Hi from Boston MA - Severe Dry Eye / RCE sufferer 3 years

[cgiordani]

Hi all, I have been dealing with severe dry eye / corneal erosions for 3 plus years. I have had periods of "calmness" along side periods of severe flareups. I am in the flare up stage right now...and it hurts so very bad. What I have done:

Restasis, Lotemax, "tears" ointment, gels, homemade goggles to create humid environment, anterior stromal puncture therapy (dr. stuck my bad left eye with a needle to produce healing mechanisms), bandage lens, omegas, luiten, humidifier

Right now I use drops throughout the day (like systane, genteal drops etc etc). I also use Restasis as well. I use genteal ointment at night. I take omegas and luiten in the morning. I KEEP WAKING UP EVERY 2-3 hours and I physically CANNOT open my eyes. It's like the ointment is not there anymore providing the lubrication. It's like 2 pieces of sandpaper rubbing next to each other. I will slowly pull the lower lids down, and start putting drops in there to strat the lubricating process. This takes a good 2 minutes...finally starts to work. I START to open my eyes, and then in my left eye (sometimes in my right) in the very same spot, it "rips". This hurts so very bad. I keep putting drops in it to calm it down. I also get up again, to put the ointment in there, and imagine this entire routine happening 3 - 4 times a night. WHAT CAN I DO??!!!!!

I would give my left hand for this to go away. I am not sleeping. I work...I have to work...so I can't just rest my eyes whenever I want. I am middle school math teacher...

I need some advice please. I have seen the corneal specialist of MAss Eye and Ear. He did about 20 blood tests to test for autoimmune diseases. They have come back fine. I also go to a corneal specialist (who is my local go to) and the big wig specialist has confirmed her treatment thus far.

HELPPPPPPP!!!!!

[Rebecca Petris]

I am so sorry. That's such a bad place to be.

I'm really glad you're here on DEZ. We've had a lot of people here successfully get their RCE under control and I hope you can glean some things from their stories that will help. Check out liz56's blog. Also look for Cindy's posts (you can find them in the Member List, above).

I really think Dwelle can be the most help in situations like this. Takes patience but it does the job. For some people Tranquileyes is a really helpful took (in conjunction with the right lubricant) to help hold those lids still

What about taping at night?

Do goggles help with the dryness during the day at all?

[cgiordani]

Hi there...thank you for the reply and some strategies to check out. What do you mean taping? I am going to check out Dwelle and those members you mentioned.

[nycdryeyegirl]

Hi!

There's is a eye doctor named Dr. Stephen Foster whom you might wish to consult with. He directs the Massachusetts Eye Research and Surgery Institution at Cambridge, Mass. and if you wish to make an appointment with him call 617-621-6377.

I had "several consultations" before I found an eye doctor who really understood my eye condition and was able to treat it.

Pam

[Rebecca Petris]

What do you mean taping?

Sometimes when moisture goggles or other strategies don't seem to do enough people use medical tape to hold their lids down at night. Not the pleasantest thing in the world but it's pretty effective. Most tapes have adhesives that can be pretty hard on the skin. Personally I like Micropore paper tape - doesn't seem to be as tough or leave as much residue as other types for me. There are various ways to tape. It's been a long time since I've done that but if I remember right what I used to do was use two pieces per eye and make a sort of X over them, then peel it off in the morning top to bottom.

[cebeth]

Rce

Hello cgiordani,

I also have RCE and dry eye. I have used all kinds of drops and ointments. I have also had 3 unsuccessful surgeries to try to correct the erosions. So far the thing that has helped me the most is using bandage contact lens 24/7 and Dwelle. I bought Dwelle from a store on this site. Check it out. Also read some of Dr. Holly's posts as he created Dwelle. It will give you some background on why it works.

Beth

[liz56]

Hi, Cgiordani.

I'm so very sorry to hear your story. I suffered from RCEs for almost a year, and I know how alienating and debilitating it is.

All of the advice you are getting here is really good. One thing that I learned when I was going through it was that it takes a much longer time to heal than even doctors can sometimes detect, because the surface heals quickly but the deeper healing in the basement membrane really takes 6-12 weeks. Using goggles at night is something that really helped me, btw.

I have some selfish questions. When you say that your experience goes in cycles, can you talk more about that? I'm a ways out from my last erosion, but I know that my corneal dystrophy is known to cycle. I also know that sometimes I feel like I am really keeping things at bay and other times it feels easier. Do you get years or months or weeks without the erosions?

If you are not feeling like answering the above questions, not to worry. I understand that you need to concentrate on healing yourself and that is why you are here.

You had mentioned that you use Genteal ointment, but have you ever tried Muro 128 5%? That ointment did not work for me, so I use Dwelle, which does something similar but without the ointment. Another thing may be to try the Muro 128 5% drops rather than the ointment every four hours. I know that when I was in the worst of my erosions, I felt a difference from that treatment (prescribed by my first corneal specialist) in the first two hours after using the drops. (Just for clarity Muro 128 5% comes both in ointment form for nighttime use and drops for daytime use-- available at most pharmacies and grocery stores.)

Keep us posted. You have lots of support here!

Best wishes to you,
Liz

[Laura]

sorry u have to deal with this misery .I think you should read up on the forum for scleral lenses

[tina671]

Hygrometer in your classroom?

Hi, sorry you're having such a terrible time. I'm also a teacher, in HS, and work in a building with a terrible HVAC system...my classroom is routinely 80 degrees (yes, even now, in February) with zero percent humidity.

Despite lots of complaints (not just from me, other teachers and students suffer, too) and a letter from my doctor, nothing has changed.

Check the humidity in your classroom, it's probably contributing a lot to your problem. Old school buildings are waaaay out of code, generally.

[Sniffles]

Yes, usually old school buildings have horrible systems! You could always try petitions and have the doctors call the school building administration to get them to upgrade all of their hvac parts in order to bring them up to code. Not only is it energy efficient for them and illegal to be under code, but it would also help most of the people in the building feel better!

[canndym]

Hi, I am sorry to hear you have been suffering for so long. I have had RCE for 10 mths now. I too find mine cycles it happened twice in Dec, then February, June, July and now in September. I find these do not happen in the morning when I wake up they usually happen in the afternoon at work (with the exception of December when it first started). They usually take about 2-3 wks to heal. I also get smaller erosions if I open my eyes too quickly without getting drops in but these seem to heal in less then a week. When my RCE is flared up my whole body feels sick I get numerous mouth ulcers and sometimes the lining of my mouth will peal off, my raynauds get realy bad to the point I can't always move my hands and I feel like a bus has hit me and need to sleep alot. When I open my eyes too quickly and they rip I do not get any other symptoms.
Does anyone else ever get other symptoms when their RCE flares up?
I wish I had advice for you.. but obviously I still need to figure out hep can help too. I am going to try the trainquileyes I will let you know how they work for me after I get them. My Dermatologist also put me on Colchine as an antinflamatory to help get my mouth ulcers under control it works great! He thinks it may help my eyes heal faster too so far I have not found that but I will keep trying and let you know.