My Life Has Changed Overnight

[morgaine101]

Hi everyone. My name is Morgan, and I've been diagnosed with Map Dot Fingerprint Dystrophy. One day I was fine, the next day my eyelid was tearing my cornea off of my eyeball.

I'm trying to find solutions to a very serious problem: I cannot sleep for more than 15 minutes without tearing my cornea off either due to REM sleep or opening my eyes. I awaken to the feeling of being poked in the eye with a sharp stick. This has been going on for about a week and a half, give or take. I have slept approx. 6 hours in the last 6 days.

I am mentally ill (medicated) and sleep deprivation is affecting my mental illness in a very negative way. I do not have health insurance, but the Ophthalmologist I've been seeing is taking payments (thank Goodness!). He is working with me trying to stop the RCEs, but so far nothing we've tried has worked.

Initially he put a lens in to 'bandage' the cornea so it could heal. It was great during the day, and I slept a full six hours uninterrupted that night. As I slept, however, my eyelid adhered to the lens, and the lens adhered to my eye. Back to the drawing board.

Prior to seeing eye doc, I ordered Dwelle drops and Tranquileyes (when the problem first started). The items arrived on the day of my 2nd appt., after the lens failed to solve the problem. I showed the doc what I had purchased, and he said I should try the Dwelle with the goggles, and gave me a scrip for hypertonic eyedrops should the Dwelle and Tranquileyes not work. I tried Dwelle and the goggles that night; within 15 minutes REM sleep had begun shearing my cornea off again.

Today I started Muro 128 (drops, not ointment). If that does not work, he will utilize puncture therapy. In the meantime, how do I function when I cannot sleep? I must work; my employer threatened me for the emergency appt. I had with the eye dr. I work from home on a computer...thank Goodness this is only affecting one eye (left).

How soon should I begin seeing results from the Muro 128? Will I ever sleep through the night again? Will I ever again sleep more than 15-20 minutes without shearing off my cornea??

It seems that people on this site have found hope, and some have even found solutions. Please God, let me be one of them...

Morgan

[Rebecca Petris]

Morgan,

I'm really sorry for what you're going through.

Something really important to understand (though frustrating too...) about getting this under control when erosions are out of control is that any single step you take is going to require significant time to show improvement. That's very hard to deal with when you're already sleep deprived, but it's really vital that with a new treatment esp. lubricant or drug you give it time to work.

Personally what I think I would be trying if I were in your shoes is to max out and give myself a chance of sleep - which it sounds like has to be at least as high a priority for you right now as your eyeballs:

1) Warm compress before bed (unless you have other issues with major eyelid inflammation etc)
2) Put in Dwelle
3) Tape eyelids shut (personally I like Micropore paper tape - in most drugstores - doesn't stick too badly to my skin)
4) Put Tranquileyes on on top of that and get that moisture pad nice & moist.
5) Sleep med if possible! (mind I'm not a fan of this or frankly any medication but when necessity calls ya gotta do something about the sleep thing)
6) When waking, after taking off the goggle but before removing tape or opening your eyes put a damp cloth over your eyes or even just squirt some unpreserved saline or artificial tears over the lids to soften things up.

We have a lot of RCE sufferers here and I am sure they will offer many great suggestions too. By the way I would be using Dwelle 3-4 times a day, not just at night, to maximize healing effect.

Hang in there, you will get your sleep back!

[Tempestuous]

Hi,
I've unfortunately been exactly where you are - 15 minute sleep/rip, contact lens bandage ripping off a chunk of the eye. Turns out people with microcysts will have that happen.

Go to the rxlist website and out in your medication. check to see if any of the listed side effects are dry eye/mouth.
If so go straight to your doc to see about coming off them or being changed to something else. Remember, some meds need to be tapered off. Its a balancing act between what will kill you first. Theres no easy solution. Just work with your doctor.

Work with your doctor for pain management.

After a few months of 15 minutes sleep followed by rips to both eyes, I'd taken a sterilised knife to my eyes a few times. Its just a state of delirium where you dont know whats real any more apart from the pain.

The best solution I found to this was to just accept the fact that my eyes would rip. Once I accepted it I took steps to prepare for and deal with it.

Realise that your body only heals itself through sleep so long term sleep deprivation worsens your eyes.

So when my eyes were in that state, before I'd go to sleep, I'd take
- Diazepam/ valium - to take the edge off the fear of sleeping
- Temazepam - sleeping pills
- Co-dydramol 2x30/500 - painkillers
- Diclofenac - painkillers

This way I could manage the rips best during the 15 minute sleep/rip phase - although I've since found better pain relief with Tramadol.

Once you wake, lubricate through your closed eye and let it seep through. If you try opening it, you risk ripping anything further.

Once you get past the 15 minute rip phase you stop the preparation medication and set your alarm hourly for re-lubricating your eye. It is imperative to learn to overcome your fear and not open your eyes forcefully, and instead insert lubricants through closed lids over 10 minutes or however long it takes to unstick them.

A few other tips...
if you have central heating or air con - turn it off. (Central heating is the single most significant factor to my eyes - after stopping the drying medication.)
Buy a humidifier.

Read my thread here for some of the things I've tried.
http://www.dryeyezone.com/talk/showthread.php?t=9813&

Good luck

[morgaine101]

Temp & Rebecca, thank you so much for your replies. I'm something of a research junkie, so I knew something about what was happening to me before the trip to the ER got me a referral to the eye doc. After I wrote my post (a day? two?), desperation had me seeing if maybe I missed something that could be helpful. It was then that I discovered the part about the saran wrap. I tried it that night. Blessed relief! I slept about 3 hours. I was literally psychotic from lack of sleep: hearing and seeing things, flash rage eruptions. I was so grateful, I cried. Darn! Wrong thing to do! lol

2010.05.16.1:26am
Seriously, I do feel loads better. I'm coming to terms with my life has changed; I can never go back to pre-MDFD, but I can learn to live with it and have an enriching life, nonetheless.

I definitely considered pain meds, if for nothing else, then simply for the fact that they would knock me out and maybe I'd sleep through the erosions. However, I am a Recovering drug addict, and unleashing that demon into my life again is appealing not at all. I decided against it.

I use a warm wet washcloth at night to moisten my eyes and encourage my own natural tears. I use Muro 128, 3x, 5 mins. apart every morning, then every four hours after that. I use Tobramycin 4x/day to prevent infection of my compromised cornea. My doc tells me it's the only ophthalmic antibiotic that is not toxic to the cornea. I use Dwelle every 4 hours, and keep it on the nightstand next to my bed. (Sidenote: Doc says his dad participated in an eye drop study in which the main active ingredient in Dwelle, polyvinyl alcohol, was used as the control. The test subjects on the medication and the control subjects all improved at the same rate.) I put saran wrap on my eyes and put my Tranquileyes mask on over that. I change the saran wrap every day and am careful not to contaminate it, so as to reduce risk of infection. I've found that if I keep the mask reasonably tight, my eyes won't move much during REM, so if there is an adhesion, it won't cause an erosion. I've utilized the accessibility options on my computer and set it up for someone who is visually impaired, which I have found helps tremendously when my eyes are most sensitive to the light.

When I awaken in the night, for any reason, I redose w/Dwelle. I dose prior to opening my eyes, so as to not tear any adhesions. I wear Solar Shield Square Lights, smoke in the sun, clear when I'm working at the computer. I use WorkRave to remind me to stop and take breaks, dose my eyes, etc. I wear a baseball cap, even indoors, cuz the brim helps to reduce the light in my eyes blinding me. Most importantly, I think, I pray, which gives me courage and strength, and acceptance.

Had I not found your site, I just don't know what I would have done. Without the products from the Store, helping me so much, I shudder to think how bad it would be. Thank you so much for being here :~)
Morgan

[liz56]

Hi, again, Morgan.

My RCEs are also from M-D-FD / EBMD. I have them under control, but, like you, I was sleep deprived and in a terrible state for almost a year. I hope that some of the things you are trying are helping. Rebecca's wonderful, and her community here got me through the worst of it.

I kept a blog that retraced my year with RCEs, using a log I kept of when they happened and the changes I made to try and stop them. It's posted on that blog as well.

I don't know if you will find it to be of use, but I thought I'd mention it, just in case. I know that I was very hungry for details and information when I was going through it, and I would read and re-read whatever I could find about EBMD and resultant RCEs.

I wish you well in your recovery process!

--Liz

[ringo]

Hi
I had severe corneal erosions too and was basically living with my eyes patched.What put an end to it was a month of Tobradex ointment plus Fml drops 4 times a day (tapered gradually) and doxycycline by mouth.i was screaming with pain and the defects would appear any time day or night.I also used lubricant gel with vitamin A and Panthotenol in it.I was told to stop any sleep or antipsychotic/depression drugs or any narcotic painkillers during this month of treatment,as they dry the eyes (at least for the duration of treatment).
I was also given pilocarpine tablets for making tears,cyclosporine to target inflammation in the long term and antioxidant NAC for the eyes (by the way it is prescribed for alcohol/drug addiction and certain mental and inflammatory illnesses- check it on Wikipedia).
Thank God this regimen put an end to the severe erosions in one month time,I was maintained on low doses of a few meds from then onwards.never used tobradex ointment again.
And yes central heating is horrible indeed,try to have ur face next to a humidifier when working on a computer.
Oh forgot to mention,I was off work for this
month and 2 days in hospital.Subsequently,resigned from work altogether.
Had to save my eyes.Do not hesitate to go off work if you are that bad!doctor should be able to justify your absence.Pamper and rest your eyes.
Also,be sure to try every conservative option available and be very cautious when offered debride
ment,cornea punctures,etc.Recurrence is documented after these invasive procedures and they require aggressive steroid treatment in the recovery phase.

[morgaine101]

Thank you to everyone who has been so wonderful with your tips, experiences, and ideas. As I work my way through this, I find my moods swing horribly. Some moments I'm hopeful, others I'm despondent. As a member of a 12-Step Program, I have support from people who care about me; yet, I can still feel completely isolated.

I had so not wanted to go the route of pain meds, but it eventually became clear even to me that they were necessary. I awakened my Sponsor at 7:30 on Sunday morning, crying from the pain. The pharmacy did not open for another five hours. I knew my Sponsor couldn't do anything to 'make it better'; I just did not want to be alone. She stayed on the phone with me for an hour and a half, just talking with me, until I began to feel better.

A friend of a friend works at an eye clinic and I will be going to see a dr. there. I like my dr. here, but I'm very nervous about having the stroma puncture therapy (is that what it's called?). I want to completely exhaust every single possible option before going the route of surgery. Thank Goodness I never had the money to get that Lasik surgery I had always wanted!!

I'm still not sleeping the way I'd like to be, but feel less hopeless tonight than I did even last night. I use Muro 128 3x, 5 mins. apart every morning, then every four hours after that. I use a topical antibiotic 4x/day to prevent any further disease to my exposed cornea layers.

I've run out of Dwelle, and need to wait until I am paid again to order more. I use plastic film with my goggles to try to keep moisture in my eyes from evaporating. I soak my eyes under a warm, wet compress for 10-15 mins. every night before bed. I pour GenTeal Gel for severe dry eye into my eye before covering it with plastic film and goggles. Still, I have to set my alarm for every 15 mins. to add more drops. I did sleep early this AM for a couple of hours, but then awakened to a minor erosion.

I use GenTeal Gel Drops for moderate to severe dry eye during the day, as needed. When I am paid again, I will reup on the Dwelle, purchase better moisture chamber goggles, begin using hypertonic ointment at night, begin dietary supplements (omega3, etc.), and begin eyelid cleansing. I'm drinking more water.

Can't stay on the computer very long, and I work on it during the day, so I'm off to listen to a book now. Thanks again for all the support :~)
M

[morgaine101]

BTW, thanks Liz, for the blog. I've only read your first entry thus far, but I look forward to reading more about your journey :~)

Hi, again, Morgan.

My RCEs are also from M-D-FD / EBMD. I have them under control, but, like you, I was sleep deprived and in a terrible state for almost a year. I hope that some of the things you are trying are helping. Rebecca's wonderful, and her community here got me through the worst of it.

I kept a blog that retraced my year with RCEs, using a log I kept of when they happened and the changes I made to try and stop them. It's posted on that blog as well.

I don't know if you will find it to be of use, but I thought I'd mention it, just in case. I know that I was very hungry for details and information when I was going through it, and I would read and re-read whatever I could find about EBMD and resultant RCEs.

I wish you well in your recovery process!

--Liz