New to forum, have recurrent corneal erosion need support

[Seahorse]

Hi everyone. I am new to the forum and am desperately seeking support. Four months ago I experienced excruciating pain in my right eye upon wakening. Went to an optometrist who diagnosed me with RCE, explaining that because my eyes are dry, the cornea sticks to the lid while sleeping then rips when I open my eyes. I was advised to use artificial tears liberally throughout the day, muro drops 4x a day, then Muro 128 ointment nightly. Did that for 3 months and still had nightly attacks.

Now going on 4 months and the episodes have reduced to 1 x a week, though I think that's because I lay awake most of the night hydrating with drops, too terrified to fall asleep. I am averaging 3 hours sleep and feeling a lot of anxiety and depression.

I'd like to know if and when the cornea will heal completely or if painful episodes are my life sentence. I read somewhere that if you can go several weeks without an episode your cornea will heal. If that's true then each time I have an attack am I back to square one?! I guess I'm looking for light at the end of the tunnel. I can't seem to get clear answers from my optometrist.

Does anyone else suffer this condition? What has been your experience? Can you offer any tips or information? I read that a sleeping mask can help if dry eye is due to lid not closing completely. I tried that for a week but still had attacks even with eyes shut.

Thanks so much for listening.

[Hokucat]

What kind of sleeping mask did you try? For me EyeSeals 4.0 works best. Some people find bubble bandages work better, or taping their eyes shut at night. These options are all available in The Dry Eye Shop:

https://dryeyeshop.com/collections/nights

It's important to wear moisture goggles during the day too, daytime protection is just as important. I now use scleral lenses during the day to help keep my eyes moist, and notice if I take a few days off from wearing them my eye are better than they would have been otherwise, sort of like wearing a bandaid or chapstick that keeps your eyes from getting dry and chapped before it gets really bad.

I also personally found when my eyes were bone dry Genteal Severe Dry Eye Gel was a lifesaver because it provided a soothing, moist feeling that lasted a lot longer than gel drops or nightime ointments. During my years that I had absolutely zero tear film, I used the Genteal Gel night and day, and I honestly feel it saved my life and gave me a little sanity, and I amazingly never had a RCE during that time likely because I babied my eyes with that, and possibly serum tears. Doctors were surprised I never had RCE with my level of dryness, which many told me was the worst they'd ever seen.

I hope you find some relief soon.

[Seahorse]

Thanks so much for your response and suggestions! I noticed that Genteal gel has a preservative. I just recently tried eye drops that were not preservative free and they stung and itched my eyes. I have a lubricating ointment by systane which feels good but doesn't stop an attack through the night. The one thing that seems to be working lately is my constantly applying artificial tears through the night. I've never been a deep sleeper so it hasn't been a problem to do this every couple of hours. I've tried a few of bandages but they hurt when removing them which I have to do in order to apply lubricant through the night. I like the idea of applying an ointment more regularly. Maybe I will use the systane throughout the day too.

I've never heard of a scleral lense. I had a bandage contact lense in for a week and had to have it removed because when I had an episode it felt like a little crab crawling around my eye.

The sleep mask I am using is just a satin one from dollar store. It seems to help, but I do find it puts pressure on my sore eye. I was thinking of ordering the eyeseals 4.0 mask but wondered if it would help since it won't keep my eyes closed and the attacks happen when my eye lid opens after sleeping. It's very humid in my bedroom too, no fans or AC, and I even installed a humidifier just to be sure. I have been wearing safety goggles around the house and dark, wrap around sunglasses outside but wonder if eye seals might be better.

[Hokucat]

That’s good you are aware it’s better to use drops without preservatives, as especially the BAK preservative can cause or contribute further to dry eyes, as well as sting. Drops with BAK bothered me as well. The preservative in the Genteal Gel is not BAK, and it’s supposed to dissipate once it’s exposed to air when you put it in your eyes. I believe the Dry Eye Shop does not carry any drops with preservatives except this one, because it has this different type of preservative without the ramifications of BAK, and has been the go to gel for many people for years. I used it several years night and day and have had no issues. Like I said, it literally saved my life and eyes during my bone dry years.

Below is some info on scleral lenses. There’s different brands but the Boston PROSE scleral website has a good general description, plus they work directly with your medical insurance which helps to get coverage if your insurance does cover it (because sclerals can cost thousands of dollars), whereas some other clinics have you submit the paperwork yourself where often it ends up not being covered. I wear PROSE, out of pocket it cost me a few hundred dollars after insurance coverage. Not everyone can tolerate wearing sclerals, but if you can, it can provide some immediate relief.

https://www.bostonsight.org/PROSE/PR...-Used-in-PROSE

Eyeseals are like a big eyelid over your eyes. When I wake up in the morning, the eye cups are always all fogged up because it did such a good job keeping out the air while I sleep. You could also consider taping your eyes shut, but then it would not be easy to administer drops in the middle of the night if you still needed to do that.