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**Tempestuous** · 09-Oct-2009, 12:09

Hi Mike.

I'm new here myself but have had rce, dry eye, ebmd and Meibomian gland dysfunction. So now you know me heres my thoughts & experiences with what you have said...

I regularly get rips whilst my eyelids are still stuck shut from the dried out lubricant. This typically happens when I enter REM sleep about 3 hours in so I am clearly unaware of my eyes moving.
Could this be whats happening to you?

I also used to be on a lubricant which didnt work for me as it was unable to keep my eyes lubricated overnight. At times I would feel my eyes sticking to the lids whilst I was still trying to go to sleep. Changing the lubricant I used for overnight use fixed this problem.

With regards to the pressure build up you mention I'm not familiar with that sensation. Certainly after the eye has ripped, anything - including eyelids - touching the eye for up to 48 hours do cause pain and when sometimes trying to keep them open can help. It may also be worthwhile getting the underside of your eyelid checked for damage. I had a rough patch on the underside of mine which caused me some problems.

Sorry I cant be of more help.
Keep us posted if you find out anything more and good luck.

**Rebecca Petris** · 09-Oct-2009, 12:32

Hi Mike & welcome.

I think a number of people get RCEs even without eyelid movement. I don't really know about the mechanism that causes it. Hope you'll find some useful information about additional treatment options here - there are a lot of RCE patients and many with great blogs.

Are you dry in addition to having RCEs?

**Tempestuous** · 09-Oct-2009, 12:33

I've just remembered something...
At the end of the first year I changed specialists to my current one. At that time he found that my eyes were infected, inflamed, certain layers of the eye had thickened and bulged out, both eyes were always very red and I had thick blood vessels running through both eyes.
I seem to recall a sense of pressure at that time.
I believe the treatment was doxycycline, chloramphenicol, vismed, simple and a fairly strong dose of prednisolone.

One other experience I have had which may or may not be a factor...
Up to a few days after a minor rip where everything seems to have settled down, the pain gradually mounts with stabbing sensations at the front and culminating in a rip like pain yet without the classical morning stick-rip experience. What essentially happens is that the initial injury partially dislodges a flap of the epithelium which eventually gives way and exposes the raw nerves. So perhaps that could account for your growing pain and rip without a rip sensation.

And yet another point I'm just discovering is that as the condition of the eyes changes, the type of lubricant may need changed also. But for that you really need to speak to a good specialist so you dont get one that does more harm than good for your particular eyes.

If I remember any other possibilities from my experience I'll let you know.

Good luck.

**mike1222** · 09-Oct-2009, 13:16

Thank you both for your replies and here are my responses:

Rebecca - no, I don't suffer from dry eye at all. My eyes were never dry and never feel dry. I only have RCES in my right eye which was set off from an accidental finger poke injury. The fact that it has not healed and I have RCES could clearly be indicative of an underlying disorder such as EMDB or possibly an autoimmune disorder. But, I have no dry eye at all and the RCES is only in my right eye since the injury.

I had it fully under control for over 4 years.

I will say that in some ways - the MORE DRY ones eyes get at night (such as in REM) the better because the eyelid would move with the eye (as if glued together) and therefore not cause an erosion. One could surmise that in that way the ointment could cause more harm than good but obviously that is not always the case. The action of trying to force the eyelid open upon awakening is what can easily cause an erosion which is easily avoided by adding artificial tears.

Tempestuous - I'M ABSOLUTELY POSITIVE that this problem I'm currently having is not from eyelid movement such as when in REM. I had the problem completely under control for over 4 years. I have noticed sometimes this "pressure build up / wierd feeling" comes on slowly and actually wakes me up. Because of my prior conditioning I can easily keep my eyelids STILL upon awakening and as I do that I can actually feel pressure increasing while fully conscious - I've then noticed that if I QUICKLY and IMMEDIATELY open my eyes before the pressure gets too intense (like a balloon about to burst) then I am just fine. But, I've also noticed this when I'm still awake before drifting off to sleep and I will lay there and I become fully aware of what is happening and I'm CERTAIN that I'm completely awake and my eyelid is totally still and I can start to feel pressure build up slowly but sharply and I'll still wait just to try and get a clear idea of what is happening and within 10-15 seconds I HAVE to open my eyes or I know I will get a stabbing erosion. The problem is when this happens in my sleep and I awaken to the erosion - it is absolutely stabbingly painful. Last year (before my epithelial scrape) I was getting them with such intensity I would awaken and it would feel like someone literally stabbed me in my eye and the pain would be HUGELY intense for at least 15 minutes (full blown erosion).

I just cannot explain this. At first (a year back) when this kind of erosion started I didn't even think it was an erosion. I made a post on another forum because I thought it was an EYE SPASM because that is how the erosion felt - it was that intense where it felt like my eye was having a spasm along with an erosion.

Anyways - I can assure you that this kind of erosion is very different than eye lid movement sloughing off cells. I do believe that if one sleeps with their eyes slightly open and their eyes do dry out at night then in some ways it's more difficult for REM to cause erosions because the eyelid will move with the eye. But, the trick is to keep the eyes as STILL AS POSSIBLE upon awakening and just apply the artificial tears. Now, in my case that worked for 4 years but now this new problem is kind of the opposite - I have to open my eyes as quick as possible or it's like they are going to just explode.

I have no idea what this is about - but I was thinking perhaps it was on the lines of moisture buildup underneath the cornea that needs to evaporate or the pressure gets too intense - again - this is all theory and conjecture because I just don't know why after 4 years of having everything under control and applying artificial tears upon awakening with 100% success and now this. It's a different kind of erosion (different reasons for it happening) and if I could understand it better then perhaps I might be able to control it.

Thanks again for all feedback.
Mike

**liz56** · 09-Oct-2009, 13:30

Hi, Mike.

Welcome. I'm sorry to hear that your RCE's have returned.

Has any doctor (likely a corneal specialist would know, but not necessarily) told you that you have map-dot-fingerprint dystrophy or anterior / epithelial basement membrane dystrophy or Cogan's dystrophy? I ask, because the studies that I have seen all say that the failure of an eye injury to heal is due to one of two reasons-- that the injury is severe and deep or that "there is an underlying condition," which is usually the dystrophy, known by all of those names, mentioned above.

The dystrophy cycles, and it might be the reason that the condition improved and then got worse.

That is just a thought for the next time you see your doctor to maybe ask him or her about it.

I hope that you are soon recovered once more!

--Liz

**mike1222** · 09-Oct-2009, 13:36

Rebecca - I almost forgot - one comment that I think might be helpful to many as you said:

<<I think a number of people get RCEs even without eyelid movement. I don't really know about the mechanism that causes it.

I have a strong theory on what does cause this. Since most probably do not know if they have eyelid movement I'm assuming you mean they are getting RCEs during the day? If so, my theory is they had a minor one at night and their eyes feel kind of "dry/stingy/sensitive" in the morning even though they would not classify it as a true erosion.

My theory is the epithelial layer has "worn off" more than normal at night but not a classical full erosion. So there is slight pain / sensitivity. Blinking during the day continues to wear more epithelial cells off faster than the body can replenish them and thus an erosion results. I have also discovered a few really good remedies (which work well when the eyes either have full erosions in the morning or just don't feel right):

AFTER AN EROSION OR IF THE EYES DON'T FEEL RIGHT IN THE MORNING (1 and 2):

1. Lay down for 15 minutes on one's back with the eyes closed and relax but DO NOT fall asleep. I've found falling asleep on one's back is the worst for the eyes are almost guaranteed to stick and if one awakens and "pops" their eyes open without artificial tears first than an erosion is almost certain. But, the back seems to be best when recovering from an erosion with the eyes closed, still and relaxed.

2. WARM an ointment like Muro 128 under warm/hot water and then apply it to the eye(s). I find warming the ointment makes it much easier on the eyes when applying it (don't drive of course when vision is blurred from the ointment).

Applying ointment in the morning when my eyes are sensitive has really worked wonders where my eyes don't have that sensitive feeling for the rest of the day.

3. But - unfortunately I'm still perplexed by my current problem where erosions can happen with what appears to be "pressure build up" when my eyes are closed either before going to sleep or upon awakening. If I open my eyes before the massive erosion - then I'm just fine.

4. TO AVOID EROSIONS: ALWAYS apply artificial tears upon awakening - SLOWLY open ones eyes and if there is any sense of stickiness/dryness then apply artificial tears to the eyes while laying on one's back with the eyes still closed and relaxed.

Mike

**mike1222** · 09-Oct-2009, 13:50

Originally posted by liz56 View Post

Hi, Mike.
Has any doctor (likely a corneal specialist would know, but not necessarily) told you that you have map-dot-fingerprint dystrophy or anterior / epithelial basement membrane dystrophy or Cogan's dystrophy?--Liz

Liz - the doc did do a map dot a long time ago. I never did ask if I have EMDB or another dystrophy but the treatments have ranged from just about everything except a transplant.

What has me perplexed is this problem seems very different. I understand what you are saying about how it can cycle. However, the problem right now is that I do not believe I'm getting erosions from eye movement or eyelid movement (in fact - I'm almost certain of this). I successfully avoided them for over 4 years and that to me is more than a cycle. The problem seems to be some kind of pressure buildup (perhaps under my cornea) that causes the erosion. It's VERY IRONIC because prior to all this for me as well as everyone else if I popped my eyes open I would get a massive erosion. Then I learned to keep my eyelid still and apply artificial tears before opening my eyes when I would awaken and I would be just fine.

Now - the problem is completely the opposite - I have to POP my eyes open as FAST AS POSSIBLE to AVOID an erosion when it starts to come on. In other words - if I am awake with my eyes closed and I start to feel this kind of pain come on and I quickly open my eyes - I'm just fine! But, if I purposely leave my eyes closed then I can feel the pain start to increase more and more and it feels like something is trying to break through the center of my eye (sharp stabbing pain coming on but is avoided by opening my eyes).

Mike

**Rebecca Petris** · 09-Oct-2009, 14:01

Originally posted by mike1222 View Post

Since most probably do not know if they have eyelid movement I'm assuming you mean they are getting RCEs during the day?

No, I meant night erosions, and I was referring to people who have immobilized the lid with tape or Tranquileyes goggles. But spontaneous erosions certainly can happen with severe dry eye anyway.

**liz56** · 09-Oct-2009, 14:15

Hi, Mike.

Just to clarify, did the doctor say that you had map-dot-fingerprint dystrophy? If you recall a doctor mentioning it to you, it might be what is going on with the basement membrane that is between the epithelial layer of the cornea and the stroma.

I have that, plus a previous eye injury from back in my teens. (I'm 42 now.) Plus, I have dry-eye syndrome. If you've ever been put on a course of Muro 128 5%, then you know how that can help. I currently use Dwelle, which is like Dextran 10% (which I used and found Dwelle to be better, not to mention cheaper, not to mention that one need not chill it!) in that it draws the excess fluid from the edema that causes irregularities on the basement membrane and then breaks through the epithelium in RCE's.

I have come to the conclusion that as long as I have this condition, I must keep a regular routine of either hypertonic drops, like Muro 128 5% or osmotic drops, like Dwelle or Dextran 10%, every four hours or so. It's all maintenance. I have not tried going one day without drops (though some days I can go five or seven hours between drops) since I got onto this program with the corneal specialist who finally helped me.

I spoke with a woman who worked for my insurance company once, who has the same dystrophy, and she said that she went to an "aggressive" corneal specialist who was at the eyecare facility at a top-tier research university. She had a corneal transplant and never had the problem again. I am afraid of surgeries, so I am sticking with my drop plan until I cannot, but since you mentioned it, I thought I'd mention that anecdote.

Also, I could be way, way off base with understanding your condition. If you are feeling pressure, I wonder if you've been checked for Fuchs dystrophy, which is hereditary. That one happens further back in the eye, in the endothelium, behind the stroma, and once it becomes advanced, it can cause RCE's. The thing about Fuchs is that people wake up with blurry vision that gets better through the day; that's the first thing doctors ask about with that one.

It sure sounds like something besides an injury is happening here, but I could be way off. I am not a doctor.

I hope that you can identify the underlying problem, so that you can address it.

Best wishes,
Liz

**mike1222** · 09-Oct-2009, 15:42

Again - thanks for the feedback. I'll research it further but I'm quite certain if it were not for that initial injury then I would be fine today. I have read that RCES is easier to manage/maintain/cure when it is onset with an injury as opposed to it coming on spontaneously which is more indicative of an underlying dystrophy. Also, I have no problems with dry eye at all.

One more thing - I think it's possible that something changes at night (weather, etc) because it seems that if I nap during the day (the rare times that I do) I'm far less likely to have any problems with RCES.

I should also mention that this new problem I have with RCES (where it can happen if I'm awake and my eyes are closed) happens if I wear a bandage lens and the pain again is absolutely excruciating. If I were to open my eyes QUICKLY right before the erosion starts then it will completely stop it from happening.

It's really quite something the difficulty this problem is to manage and the number of doctors we go through who seem to get frustrated with our condition. I think the only other thing short of a transplant I can do is the PTK a second time. I have heard it's very successful the second time when it fails the first time but I don't know if anyone else out there has had to do it a second time.

Mike

**msienkiewicz** · 10-Oct-2009, 14:57

Mike,

I appreciate your TIPS to avoid RCEs. I do believe that I am aving minor rips during the day as I have the stabbing pains that you speak of. However, I am not having any vision problems or light sensitivity. The pains are usually resolved by closing my eyes for a few minutes.

I would love to try this dwelle at night. I do find that if I sleep on my back, my eyes are stuck together more firmly in the morning.

I have found the most awesome sleep mask. It is foam and has a velcro strap in the back to adjust the tightness. It has deep set eye holes so that it does not rest tightly on your eyes like a regular sleep mask. The others glued my eyes shut. This one gives your eyes "room." It was from Meijers - $5.00.

I will try your suggestions and feel I really need to use this dwelle before bedtime. I do not do well with ointments of any kind.

Thank you,
Melissa

**Rebecca Petris** · 10-Oct-2009, 18:21

Melissa, by any chance is that the Sweet Dreams mask? (I was trying to find what you're talking about online.) Here's a link - although I think the picture makes it look bigger and more rigid than it is in reality. I got these ones in stock a week or so ago but haven't had a chance to upload it to the online shop to make it available. I really like it as an alternative 'cavity' style sleep mask that is soft and nowhere near as bulky as the Escape. Anyway I was just curious because it would be great to hear from someone who's actually used it (besides me).

**mike1222** · 10-Oct-2009, 21:35

msienkiewicz and others - yes, I can't begin to tell you how important it is to apply artificial tears in the morning before moving your eyelids. It will completely UNSTICK your eyes without any erosions at all. I don't know why but I do find that it's much easier to keep your eyes closed and relaxed before adding the tears when sleeping on my side or stomach and then rolling to my back (to apply the artificial tears) when I awaken.

I still think though that my situation has changed such that there is some kind of moisture build up (perhaps underneath my cornea) and it seems to cause an erosion if I do not open my eyes. This is very different than eyelid movement which seems to cause most erosions but can often be eliminated or very much reduced by adding tears upon awakening.

I'm hoping that by going back on Muro 128 ointment at night, it will remove the excess moisture underneath the cornea and stop the erosions I'm having which are unrelated to eyelid movement.

Mike

**liz56** · 11-Oct-2009, 07:00

Rebecca & Melissa, I'm a huge fan of Tranquileyes. They help me, because I have lagophthalmos, I believe, and my corneas stay covered all night, thanks to the goggles.

Melissa, for RCE's I use Dwelle through the day to help the basement membrane "stick" to the epithelium. It seems that it is something that has to be every day and on-going for me. It took months for it to work, but, little by little, the erosions became minor, then went away. Now, I just manage it, but still use the drops several times a day. The good news is that they also alleviate that "menthol sensation" that can be quite painful and that makes me just want to close my eyes to keep the air off of them.

Mike, it seems like you are not afraid of surgery and are looking for a way to not have to maintain this problem. I'm interested to know your progress. Myself, I fear a surgical option, but I do not doubt that it works for many people, so I do try to follow those who have it done, though I follow them in studies, which never go beyond two years. I hope that you'll keep us posted on how you fare and what you try, because it really would be great to not have to prep for sleep, to spend the days in comfort, and not have to clean goggles and gooey eyes in the morning-- that is all just to manage the issue of avoiding the severe pain, which is at the heart of the matter.

Also, on the drops in the morning, I felt very lucky when I got to the point where I would stick in the morning rather than being awakened by an erosion out of a deep sleep. Erosions struck me in the middle of the night, and as they improved, I had sticking in the morning. Though I keep a PF drop near the bed, just in case, my first corneal specialist demonstrated a massage technique where one very lightly rubs the upper eyelid, very close to the bone, just under in fact, to stimulate tear production for mornings of sticking. Thanks to Tranquileyes, I have very few mornings these days when I stick, but they still happen. Again, even then, I count myself as being lucky for not waking in pain and dealing with double vision for the next three days.

Best wishes to you as you search for a permanent solution to this confounding problem!

--Liz

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Recurrent Corneal Erosions - Cures and Questions

Recurrent Corneal Erosions - Cures and Questions

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