Another Newbie

[MauravdL]

I've been diagnosed with ABMD and wear a cpap at night which leads me to eyes that are okay during the day but dry out at night and glue themselves together. Nothing quite wakes you up as thoroughly as screaming pain from wrenching your eyelids open.

I'm on Muro 128 gel at bedtime and Systane drops as needed but it's not really fixed my problem. I'm okay for a few hours but will wake in the middle of the night to scraping on my eyeballs. I'm also on fishoil capsules and warm compresses.

Now I'm in the process of trying out TranquilEyes and Onyx at night to see if I can get some relief. I really wish there was an in-between item - I can sorta wedge the TranquilEyes under my CPAP mask (a Mirage Quattro) but it doesn't seal fully - yet it keeps my eyelids shut which I think really helps, and keeps direct airflow off my eyes. The Onyx fits well under the cpap mask but allows my eyes to open which seems to be an issue. So I'm still experimenting.

I also have rosacea, so skin irritation can be an issue and makes any adhesive-based solution problematic.

So...long and rambling... but here I am.

[Pinklady]

Hello,

Welcome! This website has been so useful to me in understanding more about this condition and different ways to manage it. My daughter also suffers from EBMD and we have tried a variety of treatments over the last 2 years. She gets the dreadful corneal erosions that you describe and was getting them every month.

We have tried most lubricants available day and night, even getting up in the night to put more lubricants in but nothing seemed to prevent the erosions. My daughter then had Alcohol Delamination on both eyes which seemed to help her left eye.

Currently she is wearing Bandage Contact Lens night and day. As she is only 3yrs old, it is impossible for us to change the lens daily so these stay in for a month at a time. She also still has hourly eye drops (hylo-forte). So far this combination seems to be working for us though I know this isn't a long term solution.

Best of luck in finding some useful information!
Claire