Hello!

[yeouch]

Hello! I'm glad i found this site..

A little background info, the eye.. about 4 months ago I had an accident, I had a corneal ulcer, which got infected... subsequently became dry after the incident.. but it has healed since. I was doing fairly well, but about two weeks ago, I'm not sure if it was the wind or the weather, I have no clue, other than to say both eyes were affected by some type of allergen.. instead of subsiding the left eye became extremely painful, any wind, air conditioning.. it was unbearable.. I had been using refresh drops prior, but they didnt help.. Thats when I decided I had better go to the emergency, the pain was intolerable in my left eye and I could barely keep the eye open, the Dr told me he didnt see anything it was red and irritated, but he didnt think it was an infection.. it was probably allergies, gave me some over the counter drops, and told me if it didnt improve to see the opthamologist..

Two days later, I went to see the opthamologist, she told me my eyes were dry and that it was probably allergies.. she gave me sustane preservative free drops and gel, however they are inneffective, whenever I drop them into my eye, I feel that same intense throbbing pain, stinging, and burning, it does not give any relief, it almost makes it worse. I decided not to use these drops, instead opting for heat compresses.. A few days have passed, I'd say I've improved somewhat, I can open my eye now, however.. I still have this throbbing pain in my lower eyelid/eye.. close to my nose.. I'm not sure if this is dry eye, my eye produces some tears.. but this intense burning/stinging sensation, and as of late, Ive noticed a tingling numbness down my cheek and neck.. so my question is, with dry eye, does the pain spread say down a nerve or something? why would I feel numbness.. its a strange feeling on just the left side.. .. I think Ive answered myself.. I had better go down and get a 2nd opinion..

[Rebecca Petris]

I'm not sure if this is dry eye, my eye produces some tears.. but this intense burning/stinging sensation, and as of late, Ive noticed a tingling numbness down my cheek and neck.. so my question is, with dry eye, does the pain spread say down a nerve or something? why would I feel numbness.. its a strange feeling on just the left side.. .. I think Ive answered myself.. I had better go down and get a 2nd opinion..

This is a shot in the dark and I may be way off BUT my sister went through something similar recently enough that I have a little suspicion of one possibility: Shingles. If that's what it is you would want to get on an antiviral fast. (I think my sister was misdiagnosed twice first. And she's got a history of recurring iritis which made her think in that direction first.)

Other than that, there's the neuralgias, which I can never keep straight, is it trigeminal neuralgia I'm thinking of?

I think if it were me, I'd be trying to get in to see a neurologist. Not trying to scare you, I'm just thinking of what I would want to rule out under these circumstances.

[Rebecca Petris]

I was just re-reading this, a little more carefully this time (sometimes I notice one thing more than another) and was thinking about your history. Another possibility that I was thinking of - before the facial numbness etc made me think of my sister - might be RCE because it's pretty typical for that not to start until some months after the injury. It's not always an easy diagnosis because by the time you get in to see the doctor there's no obvious signs on the corneal surface. Also, I think that we have some members here, or at least we used to, who have facial nerve problems that are often triggered by eye pain i.e. if their dry eye gets out of control or if they get an erosion.

Just food for thought. Guess my main question would be, is this a nerve issue that's affecting your eyes, or an eye issue affecting your nerves?

[liz56]

Yeouch.

I think that you are wise to seek out a doctor who can confirm what is wrong. That's easier said than done, but it's worth trying.

You mention a corneal ulcer. And regarding Rebecca's reply, I had one that developed when my erosions got out of control, and I don't know if it was lack of sleep or pain, but I was getting shooting pains in my jaw and teeth. When I did sleep, perhaps it was so stressed that I was clenching. I cannot say. However, looking for answers from a general practitioner and corneal specialist both seem to be in order.

Let me know what you find out, and I hope that you get it cleared up soon.

--Liz

[yeouch]

An update, the good news; intense pain has gone, my eye has reverted back to being as dry as it was before and refresh works as it should. Not sure if this is bad news, as I've been given two weeks.. if the numbness/strange sensation/tingliness I am experiencing does not go away (which is affecting half my head/neck/and face... then Im in for an MRI. I'm hoping these symptoms will subside..thanks

[yeouch]

..im back.. two weeks after I had gone to the doctor, the numbness disappeared.. I thought its all gone and better.. Until just last thursday, I started having what I believed to be an allergic reaction [again], (I didnt connect the dots until tonight).. initially both eyes were affected.. they would water profusely as if there were an irritant in my eye, then I started having a yellow discharge in the morning when I woke.. itchy/burning/irritation.. and now my left eye is even more pained, and starting to burn up again like before, tingly burning sensations on my cheek and chin.. accompanied by headache this recurrs! the only difference is that both eyes are affected, though my left is much more painful.. I spent all day sleeping yesturday.. im starting to get depressed..

I'm going back to doctor today, if i can get an appointment.. that or ill just walk-in.. but that leads me to question - what does eyestrain feel like? I know what a minor eyestrain feels like, from reading or watching too much tv, but the pain im feeling is about 20x magnification of that.. I can't seem to tell if what Im feeling right now is eyestrain or something else.. it feels as if there were some string attached to the backsides of the eyeball and it is slowly being torn but doesnt quite tear..... instead this is driving me to insanity, when I close my eyes, there is minor relief, im having the hardest time describing this sensation.. its effecting both eyes.. along with all this pullling sensation.. and i have poor eye movement its painful.. headache .. im surely going insane

[yeouch]

OK the diagnosis is in.. RECURRENT CORNEAL SOMETHING..EROSION!! what to do..

[liz56]

OK the diagnosis is in.. RECURRENT CORNEAL SOMETHING..EROSION!! what to do..

I'm so sorry to hear that this is the problem. I was hoping it was something else. Did your doctor give you any indication at all about what is causing it?

If it is happening in both eyes and you do not have injuries in your eyes, it might be a corneal dystrophy.

What did the doctor recommend for treatment?

On the bright side, you are in the right place. The DEZ helped me through the RCE's and is still helping me to manage my corneal dystrophy, which goes by several names: Map-Dot-Fingerprint Dystrophy, Cogan's Dystrophy, Epithelial Basement Membrane Dystrophy (EBMD), and Anterior Basement Membrane Dystrophy (ABMD).

I hope that you can start the healing process now that you know what it is. I'm so sorry for what you are going through. Please keep this thread (or other threads) updated, and feel free to PM me with questions that you do not feel like posting.

Take care,
Liz

[yeouch]

Thanks very much, you two pretty had it just from the description early on, I'm kind of annoyed at the first opthamologist I saw, who basically kicked me out of the office, after I had described the pain.. and said "its dry eye.. NEXT!" I'm glad I went back.. and saw a different doctor..

I'm quite relieved, and much more calm.. I can take action now! It was really stressful this past week. The doctor didnt quite say, what may be causing these recurrences, other than that it may occur with frequency.. (scary!) That is, if I dont take proper precautions. I have a feeling in both cases, it's somehow allergy induced (since both eyes were initially dry, watering, and itchy, and it was windy outside..) after which pain started coming from the left eye.. the eye that I had originally poked back in March.. it affected my sinuses and giving tingly/burning/pressure sensations and headaches. I guess I was pretty lucky today, my eye exam occurred right as the earthquake struck! How exciting!! The doctor found the abrasion or erosion... thus the diagnoses.

Doctor told me: just really take care of the eye - since it may take several weeks, to months, a year? To heal!? No rubbing or touching the eye, stay hydrated, keep it as moist as possible.. I guess refresh plus isnt adequate, he gave me some refresh "gel" (I used the gel, this stuff feels much more effective than refresh plus) told me to bandage the eye if it gets really intense.. I already have lacrilube, but I found that to be more annoying and uncomfortable.. that's all the information Ive collected.. I'm not absolutely sure what to do in case this does recur, does one usually just deal with it at home or do you go back to see the doctor? He also gave me antibiotic drops.. Yesturday was actually the worst day, today it felt much better, but still I need time for this to heal.. kinda scared to go back outside .. I need to find some type of wraparound glasses..

[liz56]

Yeouch,

I am sorry to sound so negative, but your treatment is inadequate. The first thing that I would do if I were you is to get a referral to a corneal specialist.

Your description of the eye feeling so raw is all too familiar to me. It lasts for a long time after a bout with a series of erosions, so it is going to take time to go away.

Since all you are getting is over the counter (OTC) products and not even Muro 128 5%, which is available at the drugstore, I recommend sending out for a bottle or two of Dwelle eye drops (at Rebecca's Dry Eye Shop). Dwelle is half the price of Muro, and it actually feels better. Muro has saline in it, which burns a lot over time, at least it did for me. Dwelle burns when my corneas are compromised, but it does less as the healing process is underway. Dr. Gary Foulks recommended that I use Dwelle five times each day, so that was every three to four hours, and I used Genteal Gel at night (still do). Then, after the erosions lessen, keep doing it, and after they stop, keep doing it for three months. The erosions will still happen. They kept happening to me for nine months after starting to use osmotic eye drops, but they got "smaller," that is the severity was not as bad, they no longer woke me up at night but happened in the morning, and they did not affect my vision except in a minor way. I stuck with the program, am still on Dwelle at least five times a day and Genteal Gel at night (with Tranquileyes goggles), and I have not had an erosion since March 15.

All of us are different, but I thought I'd pass along Dr. Foulks's advice and my experience, since it seems the doctors are sending you out pretty much on your own. Find a new doctor!

I hope that you can get these under control. You've suffered long enough.

Take care,
Liz

[bassfan]

Yeouch,

I am sorry to sound so negative, but your treatment is inadequate. The first thing that I would do if I were you is to get a referral to a corneal specialist.

Very well written post Liz. I know virtually nothing about RCE but from what you just wrote and my experiences with worthless optha docs, I would also recommend seeing one or two more doctors before you feel settled on a treatment path.

Daren

[Mcgoldilocks]

tips for you

Hi Yeouch, welcome to the hellhole that is recurrent corneal erosion syndrome.

Make sure you go see a good corneal specialist. I also recommend that you get yourself to the hospital and see an ophthamologist when you feel the pain of an erosion so they can look at your eye and see where the damage is, how big it is, what it looks like. Eyes heal so quickly that by the time you feel well enough and can see well enough to get to a doctor, there is nothing left of the erosion to see and you will be sent home with no help.

As difficult as it is, get yourself to a hospital when it's bad and get them to look at your eyes (the benefit is, they will give you anaesthetic drops so they can examine you - HURRAH!!!)

For some day-to-day prevention and management tips, have a look at the blog post where I wrote down all the things I do:

http://www.dryeyezone.com/talk/blog.php?b=71

[yeouch]

yea actually i'd say my happiness was short lived.. I know whats wrong, and reading about this.. it seems likely to recurr... .. especially after this morning, my eye was dry and crusty.. even with all the crap i put in it last night.. the further i read.. oh noo.."may take years to heal"