Message to Cindy

[liz56]

Dear Cindy,

I read this post of yours, and it is an inspiration to me. I am going print up your story and keep it in my desk drawer for when I feel down.

This is the post to which I am referring:

I gave up ointments in Feb. '02. I had used ointments from May '01 - Jan. '02. Dr. Holly almost literally held my hand for the entire month as I made the switch from ointments (Refresh PM and Muro 128 ointment) to Dwelle (available in the DEZ Shop) at night. I had a condition called EBMD (Epithelial Basement Membrane Dystrophy). My epithelium was loose and flimsy and parts of it tore off every morning when I opened my eyes. It took a month of using Dwelle and babying my eyes before I awakened without erosions. Dwelle succeeded where ointments had failed...Dr. Holly was right.

I won't make any claims of being 100% comfortable 100% of the time and I still have to be careful but I haven't had an erosion since Feb. '02 or the problems like I used to. I still use Dwelle at night and NutraTear during the day.

Cali Girl, I remember that 'full' feeling. I still occasionally get it but it's pretty rare. I think there are cycles of discomfort...could be season changes, too much computer time, the color of my socks ...etc. I don't try to figure it out anymore. I just ride it out with comfort measures and rest my eyes more frequently.

How often do you use NutraTear?

Cindy, your story gives me lots of hope. I was wondering if whether or not I would be able to manage my EBMD with drops after my cornea heals up. I am taking drops five times each day, and the erosions have stopped (none in three weeks!).

My epithelium, like yours, is very thin and damaged after having RCE's over the course of several weeks from May until the end of June.

Can you tell me some details about your routine. I aspire to using Dwelle(TM) at night (or through the night) and maybe some Genteal Gel. However, the thought of surgery is scary to me. Did you ever have surgery or did you just fare well with drops?

Thanks, ever so much, if you happen to respond to this message.

Best wishes,
Elizabeth

[Lucy]

Elizabeth, Cindy may be away for a week or so. It may take awhile for her to read your post and answer.
Lucy

[liz56]

Thanks, Lucy!

Elizabeth, Cindy may be away for a week or so. It may take awhile for her to read your post and answer.
Lucy

Thank you for responding, Lucy. Do you have any advice for a sufferer of recurrent corneal erosions, due to EBMD? I never had lasiks, though an ophthalmologist I saw several years ago said that I'd be "a good candidate." I'm glad that I did not listen to him.

[Lucy]

Do you have any advice for a sufferer of recurrent corneal erosions, due to EBMD?

I have EBMD--but will let Cindy tell you what you've asked her.

[Cindy]

Hi Elizabeth,

I use NutraTear 5-10 times/day and at least once in the night... when I get up to prowl the house, see if the teenager is home (pace the floor if he's not), get a drink of water etc.

I don't use Dwelle anymore except for the rare occasion when my eyes feel really, really awful. NT does the trick for me most of the time.

I truly sympathize with people experiencing erosions. It's simply an awful thing to go through and I'm glad it's turning around for you.

My routine is fairly simple now: daily lid massage following some sort of applied heat to my lids (either in the shower or with a rice baggy), NutraTear at reasonable intervals throughout the day, Omega-3 supplements and a reasonably healthy diet. The biggest changes I have made recently that have really (!) paid off are 1) very limited computer use and 2) at least seven hours of sleep every single night. I have not had any surgery for my EBMD.

I have just returned from a week's vacation in Ogunquit, Maine. I love being at the ocean on the east coast. This is my third 'ocean' vacation since my LASIK in 2001. In Cape Cod and Maine, my eyes don't bother me one bit . It's such a welcome reprieve.

Welcome, Elizabeth, to Dry Eye Talk.

[liz56]

There's Hope!

Cindy,

Thank you for responding to my message. I'm really glad to hear that you were able to work through your erosions and EBMD and have lasik, too. I'm really happy to hear that you were on vacation. When Lucy said that you would be out for a while, I was afraid that you might be having a second or third try at PTK or something that I've been dreading. (That's the kind of effect that this experience has had on me.)

Your routine sounds a lot like what I already do. I'm 40, eat well, exercise an hour a day, am in great shape otherwise, and when this happened, it threw me for a loop. I will gladly increase my salmon consumption! But, seriously, your point about the supplement is well taken. The computer usage will be hard for me, because I teach and often grade papers on screen. I'll see what I can do to limit it or to blink more and take more breaks. I also always got lots of good, solid sleep until the middle-of-the-night erosions took over. I just started sleeping in the bed again (rather than in the recliner), and I got eight hours last night, getting up to put in Genteal about two times. When I get up, I have a feeling like there is a scab in my eye that had the erosions. I'm concerned about it, but maybe it is healing up?

I have some Dewelle and a great mask that I got from Rebecca for whenever the a/c is running (or for use in the winter when the furnace is at work).

Your mention of lid treatment and heat speaks to me, too. Before this happened, I would enjoy holding my face under a warm shower spray with my eyes closed. It always made me sleep better and made my eyes feel better (since I had an inkling something was amiss even before the erosions). However, since the erosions, I have been afraid to touch my eyelids or my eyes. So, maybe in time, when I heal up, I will be able to resume the routine.

I'll be ordering NutraTear.

Thanks, so much, for replying. I have been trying to find someone who had this experience and had coped with it beyond just a few months.

Many thanks to you for taking the time to write back.

--Elizabeth

[Cindy]

thinking and remembering

Elizabeth,

I've been thinking about and remembering how I managed my recurrent erosions while they were at their worst. The most helpful tip I was given, that I still do, and that I'd like to pass on - now that I'm thinking of it - is to keep a glass of water by the bed. Dip your fingers in it and moisten your eyelids before even attempting to open your eyes in the morning. Let the moisture seep in, then gently open your eyes. It takes some practice and discipline to get used to doing it but is worth it to me. It's second nature for me to do this and I can't believe I always forget to mention it.

[liz56]

Cindy,

Thanks for mentioning this. I have had experiences before the erosions when I would wake up and feel my eyes completely stuck together. A couple of times, I shot up and rent them open, but usually, I would just massage the uppermost part of the top lid, and I was surprised that I did this naturally, even before my first corneal specialist told me to do it.

I'll try the water and try to discipline myself. Since I have been setting the alarm every three hours, my eyes are not sticking. However, I know that they may at some point, so your suggestion is a really good one.

I was hoping that I could get away from the problem of the eyes sticking, but that may be too much wishful thinking.

Thanks,
Elizabeth