Just found this site today - need some help

[iamlestat]

Hi All .. I was fortunate enough to come across this site today and am so very happy to have found others with whom I can share my DES problems and hopeful get and give some help.

I don't have a history of eye problems. It started for me about a year or so ago, just as I was turning 40. From reading threads on this site, I am guessing I have lagophthalmos? My main problems are as follows: (1) many times over the past year I would awake in the morning to sever pain as my eyes first opened, evidently from my eye lid (right only) sticking to my eye and then tearing my eye upon opening (2) this tearing seems to have permanently scratched/scarred my eye as my right eye is always blurry now, more so just after an episode (3) I had a local optometrist who noted some deposited on my right eyelid, and later an eye specialist commented that he didn't think they were contributing to the problem?? (4) I have had a few very severe episodes during the day while shopping and such, which might indicate that I have something other than lagophthalmos?

The way I have been handling it at this point is I have been wrapping my eyes in an ACE bandage and sterile pads at night before sleeping so that I cannot suddenly open my eyes in the morning. This has helped so far, though it might not be the best solution? I am sitting here in pain now as I fell asleep Sunday night without wrapping and woke up at about 1am to a sudden burning tear as my eyes opened. Many times, the pain will subside withing 6-8 hours, but this one has lasted from Sunday night to now, Tuesday night. The pain is less than it was initially, but it still stings/scratches when I blink. I am thinking about trying Tranquileyes?

I live in the Atlanta GA area and wanted to know if anyone can recommend a good doctor (specialist) for this condition? I went to an eye clinic in Atlanta (to the tune of $145 for the initial visit) about 6 months ago and he seemed very nonchalant about the diagnosis. I went through some standard exams by the assistants (30 min or so) and then was in the Doctor's office a total of maybe 5-10 minutes. After hearing of my background problems, he said it was simply dry eyes, and that the deposits on my eye lids were not contributing to the problem, and that I should try Refreash Drops and Refreash PM for a few months and if that didn't work he would "perform surgery" to strengthen my eyes?? I never went back and have been skeptical about going to anyone else as this seems to be something that would require some sort of dry eye specialist?

Thanks in advance for any insight and/or advice.

[Rebecca Petris]

Hi and welcome to DEZ!

(1) many times over the past year I would awake in the morning to sever pain as my eyes first opened, evidently from my eye lid (right only) sticking to my eye and then tearing my eye upon opening (2) this tearing seems to have permanently scratched/scarred my eye as my right eye is always blurry now, more so just after an episode (3) I had a local optometrist who noted some deposited on my right eyelid, and later an eye specialist commented that he didn't think they were contributing to the problem?? (4) I have had a few very severe episodes during the day while shopping and such, which might indicate that I have something other than lagophthalmos?

Whatever the cause it sure sounds like you're having recurrent erosions and it sounds like they are escalating pretty badly at this point and need to be brought under control. Lagophthalmos is a possibility but not the only one and it may only be part of it.

There's only so much you can do with self-care when it gets to the point you describe... Wraparound glasses by day; by night Tranquileyes, good strong lubricant, warm compresses, maybe Muro 128 ointment? Bandage contact lenses? (See threads about this by Prattstar and DrG.) If you can't get a specific doctor recommendation from someone here I'd just find a big local ophthalmology practice with a corneal specialist on staff and push hard to be seen when you're in the middle of an ongoing episode if possible.

[Rebecca Petris]

After hearing of my background problems, he said it was simply dry eyes, and that the deposits on my eye lids were not contributing to the problem, and that I should try Refreash Drops and Refreash PM for a few months and if that didn't work he would "perform surgery" to strengthen my eyes??

I'm guessing by surgery he meant debridement of the epithelium (or was he talking about tightening the lids?) which is sometimes done for recurrent erosions when nothing else works. There are other things to try first though.

[iamlestat]

Thanks!

Thanks so much for your responses Rebecca! I was at such a loss as to what to do. I have never met anyone else in person who was suffering from DES and was not particularly happy with the response from the eye specialist that I visited. He did not mention what kind of surgery, only that it would be to "strengthen my eye". Needless to say, I wasn't very happy with the help (or lack thereof) that he provided and at $145 per visit I figured I would just try to research this and handle it myself. I will see if I can find a local specialist based on your advice, if no one else on this board comes with with a particular name. I ordered a Tranquileyes package last night, so I am excited about that!

[calli66]

Hi iamlestat,

A suggestion about night-time inadvertent opening of eyes:

I have not had corneal erosions, but for my dry eye I use LOTS of Genteal Gel plus Tranquileyes at night. The gel doesn't really keep my eyes moist all night---I have to reapply. BUT--it usually makes my lids stick together closed (the lashes stick), so that I have to add some liquid drops along my lashes and lower lids to get my eyes open--before I can even apply more gel.

Have you tried gel at night?

C66

[Rebecca Petris]

It's a tough thing to deal with and unfortunately often gets dismissed by doctors especially if there are not any major-league clinical findings at the time you visit. It can take some trial and error (unfortunately no shortcuts and it can get expensive) to get a good doctor to really pay attention. But treatment really is vital - uncontrolled RCEs can lead to ulceration.

If you ordered the Tranquileyes from us it will come with a sample of Dwelle, which a lot of people have found useful for RCEs so you may want to give that a try in the meantime as well.

Hang in there!!!!

[iamlestat]

Thanks C66, I will try the Genteal Gel with the Tranquileyes when it arrives this Saturday. I didn't mention before, but I have been using Refreash PM Gel with my ACE bandage at night. I am not sure if I really need the Refreash PM but have continued to use it anyway as it seemed like a good idea. Before deciding on the ACE bandage, I did try Refreash PM alone, upon the advice of the afore mentioned doctor, but it did not fix the problem as I still had the tearing upon awakening.

I did order the Tranquileyes from your site Rebecca, so I will give Dewelle a try and hope for the best, thanks!

I want to pose one more question if I might? Regarding the tearing upon awakening .. since deciding on the ACE bandage and Refreash Gel combo to prevent my eyes from opening suddenly it has not happened with the bandage on, however I have occassionally fallen asleep without bandaging my eyes closed (late night watching TV for instance) and sometimes I have come through ok, and sometimes not (this past Sunday night being a "not")? This past Sunday night I only dosed off for about an hour or so and woke to sudden horrible pain. Does the fact that I have sometimes made it through a night without aide or incident and sometimes not lead in any specific direction, or away from any? Also, does the fact that it only took a 1 hour "nap" this past Sunday night to produce one of my worst episodes indicate anything specific?

Thanks in advance for any and all help and advice, this site is terrfic!

[skygoddess]

Hi,
I live in Atlanta and I go to Emory Eye Clinic at Emory University. I have seen almost every Dr. there at one time or another. They are all good Dr.s.
I like the fact that they are a teaching hospitial.
I have insurance, so I am not sure of the cost .

[Elegiamore]

Well, I live in Atlanta also and have seen a cornea expert, Dr. Lee, with Eye Consultants of Atlanta....but when I saw him for a cornea erosion, he really didn't do too much to help me. I had the treatment where the tissue is removed and a new cornea spot allowed to heal over - it worked in my case.

I already had dry eyes from perimenopause and autonomic nervous system damage at the time; I got bottom plugs and after I healed, I seemed OK.

Until this fall, when the same eye became dry. I haven't seen Dr. Lee about this yet, but I'm thinking about it.

Skygoddess, thanks for clueing us into the Emory Eye Clinic. Don't know if they are available on my limited insurance plan.

Good luck - maybe our humid summer will help your situation.

Best wishes,
Elegiamore, in Metro Atlanta