Recurrent corneal erosion sufferer

[Mcgoldilocks]

So, here's what happens to me...

Every few months I wake up in the morning and immediately upon opening my eyes, one is bright red and sore and the pain is immediate and severe, so bad that I can't move my eyes at all until it's better, which will take most of the day. So for most of the day I have to sit completely still and not open either eye. If I open the good eye, it tries to focus on something which moves the other one, so I keep them both shut. I try not to breathe to heavily and I can't let my mind wander just in case my eye moves. The best position to lie is face down so the weight of my eyelid doesn't press down on my eye.

Before Christmas I had to take a week off work as I woke up and the pain didn't stop all day. My boyfriend persuaded me to see someone, so I went to the hospital and the ophthamologist said my cornea was sitting like a blister on my eye, so she scraped my cornea off and gave me an eye patch for a week and told me to use lacri-lube for the next three months in the hope that it would heal properly (but with no guarantees that it would).

I've been using lacri-lube religiously every night in both eyes but guess what? Last week I woke up and it had happened again in the other eye.

I'm scared to go to sleep! After a bad episode I'm scared to go outside! Why won't any of the doctors/opticians I've seen tell me straight what's going on and give me proper advice?

I'm now taping my eyes at night as well as using a hot cloth for 10 minutes and carrying on with the lacri-lube, but I've made another appointment with the doctor and this time I will go in armed with more knowledge. I've also made an appointment at a private clinic which will cost £275 but it is well worth it, I can't carry on like this!

[allie0426]

Hello

HI,

Our stories are so similar...I woke up one day with severe pain in my right eye and an inability to see. I went to the emergency room, fearing a brain tumor quite frankly, and was told I had a corneal abrasion (he said "you must have done something to it" which I didn't...). He handed me a couple of percocet and said to go see an opthalmologist in the morning, which I did. He said the same thing that the ER doc said, but he cut away some "dead cells" and put on a contact bandage, as well as gave me antibiotic drops. Three days later, he took out the contact, said all was well and sent me on my way.

That was the first week of work I missed, but I figured it was all over so I had nothing to worry about. That was just a few months ago. Since then, I have had several more erosions, figured out I had RCE, missed many more days of work, and am no closer to knowing how to manage it then I was when it all started (although discovering this board a few days ago seems like such a giant leap in the right direction).

I, like you, am totally afraid to sleep. I sleep very little, and wake up at least every 1.5-2 hours to put the "goop of the day"(as I am in discovery mode) in my eyes in hopes of not having another erosion. I have found out that my condition is caused by an epitheleal dystrophy (at least that is what one of the 4 doctors I have seen says) and the condition is present in both eyes, although I have only had erosions in the right eye. I have had 2 debridements and most recently (on monday of this week), a stromal puncture. The contact bandage came out Wednesday and as of today, still have foreign body sensation but none of that horrific pain that comes with an erosion (and mine seem to go on...I've not had one that ends in a few hours...mine go on for days, usually until the "flaps of cells" are removed and a contact is put in for healing).

Anyway, keep reading through these threads...there is so much information.

Good luck to you and I hope you get your erosions under control very quickly.

Allie

[darviets]

me too

The same thing happens to me. Unfortunately, I've been suffering with this for about 2 years. My doctor tells me to "keep the eye moist", and I DO, but I never know when I'm going to wake up with the terrible pain. I have one right now.

I wish someone had an answer to this problem because, frankly, I'm tired of waking up each day and wondering "what kind of day I'm going to have today!".

Isn't there a cure???

[Mcgoldilocks]

HI,

Our stories are so similar..

Good luck to you and I hope you get your erosions under control very quickly.

Allie

Allie, I'm so sorry about what you are going through, it must be hell. I've been erosion-free for a month now which is great, though it is annoying to have to go through the whole process of putting goo in my eye and taping my eyelids down every night, plus not drinking much alcohol (red wine especially seemed to suck the moisture from my eye, I never have more than one glass now and I make sure I drink water afterwards) it is of course well worth it. Of course I still worry and I don't think I will ever be able to not worry.

Oh, I don't know if you've come across this before but I read somewhere that you should train yourself not to open your eyes when you wake up, this is what I've been doing as well. As soon as you're conscious, sit up SLOWLY without moving your eyes or eyelids, lean forwards so your lids aren't pressing on your eyeball and very slightly move your eye with them still closed, then if all is well touch your eyelid, giving it a slight, gentle stroke working up to opening the lids. If there is at all any stickiness put drops in the inner corner so they can seep in and unstick the lid.

This is working for me so far, so I have my fingers crossed for you.

Good luck,

Lindsey

[Rojzen]

that exchange with Dr. Holly on Dwelle for RCE

Wondering, Allie, if you have had a chance to try Dwelle for the erosions and erosion prevention.. .I recall a recent exchange you had with Dr. Holly regarding treatment for erosions, and at the conclusion of his description of the mechanism of erosions, and problems with using bandage lenses for these, he indicated that anecdotal evidence supports long-term use of Dwelle for RCE. . .

We have at least one member who attributes her major reduction in erosions to including Dwelle in her regimen. . .She also uses a gel at night, if I recall correctly, but it's not a petrolatum ointment. . .

Anyway, it has been a long while since I had an erosion, but the way my eyes now slide open easily in the morning, after using Dwelle before bedtime, makes me feel that the Dwelle is helping to prevent resumption of my old RCE cycle. . .

[allie0426]

Dwelle

Hi Everyone,

The erosions have become less severe, but I have them 1-2 times per week. I am using Dwelle now, and am thinking that it is directly contributing to the decrease in severity. I have an appointment with Dr. Latkany on March 3d, and am hoping that will shed some real light on things.

One thing is for sure...this is life altering stuff and I can hardly believe how little is known about it. My heart goes out to each and every one of us that suffers from this, or other dry eye maladies.

Allie

[Rojzen]

with thanks and sense of incremental improvement

Thank you, Allie, for the update on your erosion rate. .What you're experiencing compels me to focus on how Dwelle has been changing my own pattern. . .

I sense that I am still far from stable, in the sense of being able to get by for indefinitely long stretches without protective eyewear, but the longer I use Dwelle, the longer these stretches become. I also find that as soon as I redose with Dwelle (or Dakrina, these days), I buy another long stretch of normal-feeling time. What's interesting, too, is that only a few weeks ago, I still couldn't go into supermarkets or outdoors, without protection, even though I was using Dwelle religiously already. . .Now, I go to these places without even thinking, and have stopped carrying the eyewear along, at times. .. What I'm thinking is that the action of these drops gradually may impart some improved structure and function to the tissues responsible for maintaining tear stability, in a way that therefore gradually restores more normal spontaneous function of the eye. . .

Anyway, I would be satisfied even to think that these or any drops simply provide sustained symptomatic relief. . .

I will have some numbers to report next week, after my first eye checkup after my sustained use of Dwelle, Dakrina, and FreshKote. . .

[liz56]

Thanks for your update, Rojzen. You are awesome for putting so much thought into what works and detailing how it does!

--Liz

[Rojzen]

selfish pleasure

Dear Liz - -You do the same for us all regularly! In my case, it is a selfish pleasure to detail how I am doing, especially when there is progress. . .As you can tell, I don't actually fully understand what happens in my eyes, but navel gazing does lend itself to some interesting theories (:^). . .

In any case, Dr. Holly's science is the first body of concepts that has ever made sense as an explanation of my self-involved dry eye journey, over the past 10 years. . .I would say that proof positive, for me, came when I read what Dr. Holly was saying about misconceptions regarding "lipid replacement" and the role of lipids as a tear film stabilizer, and not as a preventer of "evaporation". . .For eons, I was told that I had a lipid problem. . .Not enough. . .the wrong kind. . .a TBUT that broke up instantly. . .Now I am somehow improving without doing a damned thing about replacing the normal lipids I am supposedly missing (:^). . .In other words, somehow, I suspect, my tear film is becoming more stable through some other mechanism, which, I presume, is better wetting and reduced de-wetting. . .Eureka. . .At least for now. . .

[Mcgoldilocks]

Update

I went to the hospital appointment, the ophthamologist said there's no cure but there are various treatments and I need to see the corneal specialist. He also said if it happens again, to stress to them how painful it is and tell them I NEED proper painkillers. He's sent my file to Moorfield's Eye Hospital, I have to go straight there when it happens again.

Last Saturday I had an erosion - I hadn't taped my eyes down. I have never had an erosion when my eyes have been taped down so I won't make that mistake again.

[liz56]

Hi, Mcgoldilocks.

Sorry to hear that this problem keeps coming up. It does take vigilance to stave off the erosions. I found that Tranquileyes, used dry, help me, and I don't have to worry about the tape issue.

Also, have you tried Dwelle? It's worked wonders for me. I use it about five times each day. It not only helps with the erosions, but it also makes my eyes feel better. The spots where there were erosions often feel raw, but Dwelle gets me through the day.

Good luck,
Liz

[shoebox]

Sounds Familiar

This waking up with eye pain sounds familiar. How do you go about getting it diagnosed? I told my eye doc at last visit --that "sometimes" my eyes water all night long and when I wake up they're red and burning or hurting and light sensitive, and my eyes get oh, sooooo puffy!!
She was like "okay..." and basically suggested ointment at night, or thick drops.
Should I try to get in to a doctor immediately when an episode occurs to get an actual diagnosis more specific than DES? To have someone actually LOOK when I'm having the problem? Of course, that's tough because when it's bad it's too hard to drive...
Any suggestions?

[jas0261]

Recurrent erosions can be treated much more effectively than what anyone here has mentioned. Your doctor should know these treatments and try them in a specific order, from least invasive to most.

Recurrent corneal erosions (RCE) happen because the outer layer of the cornea, which is epithelium (similar to the outer layer of your skin) is not being properly anchored to the next layers. New research indicated this may not actually be the case, but it does make sense. So, if there's not a sufficient anchor, the epithelium will "slough off" or wrinkle. It occurs most commonly after awakening or in the morning for an obvious reason. When you sleep, your eyes are shut (no kidding). But, when your eyes are shut, less oxygen gets to them and there exists more swelling. The eyelids are resting right over your cornea and start to "stick" to the cornea some. Then, when you abruptly open your eyes, the eyelid easily tugs on the loose epithelium causing the symptoms you experience. The cornea is packed full on nerves which, when disturbed, cause your pain. The eye responds by initiating the inflammatory cascade causing the redness.

There are a few basic reasons people get RCEs. One: from trauma to the cornea, either recently or long ago. Two: from a corneal degeneration, such as Fuch's endothelial disease which is easily seen by an eye doctor if they know what they're looking for, or three: spontaneously without reason.

Regardless of what caused it, the treatment is aimed at reducing the recurrence rate. There is an ointment and eye drops used alot for this, two surgical techniques, and a good medical therapy that all work well.

Muro 128 ointment at bedtime with lubrication throughout the day works extremely well. This ointment is basically sodium chloride (salt solution) that dehydrates (reduces the swelling) of the cornea, allowing the cornea to have a better chance of anchoring to the next layer. This will not make it go away, but used every night will make you much more comfortable and improve your quality of life.

The surgical techniques basically tattoo the epithelium to the next layer causing some scarring, in hopes of providing a permanent achor. These scars do not usually affect vision either.

At all stages of RCE, a bandage contact lens may be used to prevent the adhesion of the eyelid to the cornea to promote healing overnight.

The medical therapy utilizes a cheap antibiotic (doxycycline) daily for up to several months. This is not for infection, but because this drug helps to promote collagen formation in the cornea which in turn should help with adhesion.

All of these therapies work extremely well. I always start with Muro 128 ointment and proceed from there.

P.S. Any general optometrist or ophthalmologist with a brain can diagnose this and treat accordingly - as effectively, if not more, than a corneal specialist.

[liz56]

Just to add to jas0261's post. If stromal puncture does not work (I think that is what the "tattooing" referred to), there is also PTK.

Here is the rundown of all treatments that most doctors use in great detail:

MODERN APPROACH IN THE TREATMENT OF RECURRENT CORNEAL EROSION written by Zdravko Mandić, Ivana Bednar and Dean Šarić and in Acta Clin Croat, 46.1 2007.

They mention everything except for Dr. Holly's Dwelle. I'd prefer not to go a surgical route, so I'm just babying my eyes and trying to use drops with a high oncotic pressure.

Good luck to the other rce sufferers. It is not an easy affliction to have.

--Liz

[Mcgoldilocks]

Recurrent erosions can be treated much more effectively than what anyone here has mentioned. Your doctor should know these treatments and try them in a specific order, from least invasive to most.

Recurrent corneal erosions (RCE) happen because the outer layer of the cornea, which is epithelium (similar to the outer layer of your skin) is not being properly anchored to the next layers. New research indicated this may not actually be the case, but it does make sense. So, if there's not a sufficient anchor, the epithelium will "slough off" or wrinkle. It occurs most commonly after awakening or in the morning for an obvious reason. When you sleep, your eyes are shut (no kidding). But, when your eyes are shut, less oxygen gets to them and there exists more swelling. The eyelids are resting right over your cornea and start to "stick" to the cornea some. Then, when you abruptly open your eyes, the eyelid easily tugs on the loose epithelium causing the symptoms you experience. The cornea is packed full on nerves which, when disturbed, cause your pain. The eye responds by initiating the inflammatory cascade causing the redness.

There are a few basic reasons people get RCEs. One: from trauma to the cornea, either recently or long ago. Two: from a corneal degeneration, such as Fuch's endothelial disease which is easily seen by an eye doctor if they know what they're looking for, or three: spontaneously without reason.

Regardless of what caused it, the treatment is aimed at reducing the recurrence rate. There is an ointment and eye drops used alot for this, two surgical techniques, and a good medical therapy that all work well.

Muro 128 ointment at bedtime with lubrication throughout the day works extremely well. This ointment is basically sodium chloride (salt solution) that dehydrates (reduces the swelling) of the cornea, allowing the cornea to have a better chance of anchoring to the next layer. This will not make it go away, but used every night will make you much more comfortable and improve your quality of life.

The surgical techniques basically tattoo the epithelium to the next layer causing some scarring, in hopes of providing a permanent achor. These scars do not usually affect vision either.

At all stages of RCE, a bandage contact lens may be used to prevent the adhesion of the eyelid to the cornea to promote healing overnight.

The medical therapy utilizes a cheap antibiotic (doxycycline) daily for up to several months. This is not for infection, but because this drug helps to promote collagen formation in the cornea which in turn should help with adhesion.

All of these therapies work extremely well. I always start with Muro 128 ointment and proceed from there.

P.S. Any general optometrist or ophthalmologist with a brain can diagnose this and treat accordingly - as effectively, if not more, than a corneal specialist.

Wow, this is the most comprehensive explanation of treatments I've come across. Thanks for this. My doctors have only recommended using ointment at night, I'm currently going through the long-winded process of seeking proper treatment through the NHS as using the lubricant hasn't reduced the occurrence rate of my erosions.

I am considering laser eye surgery, do you think my 'spontaneous without reason' erosions are a reason to avoid getting it done? I'm too afraid to wear contact lenses these days but I'd really like to ditch the glasses.