First Corneal errosion experience

[ljkq]

Hi! About 3 weeks ago, I started experiencing "stabbing eye pain" in the middle of the night- that was the best I could define it. It felt like a piece of glass was in my eye. For the first few nights, it subsided within about 15 minutes, although it was very painful for that time. Night by night, it got worse, and took longer to subside, and started happening twice a night, usually after about 3 hours of sleep. Eventually I went to the emergency room.

I researched on my own and found this site, and others, with people with a similar story, so I'm convinced I have RCE. Or possibly one episode of corneal errosion that's been flaring up every night for these three weeks.

The emergency room doctor saw a small abrasion on my eye, and I was referred to an opthomalogist who said the same. They didn't think that the pain I was describing should be coming from such a small abrasion, and thought I should look into migraines or cluster headaches, which was kind of disheartening because I feel quite sure it's my eye, and desperately want an answer and solution.

So, I'm continuing my research and trying to find treatments. I've found some relief with LacriLube, and my latest strategy is setting my alarm so I don't sleep for longer periods.

It's not ideal, because I would love a full night's sleep, but I'll take a little wake-up over "S.E.P." In the last three weeks I had various things happen in the night that woke me up (my toddler was fussing, my store window was broken and the alarm company called me in the middle of the night etc.). On those nights I had no (or very little) eye pain. I felt ripped off that my sleep was interrupted on my few pain-free nights. Then I realized - did I have a pain-free night because I was awakened?!

So two nights ago I tried setting my alarm for 2am (3 hours after I went to bed) and got up for about half an hour, put in more Lacrilube, blinked etc. then went back to bed. I had a small episode of minor pain around 6am, but my second night (last night) I had a pain free night (and was able to fall back asleep more quickly).

Has anyone else tried sleeping in shorter shifts?

Thanks to everyone who has shared their RCE stories. It has given me a lot of information about this condition, and in many cases, a lot of hope that things can improve. This is sure bizarre and painful, so it's nice to know, at least, that I'm not alone!

[Teri]

sounds like RCE's to me

1. It definitely sounds like you are having RCE's. I guess I shouldn't be surprised (but I am!) that the doctors told you that "such a small" abrasion shouldn't cause so much pain. Most of the RCE's I had were small and healed within 30 minutes (some healed with in just a few minutes), but they were all excruciating, all the more so because they happened like yours, in the middle of the night, without warning.

2. I also resorted to waking myself up every three hours to add eye drops, and, yes, this worked to halt the erosions. But I became insanely sleep deprived and developed a serious insomnia problem that was very damaging to my health. Your body needs sleep, your eyes need sleep. (The sleep deprivation and anxiety over having these erosions in the middle of the night helped me spiral into a deep, deep depression that I am still struggling to get out of.)

3. Some ideas: Keep looking until you find an opthalmologist who will get to the bottom of why this is happening to you. The fact that it only happens at night suggests to me that it may be due to your eyes drying out while you sleep. (I'm not a doctor! Just offering my take on what you described.) You could try any or all of the following: a humidifier right next to your bed, use some non-preserved artificial tears a few times during the day (even if your eyes feel fine), try using a warm compress before bed, consider taping your eyelids closed at bedtime or using the eco-eye sleep goggles.

Be careful with the oil-based ointments. They did help my erosions, but the oil was bad for my eyes, and I'm convinced it made my blepharitis worse (which, in turn, made my eyes drier and the RCE's more likely).

Look at all of the medications you are taking. Last year, I took medications that didn't noticeably affect my eyes during the day, but my eyes would be bone-dry at night. Sometimes that was how the dryness manifested itself. Are you taking any allergy meds? Anti-histamines can be drying and are hidden in unexpected places (e.g. Advil PM and Pamprin).

I can't sleep with tape on my eyelids or with the goggles, so here's what I do to keep my eyes shut at night: I "glue" my eyelids closed with Genteal Gel ("severe dry eye"). I put a large glop in both eyes, blink a few times, and squeeze my eyes shut. Some gel leaks out, and I smear it around on my eye lashes. I don't open my eyes again until morning, and the gel dries and effectively glues my eyelashes together. This has worked for me.

I was told that my RCE's had "nothing to do with" my dry eyes. I was told that I had "dot-map-fingerprint dystrophy" and basement membrane dystrophy. I think that was a load of hooey. As soon as I found a good doctor and started effective dry eye treatments, my erosions stopped.

Good luck getting to the bottom of this (and I have every confidence that you will get to the bottom of it!). You have my sympathies.

Teri

[lisiamc]

I'm sorry this is happening to you. I would say that any doctor who suggests that you shouldn't have so much pain from such a small erosion doesn't know much about corneal erosions!

To help prevent erosions, I wake up every two hours to add more goop, and I cover my eyes with a strip of clingfilm to hold the moisture in, topped by a sleep mask to keep the clingfilm on! Normally I can't bear anything pressing on my eyelids, but the clingfilm is OK. Others have said that Glad Press 'n' Seal does a good job, too. I used to use the Tranquileyes goggles, and liked them very much, but I also like the low maintenance and cheapness of clingfilm.

I agree with Teri that ointments like Lacrilube may not be the best thing for dry eyes at night. Someone here compared it to putting Vaseline on the back of your hand - water just rolls off. If your eyes are coated with petroleum jelly, how is any moisture going to get through?

I hope you find something soon that works for you and stops the cycle of erosions. Best wishes for finding the right ophthalmologist, too.

Lisa

[liz56]

Hi,

I'm sorry that this is happening to you! Having doctors not really know what it is or what to do can be so frustrating. Don't give up. I wound up going to several, including two corneal specialists, before I got onto a program that worked.

Lisa and Teri have great advice.

I, too, resorted to sleeping no more than two or three hours a night. In about three weeks, I was going crazy from sleep deprivation. I felt so trapped.

There may be several things going on, EBMD, dry eye, and other things. So, try different drops, gels, dietary changes, and techniques (like compresses, goggles). It feels good to know that there are things that can help you to take control, since it is a powerless and scary feeling to weigh terrible pain and the punishment of reduced vision (results of erosions) with sleep.

There are ways to control them, so stick around the DEZ. There's lots of good advice.

--Liz

[ljkq]

Thanks...

Liz, Lisa and Teri. Thanks so much for all the great suggestions. It seems like there is a lot of trial and error to find a combination of therapies that work for each person. I was wondering about how a dr. goes about diagnosing RCE? I suspected the erosions healed up quickly, so by the time you see a doctor there's nothing to see. Often, in the day, my eyes have been quite fine too, so there's no evidence of the crisis that was going on in the night.

I had seen the ophtomaligist associated with the emergency room I went to which got me in more quickly, but I had planned to follow through with a referal from my family doctor as a way of getting a second opinion. I just got the appointment today, for March 23, 2009!

I guess my experience thus far with doctors is that if they can't see anything wrong, they don't take it further. I'm feeling like it's up to me to figure this thing out and try all these different ideas from the other suffers.

I'm going to continue sleeping in shifts for a bit. It's quite a glorious relief compared to the stabbing eye pain, but I'll try some of the things you mentioned as well, in hopes of getting things under control enough that I can sleep a full night.

Thanks for the tip about the oil based lubricant. I've been really gooping it in! I'm going to look for Genteal, and try that sealing shut technique. (Is GenTeal not oil based then?)

Thank you so much for your help and encouragement. I hope to report decent nights of sleep soon!

[liz56]

Hi, ljkq.

It took me a long time to be diagnosed. I had to keep going back, and, finally, I was told that I had RCE's. However, I also have EBMD, and even after five doctors, I only got that diagnosis from the first corneal specialist. And, he only saw it in one eye, when I felt like I had it in both. The doctors have to be trained to identify it, and that is the hang-up. A lot of factors go into why it is missed-- it is rare that patients show up with EBMD and RCE's; they are not trained to make it a priority; so many people live with EBMD and never know they have it.

Hang in there! Keep asking until a doctor can tell you what is going on-- injury, infection, EBMD. It could be a lot of different things or a combination of things.

--Liz

[Teri]

You are right: Genteal Gel is oil-free.

You can't get an appointment 'til March '09?? Oh no! That is too long to wait. Any chance you can get in to see someone else in the mean time?

As for diagnosing RCE's, it is tricky, and Liz is right. A lot of doctors don't seem to know what to look for. Unless you have a really huge one that takes a awhile to heal or you have an abrasion that sticks around, the doctors have to rely on your description. The first four doctors I saw didn't believe that I was having them, and, when pressed, seemed to think it was not a big deal since they healed so quickly. (!)

Please let us know how you're doing and good luck!

Teri

[bernmee]

Hi,

I was going to see my Lasik surgeon three times a week in tears before another surgeon at the offices said I was having erosions, the pain would stay for a whole day. On my first Monday 8m emergency three weeks earlier that same surgeon told me my cornea "looked angry"...what the hell does that mean.

Anyway the good news is that I had a Bandage Contact Lens in for about two week, and I stopped having major ones.

I switched Dr.'s and my new one said I was probably sstill having minor ones, and he put me on Doxycyline as it helps the eyeball bond back together. Since then I haven't been waking up in the night, and I know/hope my erosions behind me.

I learnt from having eye issues that the Dr. must listen to what you say regarding symptoms and not just look at the eye. I have also read on this forum that some people have "dry eye" but don't experience symptoms, others have syptoms but their eyes look real good. Just a thought...don't rule out "dry eye" because your eyes feel fine, maybe if you baby them during the day it might make a difference during the day...just a thought once again. Of course there are many other reasons for RCE.

I hope you get this cleared up because my short experience was very very nasty and my heart goes out to those suffering from them.

Good luck,

Bernadette

[ljkq]

Hi, and thanks so much for your replies!

I will keep trying other options to find a sympathetic doctor. In the meantime, I have been having access to the doctors at the hospital eye clinic, but you get a different one every time, so I feel I need to find someone who will be willing to work on this with me.

So far, my waking up every few hours is my short term solution. I know it's not a good long term one, but I think avoiding erosions however I can will lead to longterm healing.... I hope. The bandage contact lens sounds like a good possibility if things get as bad as they were some nights in the last three weeks, but so far the last four nights with my new wake-up program, things have been pretty OK.

I ordered the Tranquil-Eyes googles (I chose pink!) and the Dr Holly drops, so I'm going to keep trying new ways to get enough comfort built up where I can sleep all night.

I'm a little worried about overusing drops. Right now, during the day, I squeeze in as much "Tears Naturale" as I can, basically using it as a rinse. The Lacrilube gets me thru the night (in stages) but again, I'm really gooping it in. I'm going to get something else soon, although I haven't found GenTeal at my local drug store. I may have to order it online, I suppose.

I like your suggestion, Bernadette, about babying my eyes during the day to build up to get me through the night. But I am concerned that my "tears naturale" use may end up causing problems, in the same way that overwashing your hands can dry your skin..... any thoughts on the best way to take care of my eyes during the day?

Thanks again for all the support.

[bernmee]

Hi,

I'm including a link to a page that may help you get started.

http://www.dryeyezone.com/encyclopedia/diagnosis.html

I would recommend that you start taking 1000mg three times a day of Omega 3 oil. I think it is safe to say that it is the first place to start when dealing with your eyes. If you google this you will see it is recommended in all matters related to the eye.

Switch your eye drops over to preservative free ones, I don't think it is safe to overuse anything with a preservative in it. Yes the vials are more expensive, but when our eyes are in trouble you need to do everything to help, these can be used as often as you wish. As for anything that contains a preservervative, I was told no more than every 4 hours.

Genteal gel gets a thumbs up for me for night time use.

Drink lots of water.

Watch your diet, try to be a little bit more healthy then you already are.

if your air uis dry use a humidifier in your room at night.

There is a book by Dr. Robert Lathkany that is for sale in the dry eye store, or you could order it from your library...give it a read and you will learn alot about your eyes. I know you have not been told you have "dry eye" but it is good overall book explaining how the eye and tear film work.

As for the Bandage Contact Lens, all it is is a regular lens put in the eye and left there until your eye heals. It is not as exciting as it sounds and you don't have to be afraid of getting one.

I hope this helps. Once again I should say I am not a RCE expert, and mine was caused by Lasik rather than any other condition, so I can only give you simple pointers...but its the best place to start.

Keep rading other posts and you will keep getting ideas.

Best of luck and keep well,

Bernadette