New EBMD w/RCE's

[Poldara]

To make it short, sort of:

I was diagnosed last August and have had 3 episodes so far, the latest lasting 7 days. I have also learned I have a high pain tolerance, so I have to make it clear that I am not simply uncomfortable but in pain. Apparently the last erosion was so big I should have been on my knees in pain.

I am now using GenTeal (LOVE this stuff), the night time lubricant stung to much and I stopped using it and not knowing what it was doing for me never told the doctor. The on call doctor that I saw also suggested Tranquieyes if I could condition my self to sleeping in them and gave me a 3 page handout of behavior modifications, which is more than my regular doctor ever gave me; in fact, it took 2 visits and 2 erosions for him to adequately explain this condition to me and I'm in the healthcare field! So now I'm using Systane Ultra as needed and GenTeal gel at night, although I use the gel at work when needed as my eye further heals - I work in a lab, which are notoriously dry spaces and my boss is looking into what it would take for me to have a small humidifier in my work area, especially when I am on the microscope.

Here;s the strange thing. The map or as I call it, the continent, in my left eye crosses across my field of vision so I have hazy vision, see double, and the acuity is just icky. When I had the contact bandage in, this all went away and I figured the map must have eroded. When I removed the bandage it all came back Something to bring up with the doctor at my next visit. I am also going to ask about scleral lenses and since I hope to be moving back home to Massachsetts this summer I'll be in the perfect place .

The story is much longer, as I'm sure they all are, but I'm just grateful there is a place where I can vent and know that I am not alone.

[liz56]

Hi, Poldara.

I'm really sorry to hear that you are having erosions. I'm glad that the bandage contact lens (bcl) worked for you. I've never tried it, myself, but I hear it works wonders for a lot of people.

One thing that might help you at work could be moisture-chamber glasses / goggles. They are glasses or goggles with foam, and they keep air out. That's just one thought.

It sounds like you have found some other things that work for you, and that's great. I'm impressed that your healthcare professional gave you so much information. I accumulated information from seven different doctors, who had varied levels of understanding what was wrong. So, it's great that you found a good one!

--Liz

[abbygirl]

Hi Poldara,
When you talk about a bandage contact lens do you mean a regular contact lens?? I can no longer wear contacts (even the new moisture ones) but a dry eye specialist talked me into trying a lens in one of my eyes (because I was so scared to put one in both) and told me to wear it all day and night for 3 days!!! It was an Accuvue lens and I could only stand it for 3 hours!! After I took the lens out my eye was beet red and it took days of drops etc. to get it back to "normal." Am I missing something??? I don't want to go back to that doctor now!!

[Poldara]

Hi Abbey.

The bandage lens she used was an extra large silicon lens. The first day wasn't that great, although it enabled me to blink, but the irritation/pain was still there, but each successive day (as the eye healed) got better. I don't think I will ever go back to normal contacts, the last time I wore them, about 2 years ago, my eyes were just gritty and achy (now I know why). Although I have been doing a little research on the scleral lenses, so we'll see.

As for the missing something, no I don't think you are. Way back when (when I took my eyes for granted) I treated my contacts like dirt, rarely enzymed them, wore them for days on end and then I was told my eyes were starving for oxygen and I was prohibited from wearing them for 3 months (I went a year to be safe LOL). I honestly don't believe contacts should be worn for extended periods of time and I don't believe in extended wear contacts, except for those silicon, hydrophillic bandage ones

[Poldara]

Hi Liz -

I ordered the tranquileyes from this site and started using them last night, my eyes felt wetter this morning if that makes sense. I know the goggles you are talking about and am already considering them, I don't really care if I look like a dork at work they just need to fit over my glasses.

This site was invaluable to me over the past week, as was that handout the doctor gave me. Unfortunately, my new eye doc here in Carolina wasn't very informative but the doc I had to call in on a holiday weekend was great, too bad she's the pediatric doc or I'd switch And thanks to her handout and this site, I can go to my next appointment better prepared and ready to ask questions.