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**liz56** · 07-Jan-2009, 06:18

Hi, kimsta5003.

It sounds like you might have self-diagnosed RCE's. Is that right? I'm sorry that you are suffering from them, if that's the case.

You may want to visit a corneal specialist who works with diseases of the cornea (rather than LASIK) to see if there is an underlying problem, like epithelial basement membrane dystrophy or something else. The first corneal specialist I saw only saw the erosion problem after it had ulcerated but never saw the problem in the other eye. So, even not all corneal specialists are trained to identify problems in the cornea.

It helped me know what the cause was, so I thought I'd mention it.

Best wishes to you,
Liz

**kimsta5003** · 07-Jan-2009, 21:38

Night Pain

Hi Liz,

Thanks for your response. What are RCE's? I did have a corneal abrasion several years ago in my left eye and ever since my eyes have never been the same. At one time was even on steroid drops to help heal my eyes. It is almost frightening to go to bed every night knowing I will end up with pain, but I am learning how to cope and do everything I can not to tear my eyes open and do damage to them. So, I walk blind, to the bathroom and dose my eyes with drops and slowly open my eye lids with my fingers. This happens almost every night between 2 and 4 am...it sucks!! But, if I am not careful, then I end up with exteme pain that lasts for hours, light sensitivity, and profuse tearing. Then the rest of the day I suffer at work where I sit under florescent lights and work on a computer...ugh! I am currently going to a corneal specialist at a Claris Eye Clinic. I may have to do some research to find another doctor in the event I have more going on than he has diagnosed.

**Lucy** · 07-Jan-2009, 22:16

Kimsta, until you see your new doctor, you might try keeping some eye drops or a gel such as Genteal Gel on your nightstand. If you can grab the drops and do them keeping your eyes shut, this will lessen the chance or causing an erosion. Cindy from this forum used to keep a glass of water bedside and just dip her finger in the glass of water and work her eyes gently open.

If drops alone aren't keeping you through the night, some of us use a gel and GenTeal has been a real favorite because it's not greasy like most of the other PM treatments.

You might also check out a night time sleep goggle called http://http://store.nexternal.com/sh...t=products.aspTranquileyes. I love mine and it's available from this website and also online from the manufacturer.

Lucy

**liz56** · 08-Jan-2009, 08:59

Hi, kimsta5003.

Lucy's advice is really good. The goggles helped me, finally, when I was ready to let something touch my eyelid. You might want to consider whether or not your lids close all the way when you sleep. I don't think that mine do, so the goggles help with closure.

RCE's are Recurrent Corneal Erosions. I have them due to a really old eye injury and a problem called epithelial basement membrane dystrophy (EBMD or ABMD, map dot fingerprint dystrophy, or Cogan's dystrophy). Dr. Holly understands this condition better than anyone on earth, so you may want to search his forum for information on it, if it turns out that you have it. Over 90% of people live their entire lives without knowing they have it. It is rare, but it may be more common but unknown to people who have it. It usually only is diagnosed after an episode of RCE's. In my case, several doctors (including a corneal specialist) had trouble identifying it. So, I asked doctors to look for it. Eventually, I traveled out of state to a corneal specialist who works in the area of diseases of the cornea, not LASIK, and he was able to identify EBMD in both eyes and treat me for it.

I am happy to say that the healing part seems to be behind me and that I appear to be in a management phase that has lasted since March 15, 2007. I, too, get erosions where I had previous corneal abrasions, due to contact lens care and a scorched cornea from overexposure to the sun, when I was a teenager (laying out before the melanoma scares).

I feel for you being awoken by erosions at night, if that is what is going on. It is terrible, unhealthy, and disruptive. I know what you are going through, and it is not easy. Your writing voice sounds quite healthy, though, so you must be a very strong person.

There is a good forum here on RCE's that you might want to look through. What helped me was finding posts on RCE's here at the DEZ and using the new vocabulary to run Google searches to learn more. That is how I found Dr. Mah, the corneal specialist in Pittsburgh, PA, who helped me.

Please contact me if you have any questions at all. I'll help if I can.

Best,
Liz

**kimsta5003** · 07-Feb-2009, 14:17

Pain at night

Thank you Liz and Lucy!

I truly appreciate your helpful comments and suggestions. I have a follow-up appointment with my regular eye doctor in a few weeks and will talk to him about my having RCE's (which I know now I do have after researching this website). I also plan on talking to him about ABMD. My night eye pain has really not gotten any better, as I still have "episodes" almost nightly--some being more severe than others. I'm still trying to find ways make my "night life" better (hee, hee, hee) by means of vitamins, eating eye nutritious foods like salmon and carrots and drinking plenty of water. I just now ordered Tranquileyes and plan on ordering Dwelle drops once the are back in stock. I also have a hunch I do sleep with my eyes slightly open. I have never had Lasik surgery, yet like Liz, did perhaps fry my eyes in earlier years, plus my job requires me to work at a desk infront of a computer monitor which only aggravates my condition. I'm also considering buying some computer glasses to help with eye strain. Thanks again for giving me help and hope

Kim

**liz56** · 07-Feb-2009, 16:41

Hi, Kim.

I'm sorry that the frequency of your erosions is so often. It is a frustrating problem to have, but your voice sounds really positive, and that will help you with this condition.

If your eye doctor cannot tell if you have ABMD, try and find a corneal specialist who can understand what he or she is seeing. I had several doctors look at my eyes, and one of them was a corneal specialist. None of them detected ABMD, except the corneal specialist, and even he did not see it in my other eye, which was not giving me problems at the time. It was not until I visited a seventh doctor and second corneal specialist that I got what I needed in terms of diagnosis and treatment. I'm just letting you know this, in case you hear thing from them (like, "It looks fine to me"), and you feel otherwise. Many corneal specialists are not trained well to see this condition.

If you feel like experimenting, you might want to try Muro 128 5% eye drops, until Dwelle comes in. The Muro is more expensive, almost twice as much as Dwelle, and it kind of burns. It is mostly a salt solution, and it draws the moisture out from behind the epithelium of the cornea, helping it to "stick" down to the basement membrane more effectively. It helped me to get past the nightly erosions, until I managed to find a doctor who really helped me. The corneal specialist whom I saw tells people to use Muro drops in the morning, one drop in each eye, every five minutes for fifteen minutes. He says that it helps the erosion site to heal up through the day. It might be worth a try, anyway. Muro 128 5% is available over the counter in any grocery or drug store. It is usually about $20 / 1.5 ml bottle.

I hope your doctor can help you!

--Liz

**kimsta5003** · 22-Feb-2009, 13:00

Night Pain

Hello...

Well, I had over a week without eye pain after I started using the Tranquileyes. My eyes were finally starting to feel slightly better and even less "sticky" feeling during the day. I felt as though my situation was finally getting under control...until last night.

I had several small episodes and then one big one in both eyes around 7:00 AM, just as I was beginning to wake up. Thank you Liz

for your suggestion to use the Muro 128-5% solution (3 times every 5 minutes-AM). I was lucky to have the Muro drops here at home as the first doctor I saw told me to use them perscribing one drop every 4 hours through out the day. He is also the one who said I had a corneal abrasion and it would take some time to heal. This was back in April of 2007. At that time this doctor also said that I had some areas of the epithelium that were not sticking. He told me my eyes were like a peanut butter sandwich where some of the peanut butter was coming out of the bread. My pain at that time was not as severe as it is now.

I'll be seeing the corneal specialist this week, I've been going to him now for about a year, and will definately bring up ABMD. I will also share with him other treatments I've been doing since finding this website (rice bag, tranquileyes and Muro drops). And yes, he has been saying, "They look okay." Ugh! I will most likey be asking him for a referral to a another specialist if he cannot diagnose ABMD.

Are the Dwelle drops the same as Muro, or different? I have not ordered any yet and wonder if I should or just try the Muro for now

Thank you again for coming to my rescue with more ideas/options for treatment. I'm willing to try just about anything (within reason ;-) to get my eyes healthy again. My biggest fear is to live the rest of my life with this issue!! I'm only 52 and feel and look as though I've already aged 5-10 extra years because of this problem...

Kim

**liz56** · 22-Feb-2009, 15:11

Hi, Kim.

I'm so sorry about your last episode. Boy, did that sound familiar. The small ones are light enough to think that they might be the last of the night, and, then, another, and, then a terrible one. That happened to me one night, and the terrible one was at 3:45, and I was in serious pain for an hour and fifteen minutes and could not go back to sleep. I completely feel for what you are going through. Mine started in 2007, the year I turned 40, and you describe it so well. I felt decrepit, and everyone was telling me that I was so young. It sure did not feel like that.

I'm not sure how often you will be able to get in to see your doctor or how much help he can give. I had the kindest, most well-meaning person helping me, and taking me in at the drop of a hat, and he still could not see my ABMD. So, I have some suggestions in the meantime, just in case you do not get the resolution that you need soon enough. Keep using the Tranquileyes, and use Genteal Gel with them at night. Get your Muro drops in about fifteen minutes before you go to sleep, then put in the Genteal Gel and don your Tranqileyes. Keep up the routine for at least six-eight weeks, even if you start to feel better.

On Dwelle, Dr. Holly posted on your question. I'll look it up.

Hang in there,
Liz

**liz56** · 22-Feb-2009, 15:15

Here it is:

http://www.dryeyezone.com/talk/showthread.php?t=4908

--Liz

**kimsta5003** · 22-Apr-2009, 18:52

Night pain

The good news is that my eyes do seem to be getting better. I've been faithfully using the Muro drops and the Muro ointment at night with my Tranquileyes. I stopped using the pads moistened with warm water. They were too tight on my eye lids and put too much pressure on my eye sockets. Some mornings I can actually open my eye lids without having to pry them open with drops and my finger tips.

I did get my doctor to confirm I have ABMD in both eyes. I was not surprised. When I asked for a treatment that would cure my eye problem, he told me at this time there was none. He said keep up what I've been doing and he'll check my eyes again in two months...ugh!

So, with that not such good news, I did more research and discovered there could be some success for me with alternative medicine. I found an acupunturist in my local area who has had success treating the eyes. After two treatments, he was able to get my right eye to moisten to the point that I had an actual tear run out the side of my eye. Wow, that felt good

He also has me taking a vitamin cocktail for eyes. Lutein, Grape seed extract and Astaxanthin. I figured it couldn't hurt, besides, he mentioned after taking it himself for several months, the "floaters" went away in his eyes.

Also, I now wear corrective lenses at work that are tinted to help with the glare off the monitor. I have noticed significant lessening of eye fatigue by the end of the day. My co-workers give me grief for my "cool shades" but I ignore them

I will order the Dwelle drops as soon as they become available again. I hope some of these ideas might help you too--especially if you are open to alternative medicine. I believe modern medicine has it's place/purpose but is not the end all for everything!

Thank you again Liz for all your suggestions and encouragement. You have been a great help and kept me from going crazy

Kim

**liz56** · 22-Apr-2009, 20:14

Hi, Kim.

I'm glad to hear that you are finding the best management options for you.

Like you, I am on the edge of my seat, awaiting word that Dwelle is back in stock! Rebecca has been great about keeping us posted.

I never experienced photophobia until I started getting RCE's. I am happy to report that a year after my last one, my sensitivity to light is not as extreme as it had been. So, if you can keep managing your erosions, that is something that may improve.

Have you been able to stave off the mid-night erosions? I noticed that getting beyond that was a sign that things were improving.

Thanks so much for the update. I often wonder about people and how they are doing, so I am eager to read updates. Also, it helps so much when we are new to this to hear people's stories about how they cope. I was so relieved to know that people could actually live with this problem and that my life did not have to stop!

Take care,
Liz

**kimsta5003** · 25-Apr-2009, 18:44

Night pain

Hi Liz,

My mid-night erosions have been less frequent as well as less severe. I'm having about one a week that is moderate to slight. I have not had a dibilitating RCE for over a month. I'm recording them on a calendar. I have a check up with my eye doctor in late May, so I'll be curious to see if he sees an improvement.

Once I get the Dwelle drops, what do you suggest for usage? I think your suggestion to use the Muro in the am every 5 minutes has helped as well as 15 minutes before bed.

From your experiences/knowlege do you think it's possible to have ABMD go entirely away with treatments, or is this something I will have to endur the rest of my days...? Just curious.

Thanks again for your response to my message--I appreciate your advice

Kim

**liz56** · 26-Apr-2009, 08:20

Hi, Kim.

I'm really happy to hear that the erosions have lessened as much as they have.

I have used Dwelle during active erosions and for about nine months after erosions by using them every four hours every day. I also used them before I went to sleep and in the middle of the night, if I happened to awaken. Once I was well past the erosions (though the dry / "menthol" feeling never really went away) I used it about every five hours. I am very much looking forward to it coming back into stock!

From what my doctors have told me, ABMD is cyclical. It comes and goes and gets very bad at times and then can be gone at other times. It is non-progressive, which is good to know, too. So, you may have it lessen and go away and stay away for years. You may have to manage it for years. It really depends on your situation. I feel like I still need to manage it, though there are some days when it seems like I do not need to do so. I really don't trust those days, because my eyes never feel like I cannot think about them. They are always dry.

I wish you continued success! Thank you for the update.

--Liz

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