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Does anyone else have recurrent corneal erosion?

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StylesClash

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I've had issues with my eyes for the past year on and off where some days I would wake up with a shooting pain in one of my eyes and then that eye would be blurry for the day. The next day I would be fine and my vision would be normal.

But three days ago when I opened my eye it hurt so damn bad and then I had blurry vision. The problem is: this happened three nights in a row.

Luckily I was able to see an ophthalmologist today and he informed me that Recurrent corneal erosion is what I have. Now I have to put some kind of ointment in my eye at night so that it doesn't happen. In the mean time I am wearing shades everywhere, even work, because it helps my eye feel better. I'm near sighted and wear glasses as I could never wear contacts because I have a weird thing about things going near my eye or in them. Now I have to put this ointment in there or I'm going to keep ripping my cornea. It fucking sucks but I have to do it if I want my eye to heal.

Anyways, does anyone else have this?

Sorry for the length.

First topic on GAF for me.
 
I'm bumping this because I'm sick of it. Even when I put the ointment in my eye, there are days, like today where it still happens. So once again my right eye is blurry for the day. This is the most annoying thing I've ever dealt with and I just want it to stop.
 
Quit being a bitch and get contacts. They are crucial. As a sufferer of corneal conditions myself, I feel your pain.
 
Just wanted to chime in to say you are not alone. I have RCE, and I've been to many eye doctors who say that unless I visit them recently after having an 'occurrence', there isn't much they can do -- and even then there isn't much.

Obviously this doesn't help because I can't predict when it's going to happen and can't book an appointment magically when it does.

There are a few tips I've found that made a noticeable difference:

  • Sleep with an eye mask on - yes you will look ridiculous, but this is the single thing that has made the biggest difference. Make sure it is one that has 'cupped' eye covers so there isn't any pressure on your eyelids while you sleep. These ones are great and pretty easy to find in Canada (Bed Bad and Beyond, Winners/Homesense, etc.)
  • Use a small amount of a saline eye drop before bed - either Lacrilube or Muro 128. Be careful to only use a small amount though
  • Use a humidifier in your bedroom at night, have it in the room, but not right beside your bed either
  • Do not sleep under or near any sort of air conditioning or central heating vent
  • Train yourself to wake up with your eyes still closed - then you can look around with your eyes still closed and gently open them. This doesn't always work, and you need to be careful after they are open that you don't sit up too fast or cause any sudden rush of air into your eye.
Do know that when you do have an 'occurrence', it increases the likelihood of it happening in the following nights while it heals, so take extra care in the days after it happens once. Like I said, the eye mask made the biggest difference for me, I used to get it once a week, now I get it maybe once every 2-3 months? I probably just jinxed myself now!

Hope this helps, wish I had seen this thread sooner! RCE is extremely annoying and painful, sucks so much.
 
I have the exact same symptoms been to the doctors, gave me antibiotics each time, didnt help at all. Dont know what to say dude, we're screwed.
 
RCE (as it has been explained to me by doctors) is basically your body inadequately lubricates your eye while you sleep, resulting in your eyelid sticking to the outer layer of your eyeball. When you wake up and open your eyes, the eyelid pulls off a piece of the cornea resulting in an open 'cut' on your eye, which is extremely painful.

After it happens once, it becomes more likely to happen in the future due to scarring of the cornea which makes it easier for the eyelid to 'stick' in the future.

Mitigating it means avoiding and preventing anything that can dry your eyes out. I get it in both of my eyes -- no fun.
 
I know it sucks that we have it but I am glad I'm not alone. I thought about a mask before and we have thought about the humidifier as well. I just hate the unpredictability of this shit.

I've had a cold since Wednesday so I am guessing my cold medicine dried my eyes out which caused the issue. But that's just a guess. Also. They don't make eyepatches that work with glasses besides the ones that are too close to the eye.

Once again just bitching.
 
Did you have some sort of injury to your eye before experiencing these issues? The etiology of RCE on Wikipedia seems to suggest some past injury or disease.

I wish you all the best, it sounds like a horrible disorder to have.
 
TheJohann said:
Did you have some sort of injury to your eye before experiencing these issues? The etiology of RCE on Wikipedia seems to suggest some past injury or disease.

I wish you all the best, it sounds like a horrible disorder to have.
Click to expand...

Nothing. This started randomly. For the longest time I thought I was poking my eye in my sleep. I wish that would have been it.
 
I went through this two years ago, and holy hell is it painful. I feel for you, and hope that maybe the Muro ointment actually helped you by now. It certainly didn't for me.

Basing on what you wrote, you'll probably end up needing to have your outer cornea layer scraped, and a contact bandage installed, for a couple weeks, to fix the problem. It took me three different Optometrists to finally find one who immediately suggested that. There's a fancy name for it that escapes me right now, but it absolutely solved the problem. Basically, the outer layer of the affected cornea is removed, the contact bandage keeps you from feeling the INTENSE pain that is caused, and the cornea regenerates properly. She told me, based on the severity of the affected area, that the ointment treatment would never have worked.

I do want to warn you: If you do end up having the above treatment, try to time it for when your eye isn't infected. I couldn't wait any longer, as the pain and light sensitivity was absolutely unbearable. The optometrist will be unable to install the protective contact bandage if your eye is infected.... and while they will warn you about the pain... you literally have no idea how bad it will be. I thought the original pain from the erosion was bad, but this was on a whole new level. I now understand how it must feel to literally have a dagger stuck into one's eye. Luckily, it only lasted about 6 hours until the cornea material spread and covered the exposed nerve endings. I will say that by the end of the day, my eye was feeling absolutely amazing. Within two days, the infection was gone, and so was the erosion.

If you are still having issues, or have questions, feel free to post and I'll go into more details. Good luck!

EDIT: I was just about to post this, and saw all the updates. For those of you with recurring bouts, how long have you had them? I went 8 months with it before finally finding an optometrist who recommended the scraping treatment. Have none of you ever been offered this? I was told that as I got older, RCE could come back... but so far I have had zero recurrences.
 
RCE is terrible and will lead to blindness if not kept in check.

I have a friend that has RCE and uses Bausch and Lomb "Muro 128 5% Sterile Ophthalmic Solution" so I would check with your eye doctor first. The stuff is expensive (almost $30 US dollars for 1FL oz) .
 
The thought of that treatment keeps me up at night. My eyes are so damn sensitive that I can't even put eye drops in my eyes. Hell I can't watch someone do it to their own eyes. I just start tearing up.

My eyes are fucked.
 
StylesClash said:
I can't wear contacts. It's just not possible.

Sorry for bitching. I'm just so sick of this shit.
Click to expand...

Honestly, that's just bullshit you tell yourself. After a week or two you get used to the contacts. I felt the same way as you did when I was younger and I got over it. And I wear hard lenses so you can't even complain. Soft lenses are so easy to use.
 
I've heard conflicting things about the Muro. I'm currently using systane nighttime. When my wife is home and she puts it on my eye it's worked everytime. I've done it to myself and I've had it fail twice. I always think I'm using enough and then find out I was wrong.

Maybe I'm the issue...
 
NoLoveForFailWheelDrive said:
Honestly, that's just bullshit you tell yourself. After a week or two you get used to the contacts. I felt the same way as you did when I was younger and I got over it. And I wear hard lenses so you can't even complain. Soft lenses are so easy to use.
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Read above. I appreciate what you're saying but if I can't put drops in, then contacts aren't going to happen. Sorry if I'm letting you down.
 
Shadoron said:
For those of you with recurring bouts, how long have you had them? I went 8 months with it before finally finding an optometrist who recommended the scraping treatment. Have none of you ever been offered this?
Click to expand...

I've had RCE for....6+ years now? I've been to 2-3 eye doctors and they look at my eyes and say they can't recommend the surgery unless they can see scarring which they can't, so they leave it.

I should probably book an appointment to see if I have any scarring now, I haven't gone to a doctor about it in 2+ years, partly because I'd given up, and partly because it happens so infrequently now.

Scary to hear about the blindness though, great.
 
I suffer from RCE, but with a twist. When the erosion happens, my cornea immediately scars over. The hole becomes infected immediately, and staph begins to grow in the area of the erosion. Then, my cornea decides to grow blood vessels into the scar, making it thicker and deeper. At this point, I have almost no vision in my left eye due to the deep scars. Because of the neovascularization, I'm a high risk for corneal transplant. My right eye is a little better, but I'm just barely above legal blindness with best correction. The good news is that what I have is very rare. It is like three corneal issues all rolled into one. I've seen two specialists at the Cleveland Clinic and at Ohio State. In 30 years of practice, I was the 2nd patient one of my doctors had seen with this. My eyes always hurt. The pain never goes away. The foreign body sensation never ends. It is what it is though.
 
adam387 said:
I suffer from RCE, but with a twist. When the erosion happens, my cornea immediately scars over. The hole becomes infected immediately, and staph begins to grow in the area of the erosion. Then, my cornea decides to grow blood vessels into the scar, making it thicker and deeper. At this point, I have almost no vision in my left eye due to the deep scars. Because of the neovascularization, I'm a high risk for corneal transplant. My right eye is a little better, but I'm just barely above legal blindness with best correction. The good news is that what I have is very rare. It is like three corneal issues all rolled into one. I've seen two specialists at the Cleveland Clinic and at Ohio State. In 30 years of practice, I was the 2nd patient one of my doctors had seen with this. My eyes always hurt. The pain never goes away. The foreign body sensation never ends. It is what it is though.
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Holy fucking fuck. How do you deal with that shit? When I wake up and have that pain in my eye I want to kill shit and cry at the same time. How do you deal? I need to learn your coping skills.
 
rabhw said:
I've had RCE for....6+ years now? I've been to 2-3 eye doctors and they look at my eyes and say they can't recommend the surgery unless they can see scarring which they can't, so they leave it.

I should probably book an appointment to see if I have any scarring now, I haven't gone to a doctor about it in 2+ years, partly because I'd given up, and partly because it happens so infrequently now.

Scary to hear about the blindness though, great.
Click to expand...

I can't imagine having symptoms off and on for 6+ years. I was ready to carve my eye out with a spoon after 8 months. I'm sure there are varying degrees of severity, but I really don't understand why the scraping method isn't tried more often. If you do go back, ask your optometrist if there are side effects to the surgery that weren't explained to me. The optometrist that performed the surgery took a look at my past medical records, then a look at my eye, and basically said "this is what we are going to try next."

Also, while they call it a "surgery," it's really not. I had it done in office, and it took all of 15 minutes from start to finish. As I stated above, I went in during the peak of one of my bouts. Full on eye infection, and a nasty scar/rip right in the middle of my eye. I could tell I had one, because my vision was blurred. Maybe try to go in for an appointment during the worst? I didn't even know about the surgery, I was just looking for another opinion, since the eye drops and "rolling eyes before opening them" methods weren't working.
 
I started to have a 'jumpy' eye when I used some medication. And said eye started to get turn to the left and blur a bit. So I started closing my good eye to force the other one line up and not get so blurry. took a week or so.

Sorry to hear about your pain.
 
StylesClash said:
Holy fucking fuck. How do you deal with that shit? When I wake up and have that pain in my eye I want to kill shit and cry at the same time. How do you deal? I need to learn your coping skills.
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I've kinda just gotten used to it. Unfortunately, it's my normal. I went through a period of bad depression over it for a while. At one point, I was on 6 eye drops every hour. Except at night, when I was allowed two hours of sleep. I try to look on the bright side. There was a good chance I was going to lose my left eye after the one infection got so bad, and I had an allergic reaction to one of the many meds I was on.

Everyone always asks me how I deal. I really don't know. I guess I'm a realist. Since I don't have a choice, I just try to roll with it. It almost works....lol
 
adam387 said:
I've kinda just gotten used to it. Unfortunately, it's my normal. I went through a period of bad depression over it for a while. At one point, I was on 6 eye drops every hour. Except at night, when I was allowed two hours of sleep. I try to look on the bright side. There was a good chance I was going to lose my left eye after the one infection got so bad, and I had an allergic reaction to one of the many meds I was on.

Everyone always asks me how I deal. I really don't know. I guess I'm a realist. Since I don't have a choice, I just try to roll with it. It almost works....lol
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That's what my wife says. She has a detached retina and it's her normal. This shit drives me insane moreso on days when I have to work. Luckily that's not today.
 
i have really bad dry eyes and other corneal issues so I have to take refresh pm before bed too, My problem is ulcers from the dryness and inflammation though. Yea I get staph infections like adam it's such a pain, fuck vancom drops :D
 
I fucking hate this shit with all my heart. Eye mask. Systane nighttime. Still fucking happens this morning. I'm going to see my doctor tomorrow. I want this shit to stop.
 
Update: saw the doctor. Told me to use Muro 128. Used it. Had an erosion the next day. Had to leave work early to go see doctor because of pain in my eye. That Muro can go fuck itself. My abrasion is the worst it's been. I have to do antibiotic drops and I'm getting drops for the pain but our insurance messed up and I haven't gotten my new card so I'm coming out of pocket 100 bucks...I love this shit...

Sorry for bumping just had to rant.
 
Fuck it. For those that are tired of my rants, I am sorry but this shit is no joke. This weekend I couldn't open my eye and had to have a doctor on call come in on Sunday to patch my eye closed and give me pain pills. Yesterday was better in that I have a bandage contact lens in my eye so I am at least not in pain anymore. Problem is that my abrasion is 4-4.5 mm x 4-4.5 mm wide. And it's in my pupil now. I can't see shit and all the things I love to do hobby wise I can't do. Hell I can't even work this week.

This is the first time I've been on Gaf in days and all I want to do is let people know how horrible this fucking condition is.

If you ever have issues with your eyes see an eye doctor immediately. The thing that bothers me is that none of them will admit the Muro could have made my eye worse when that is literally the only thing I did different since I had the issues.

I'm grateful to the doctors but I'm still not happy.

To anyone that reads these, thank you. I've bitched enough to family, friends and my poor wife, but until my life is normal again...this shit is maddening.
 
Sorry to read about your troubles OP. I am really glad that my eye prescription is really light and that I haven't had many issues with it. I've never liked the thought of putting something in my eye (contacts) so ever since it became an actual issue i've had glasses.

I'm sure there's something that can be done, OP. I don't know much about your particular condition but somewhere out there there's gotta be something you can have done that will help.
 
Well right now all I have is time. This contact lens has been a life saver for sure. I just keep hoping next time I wake up all will be well again. Thank you for reading.

I really wish I could game right now...lol
 
Update.

I had laser surgery on my eye today. This has been one hell of a year. I've been to the doctor 16 times since I first posted and I hope today starts the beginning of the end. Just wanted you all to know.
 
I have this now for 3 weeks, maybe longer. And it fucking sucks and i can't believe some are dealing with this for years! Please some updates and more tips would be helpful.
 
Just want to add the solutions I've found that work for me.

-Keep yourself hydrated, especially before going to sleep. Eating something before bed helps too, just make sure it isn't salty.

-Using a humidifier helps too

-Eye drops, saline solution whatever helps too. I keep my solution right beside my bed and pour it into me eyes right as I go to sleep. Usually I sleep on my side but with this, I am trying to sleep on my back so the liquid stays in me eyes more.

-Days in the sun are often bad. So is a draft. Driving on the freeway with your windows down is a killer.

Anyway, these helped me but I hope once my eye heals that I won't have to take all these precautions for the rest of my life.
 
Eye drops are the lifeblood and don't sleep with a fan on. For me, cooler temperature while sleeping is all good.

I had surgery finally but it didn't fully fix the problem.

Make sure you see an opthamologist.
 
I've had issues with my eyes since I was 18-19(for the last 11 years). Nothing as severe as what you are dealing with though.

I've seen five eye doctors over the years and to me it seems there is a huge gap in competence. Only one actually did me any good and that was during a trip to japan, so I couldn't keep seeing him... Even now I don't even have a proper diagnosis for whatever I have.

It started the same day I flew to norway to work there for three months during the winter. I think I must have caught something on the airplane because my eyes started itching even the same day.

Every day during the whole stay I would wake up feeling fine and fresh in my eyes, then after being up for about 7-8 hours my eyes would start feeling grainy as if I had grains of sand stuck on my eye that would scratch against the back side of my eyelids. looking in the mirror I could clearly see small grains looking like glass on and around the cornea. these would get increasingly painful and irritating until after a while they'd start floating on the eye and then proceed to separate as a thin white film and leave the eye. by that point I'd usually have multiple of these on my eyes though and nothing but sleep would help clear my eyes. since I worked 12 hours each day(for seven days straight, then free for five days) I usually had to muscle through it for 4-5 hours every day. By the end of each shift I could barely control my eye movements, with involuntary spasms of my eyelid and intense pain. I definitely had fantasies about grabbing a spoon and scooping my eyes out.

Regrettably even though there was a hospital at the island, the only eye doctor working there was inexperienced and unable to help me. He must have performed like 10 different tests and put me on 5-6 medicines.

The three months working there was just pure torture having to go through the same shit every single day while co workers thought I was half faking it. At the end I even took sick leave for the last week because I couldn't endure it anymore.

When I came back home it magically disappeared. Afterwards it would pop up from time to time again, usually during summer when my allergies are getting bad. I went to see eye doctors but they couldn't figure it out. To them it seemed like an allergic reaction but they couldn't explain why it sometimes only showed on one eye, and why I had it during winter in norway but only in summer here in sweden..

Anyway a few years later I went to japan and the problems came back during the trip. So I looked up the nearest eye clinic and just went there. Luckily the doctor running the place was a real bro who examined me within 15 minutes and didn't even charge me anything for the check up. Unlike the swedish doctors who would stick needles into my eyes, or turn my eyelids inside out and mop the backsides with cotton swaps he just filmed my eye with a digital camera and then examined the footage on his pc. He diagnosed it as some kind of bacterial infection between my cornea and sclera, that got worse when combined with allergies. If I understand it right the glass looking grains would be accumulated dead waste that was stuck on my eye. He gave me some medicine and for the first time like a miracle it actually helped.

Unfortunately I couldn't see him again and they didn't have the exact same medicines here in sweden so my treatment wasn't as effective after coming back, though still better than before.
The medicines kinda stopped working properly after a while though, but the frequencies of my eye issues had also decreased and maybe two years ago they stopped completely. Then last fall I started having some other issue. My eyes would have these inflamed red patches all the time starting from when I wake up in the morning. sometimes almost all of it would be red. it doesn't impact my vision or hurt that much but it makes the eye sensitive and it looks disgusting like I'm some kind of sick leper. luckily a few drops of steroids quickly takes care of that and it only seem to happen for a few weeks every 3-4 months or so. to my understanding it's some kind of chronic inflammation that shouldn't be too dangerous.

sorry for wall of text, just wanted to share. it truly sucks when your eyes are impaired.
 
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