morning again helps to lubricate everything. It's true that many of us may sleep with our eyes slightly open which can make RCES worse. However, I believe that applying an ointment at night and artificial tears in the morning before moving one's eyes should be enough to avoid erosions anyway (for most cases). Also, I believe how one sleeps (ie: not on their back) can minimize how much one opens their eyes. Glad to hear things are for the most part under control.

    Mike

     
    Old 01-18-2006, 04:49 PM   #41
    TerriD
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    Re: Recurrent Corneal Erosion

    Hello all.
    I've been reading this thread with great interest.

    I have been experiencing RCE for the past couple of years, alternating in each eye.
    One of my problems is that when I awaken ( and I do this during the night as well as in the morning) I "throw" my eyes open so quickly, which seems to encourage erosions.

    Anyway, I've been reading this thread and have been following Mike's advice on here. The only thing I can't seem to do, is condition myself to keep my eyes closed when I awaken, so I found something that has worked for me, and that is wearing a sleep mask to bed each night.
    I got one at Walmart and have been wearing it the past 3 weeks.
    I had a very slight erosion in my left eye last week, but I believe having that slight pressure on my eyes, served as a reminder for me not to open them all the way.
    I was able to close them as soon as I realized what was happening, take the mask off, administer the drops, wait a little while and then gently open my eyes without any pain.
    The mask is not tight enough to keep my eyes completely closed, but it does seem to serve as a "training device" , if you will.
    I had the most terrible erosion occur in my right eye on the morning of January 1st and since then I've almost been afraid to go to sleep. The sleep mask has alleviated that worry for me, at least for the most part.
    I'm not saying it is the answer to this problem, but for now it's what's working.

    Here's to erosion free lives for all of us !

    Take care ,

    Terri

    Last edited by TerriD; 01-18-2006 at 04:50 PM.

     
    Old 01-19-2006, 07:08 AM   #42
    lwmom360
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    Re: Recurrent Corneal Erosion

    Well, I had another erosion last night (actually 5:15 am) Again, out of nowhere. I was able to keep my eyes closed which does help tremendously. Before I would keep them closed until I had enough courage to open them knowing the pain that awaited me. I don't know why I didn't think about NOT opening them. Anyway, this morning something differnet happened. It was about 15 min. into the attack and the pain was starting to subside. I was using the Tears II when I felt a new pain. I think that a piece of "sleep" from my eye or maybe an eyelash got into my eye. I kept my eye closed but I could feel this "thing" moving around. I finally was able to open my eye without further irritating the erosion but this othe thing was hurting me. With the light sensitivity I couldn't go look and see if something was in my eye but I finally got a q-tip and rubbed the bottom part of my eyelid (inside) and got it out.
    What is kinda strange is this, I used the muro last night before bed and also when I woke up during the night. The last time I used it during the night I also had an erosion. Coinsedence? I usually don't wake up during the night to use it so this is the only two instances to compare.
    I just hope it didn't further scratch my eye. Has anyone had more than one "bad spot" in one eye?
    Gena

     
    Old 01-19-2006, 11:09 AM   #43
    mike1961
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    Re: Recurrent Corneal Erosion

    Were you able to identify what it was (an eyelash or something)? Adding LOTS of artificial tears when awakening to an erosion should definitely help. More is better...you can't add "too many" artificial tears. Try to stay as "pro-active as possible." Keep at it and remember this: when you get an erosion:

    1. Blink as little as possible...try and just keep the eyes closed and relaxed while literally "drenching" the eyes with artificial tears while keeping the eyes closed, still and relaxed for 15 minutes (add more tears as needed for pain while trying to keep your eyes still and relaxed). This is all done laying flat on your back while looking up at the ceiling for about 15 min. After that, gently open your eyes and they should feel better...next, when starting the day, consider warming Muro 128 and adding it to your eyes (definitely warm the muro).

    Hopefully this will keep a minor erosion from getting major...the major ones set you back a lot further than the minor ones.

    Best to you,
    Mike

     
    Old 01-19-2006, 11:17 AM   #44
    mike1961
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    Re: Recurrent Corneal Erosion

    LWMom - When you awaken in the middle of the night, are you warming the muro either under your armpit or under warm water before applying it? If it happens a third time I would question whether it could be the "salt" from the muro that is hardening in some way in your eye. If so, you may need to look into a non-salt ointment such as Refresh PM or something when doing the second application...possibly even the first...I have never heard of a situation like that but we all know that Muro is a salt ointment and you may only be able to use it during the day if that is happening with you. You may need to check with a pharmacist if that is possible (that muro could somehow turn into salt and irritate your eye at night). Keep in mind...the eyes do not produce tears when closed and you are sleeping at night.

    Mike

     
    Old 01-19-2006, 11:30 AM   #45
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    Re: Recurrent Corneal Erosion

    I wasn't able to identify what was in my eye. At that time I couldn't focus well enough and later the kids were up and had moved the q-tip. It was so frustrating, I knew I needed to keep my eye closed for the erosion but then I knew if I wanted that thing out I had to open my eye. I pray that will never happen again.
    I am warming the Muro at night.
    Gena

     
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