RCE: Small Victories Deserve Big Celebrations!

You may remember my champagne celebration when I relearned how to walk down stairs using alternating left-right feet after breaking my ankle Memorial Day weekend. That was huge. Oh, the things we take for granted! The things we forget to be thankful for. Recently, I’ve been able to squat down low enough to grab things from the lowest cabinets, although staying down for any length of time – as in cleaning those cabinets – means sitting on the floor.

Recently, I was diagnosed with Recurrent Corneal Erosions (RCE). That’s not nearly as descriptive – nor does it convey the pain half so well – as “firebreathing, eyeball-munching, glass-pooping beetles skating across my eyeball on razor blades.” The thing about this condition is, you never know when it’s going to happen. I can now empathize with poor Prometheus, who so angered Zeus that he was chained to a rock, where an eagle would devour his liver each day – and his innards would grow back each night, so that the torment could begin anew in the morning. In the case of RCE, the epithelial layer (basically the skin cells covering the cornea) get “stuck” to the eyelid, only to be ripped off during REM sleep or upon waking. They heal quickly; the pain can take less than an hour or most of the day to dissipate, but it does get better. Only to start all over again around 3:30 AM.

There’s not much to be done about it, either, apparently – at least not until you’re so desperate that you’re willing to have the entire epithelial layer scraped off the cornea to try growing the whole thing back right. But an ophthalmologist showed me a really cool topo map of my eyeball – which he described as “wrinkled” – and recommended a nighttime ointment called Muro 128, and artificial tears to be used liberally throughout the day. Many people swear by the Muro 128, but it seems to make the problem worse, for me. The key is to somehow try to prevent things getting “stuck,” or to “unstick” them before moving the eyeball (as in REM sleep) or opening the eyelid (as is required when stumbling to the bathroom in the wee hours of the morning). The Muro 128 just seems to make them gunkier, even if it feels fine going in at night. I know that many people are sensitive to or allergic to lanolin or wool, and the Muro 128 contains lanolin. I don’t think that I am allergic to it, but I don’t think it helps.

And I’ve had these erosions every night since before Christmas – since about the time I started using the ointment. When the problem first started, back in August, it didn’t affect my vision much. I knew I needed a new prescription, but it didn’t seem urgent. Then, I started noticing double-vision in my right eye, and halos. The optometrist, the same one who told me that I merely had dry eyes, said that the double-vision and halos were due to a change in my astigmatism – a fairly significant change he seemed at a loss to explain. But he showed me that it could be corrected, and I felt reassured. I bought new glasses.

By the time I picked them up, a week later, it was clear that something wasn’t right. Either they’d screwed up the prescription, or something was horribly wrong with my eyes. They told me to come back in a few days, to give myself a chance to get used to them. I didn’t – and I didn’t get used to them. But neither was I sure that there was something wrong with the prescription. I had a hunch that it was more than that. I wasn’t in pain, so I wondered if it might be a brain tumor. I debated whether to see an ophthalmologist, a neurologist, or both. I started with the ophthalmologist when the pain returned one night. And the explanation, while not encouraging, was reassuring: I had a real problem that wasn’t just “dry eyes,” it could be seen clearly, it wasn’t likely to have any permanent effect on my vision, and I’m about 99.9% sure I don’t have a brain tumor. RCE can cause astigmatism to change significantly and quickly, and that’s probably why I’m a bit dizzy, on and off.  Apparently, these are classic textbook symptoms of RCE – this business of waking in excruciating pain at the same time each morning (during REM sleep) and having sudden changes in astigmatism.

Despite years of wearing contact lenses, I had no idea there were so many incredibly sensitive nerve endings in the cornea. I wish I didn’t know it now! At its worst, in addition to being incredibly painful, looking through my right eye is like looking through a glass smeared with Vaseline. Lights don’t merely have halos around them, they have orb-weaver webs, with seven concentric circles overlaid by seven concentric triangles, slightly off-center. It’s extremely sensitive to bright lights, as well, and a little mentally disorienting. If you’ve ever gotten a new prescription – maybe for trifocals – that was significantly stronger, and had a stronger correction for astigmatism than your last, you know what this is like, visually and mentally. In fact, I wonder if this didn’t happen once when I was about 13 – I remember walking across a parking lot in bright sunlight, and suddenly feeling incredible pain and couldn’t see a thing. Within an hour it was fine, but I needed a new prescription and was told not to cross the street by myself until the new lenses came in.)

It’s bizarre. Fortunately, my left eye is corrected to 20/20 and isn’t experiencing this problem. If I cover my right eye, when it’s at its worst, I get some relief – everything comes into focus and I see just fine.

For three nights, instead of using the Muro 128, I’ve been smearing my eyelid with unrefined virgin coconut oil. It’s been a lovely moisturizer on sensitive skin, so it seemed a logical choice. I Googled, first, to be fairly sure it couldn’t cause more damage to my eye, and found at least one credible study that concluded it was likely a safe and effective “rewetting solution” for dry eyes: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4352907/ I have rubbed it gently onto my eyelid and the corners of my eye before opening it, when I wake up. Sure, it’s hard to see through a film of coconut oil, but it thins out fast enough once I’ve had a cup of coffee and a warm shower. The last three days have been so much better, if not perfect.

But today – today, I had reason to rejoice – I could see. I could read street signs and license plates and – well, really BIG print on my PC using just my right eye! But I could see well enough to know that I wasn’t really losing vision permanently. And I realized that I could do without a lot of things, but vision isn’t one of them. Nearsighted as I have been most of my life, I used to think that it was – that I could adequately compensate for vision loss, if I had to. But having had the terrifying sensation of seemingly uncorrectable 20/800 or something vision for several weeks – in just ONE eye – I realize it would be so much harder than I once imagined. “Please, please let me keep it,” I whispered of my newly restored sight. I don’t ask for much, when I pray, but this… well, please let me keep it.

I realize that tonight, or next week, or six months from now, I may wake up and pop open my eyelids without thinking – and start the whole miserable routine over again. But I it might be bearable, if I can just keep my sight.

Update: 7/6/2016

Not long after I wrote this, I started having corneal erosions twice a night, just about every night. I had to yell “Uncle!” and go see the ophthalmologist again – he was a bit shocked at how bad things got, very quickly. I now sleep with a “bandage contact lens” (nothing more than a Night and Day Air Optix 30-day disposable lens), and everything seems to have healed up nicely. I’m afraid not to use the lens – and can use one in the other eye if needed, since it seems to be trying to get in on the act. I have a new glasses prescription (the old one was never correct – it wasn’t just my eyes!), so never fear, if we’re on the road together, my vision’s 20/20. I’ve also gone from about 3 hours’ sleep a night to 6.5 hours sleep a night, on average, so I’m not just well-rested, I’m wired.

If your ophthalmologist suggests a bandage lens, make sure they show you how to properly remove and insert it yourself. I’d heard horror stories of people with RCE and a bandage lens rushing off to the ER in excruciating pain, and my doctor said, “None of mine have!” It occurred to me that maybe the ones who had had never worn a contact lens at all. Having worn contact lenses since I was 12, this was no big deal for me, but for someone who has never worn them, it can be terrifying if the damned thing folds up and hides under an eyelid. Doesn’t happen often, but feels…just like having an erosion. I use a an eye wash with a cup to sort of rewet it and float it out – the key is not to panic and make it worse. 🙂 It can’t get lost behind your eyeball, but it can be hard to see and you don’t need to be digging around with your fingers, looking for it. There are also plenty of videos on YouTube that demonstrate general insertion, removal, and cleaning. It’s okay to remove it during the day unless your ophthalmologist says it’s not.

 

 


DISCLAIMER: This is my personal experience and not a testimonial for or against any treatment recommended by your doctor. I am not a doctor, this is not medical advice, and I strongly suggest you consult a real doctor for real medical advice if you landed here looking for a “cure” or “treatment” for dry eyes or recurrent corneal erosion (RCE). This is not meant to be an endorsement of coconut oil as a panacea or a criticism of Muro 128 (which many sufferers absolutely swear is the key to feeling better, and may well be!) It’s just what seems to be working for me. At least…this week. 🙂 Here’s hoping that lasts, and isn’t just superstitious wishful thinking!

 

HollyJahangiri

Holly Jahangiri is the author of Trockle; A Puppy, Not a Guppy; Innocents & Demons; and A New Leaf for Lyle. You can find her books on Amazon at http://amazon.com/author/hollyjahangiri. For more information on her children's books, please visit http://jahangiri.us/books.
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29 thoughts on “RCE: Small Victories Deserve Big Celebrations!”

  1. WOW! Coconut oil seems to be nature’s remedy to everything. My girlfriend uses it as a teeth whitener. I got to explore this further. Wishing you good health for the year of 2016!

    1. Yeah, it’s almost embarrassing to write a post suggesting it as a remedy for anything – it’s that much of a cliche. I found it highly annoying, while undergoing cancer treatment years ago, to get IMs from well-meaning people suggesting that I do weird things like eat nothing but grapefruit or rub tea tree oil on my breast or whatever. But as I said on Facebook, when it comes to this RCE, if someone said I could cure it – or even just lessen the pain – by sacrificing a chicken and burying it in my back yard, I’d be almost willing to try it. I figured the coconut oil couldn’t HURT, anyway, so why not? And so far, so good.
      HollyJahangiri recently posted…RCE: Small Victories Deserve Big Celebrations!My Profile

  2. Congratulations! So glad it is working, even if temporarily. Praying it stays that way! Thanks for sharing, and yes, Coconut Oil is great for so many things!!! Thanks for sharing.

  3. Well, Congrats! I am glad things are improving!
    I say that as both a greedy reader… And a friend.
    You must tell the Good Pastrix to say a prayer for you.
    While I do not believe, I know that those who do, seem to benefit from same. Panacea? Why I do not know. But to me, only the ends matter, not the means….

    1. I had a faith healing once. I cannot claim to have had any faith in it at all, but I did pray throughout to God to keep me from laughing at my grandfather, who was laying his hands on my head and praying for me to be healed from poison ivy (the kind that requires prescription steroids, painkillers, and packing your body in ice). I hurt so bad I’d have tried voodoo spells, but the urge to laugh was nearly overwhelming.

      The next morning, I woke up and the blisters were mostly gone. The itching and pain? Gone. The man had enough faith for the both of us, or God rewarded me for being a loving and respectful granddaughter. Maybe all of the above. I don’t know – but I do know the normal course of poison ivy, and that was NOT it. I will take my miracles and be grateful, without question.

      Unfortunately, the clear vision of yesterday is not with me today. But neither is there excruciating pain, so I’m not complaining.

      1. Well, good luck. Now, I hate to throw a crowbar in the wheels…. (But I am SO darned good at it!) Have you consulted with another doctor to get a 2nd opinion? And how are the artificial tears coming along?

      2. I kind of consider the ophthalmologist’s a “second opinion.” I’ve had three eye exams, now. Mostly, the same kinds of tests, but the ophthalmologist ran different ones – and the topo map – for corneal problems. He’s also very experienced and comes highly recommended. And he’s conservative (usually not a bad thing, with doctors) – I liked that he was thorough, explained things matter of factly, and even that he did not put down the work of the optometrist I’d seen before, who would not have had the equipment the ophthalmologist used to confirm “corneal erosion” as opposed to dry eyes. The only thing I’d criticize the optometrist for is not sending me to an ophthalmologist when I described CLASSIC symptoms – waking in pain at the same time each morning (3:30 AM), feeling like there was glass in my eye, feeling better within hours… this is not mere “dry eye” symptoms, but it’s TEXTBOOK for RCE (and I even asked if that might be it). But I don’t think he was dismissive or not as thorough as he could have been. I think he truly believed that was all there was to it. And I didn’t have another erosion for about two months. I just had the weirdness with the glasses prescription. I didn’t even connect the dots for weeks – not until I could barely see, AND the pain came back. Some people have this frequently; for others, it’s just a few times a year. And apparently, the epithelial layer can heal in a matter of hours, so if there’s not a fresh erosion to see, it may be hard to diagnose without very specialized equipment. I don’t know. I just know it’s annoying as hell and not likely to cause blindness. (Bad news/good news. It’s always something, eh?)

  4. One GOOD thing: No blindness!
    One bad thing: Pain.
    Now here is a crazy idea…. (Most of mine are!)
    But if you always wake up at 3 AM with the problem, why not beat mother nature to the punch, and set your clock to wake you at 2:30 AM? Then you take a pain pill, open your eyes, take an eye bath to moisten things, grab 2 melatonin, and crash back to sleep?
    If you are going to wake up at 3 anyway…..
    (Try not to be offended, in my own prissy little crazy way, I am trying to help. It is my greatest fault.)

    1. There are people who’ve described setting an alarm clock every HOUR, for two YEARS, to beat mother nature to the punch. I don’t think it works, and the lack of sleep can leave you crazy. Not offended at all, mind you – but of course if I took a pain pill at 2:30 am, I probably wouldn’t be worth spit at work in the morning. 🙂 Eyewash is definitely something to consider; the pharmacy was out last time I looked, so I’ve just been using the overpriced artificial tears. (It’s like $23 for 30 little vials, but whatever – if it works, it’s worth it.)
      HollyJahangiri recently posted…RCE: Small Victories Deserve Big Celebrations!My Profile

      1. UGH! Every hour! 2 years! Brutal! I have sympathy, pity, and empathy, there!
        Well, it all depends on the kind of, and dose of, pain pill.
        Go with the eye wash!
        Confucius say: “Holly not worth spit, beats many others who can only spit!” (Sorry, All I could come up with. But there may be a story there….)

    1. Yes, I don’t think coconut oil could possibly be the Holy Grail. But it’s very good for some things. Moisturizer – definitely. Eyes? So far, yes. (Still having problems, so it’s not a cure-all, for sure, yet.) Tastes okay. Beyond that? Who knows for sure. Apparently it does have some anti-microbial and anti-inflammatory properties, and that can’t hurt right now in my eyes, either.

  5. Ugh. This was a little hard to read cuz I’m squeemish that way. So glad you found some relief. And yes, small victories are sometimes BIG victories so celebrate!!!

  6. Goodness woman! You sure it’s not related to your eating bugs this past summer? lol I didn’t know about the pain part of your eyes… at least I didn’t remember that part. I’m glad it’s easing and I’m glad you’re seeing better. My vision is the reason I wanted to get my glucose under control because my eyes were the area of my body that was affected the most, so I know what you mean about wanting to make sure you could see okay.

    Good luck with the rest of it; I hope you’re back to perfect in no time.
    Mitch Mitchell recently posted…The Last Post Of 2015; I’m Tired!My Profile

    1. Thanks, Mitch! I’m pretty sure it’s not “Revenge of the Bugs,” although I’ll bet I could write a creepy story along those lines that’d have you and Pete commiserating over “What to do about Holly.” I worried about diabetes, too. About as long as I worried about a brain tumor. But you know – it could happen. It’s not outside the realm of possibility. And yes, either of those would be scarier, I think. This is disturbing enough. How is your glucose control, these days, Mitch?

      1. It’s actually pretty good… when I remember to take my medication. I’ve set a goal this year to walk upwards of 20K steps a day because I have a weight goal. I’ve also set some alarms to help make sure I take my meds… although I just realized that one isn’t working because it should have gone off 30 minutes ago… ugh! lol
        Mitch Mitchell recently posted…This Year’s Magic Word… FocusMy Profile

  7. I am stunned at the background to the story but not at all surprised at the fairly tale ending. Congratulations. coconut oil is the first answer to many problems in India, particularly for people from the South and West Coast.
    Rummuser recently posted…Clock Watching.My Profile

    1. Well, I’m not sure there’s a “fairy tale ending” just yet, though I’m hopeful to have found a workable truce with this disorder. Still good. Yesterday, the vision was bad again. Today, it’s better again. So I do think the coconut oil is still helping (and certainly not hurting); I also think that the Refresh Optive Advanced drops are doing their job admirably, and proving to be worth the price of a coffee each day. (They’ve certainly put the price of organic, expeller pressed, fair trade, unrefined coconut oil into perspective – it now seems quite the bargain! LOL) I think you Indians are onto something there, with the coconut oil. 🙂 While I still don’t think it has magical properties, it’s certainly good and versatile stuff!

    1. Well, like I said to Pete, yesterday, the opinion I got make sense, perfectly fits the symptoms (and pretty much everything everyone’s written about them), and I may not be desperate enough, yet, to get my corneas scraped. At its worst, it’s enough to make me consider it. But I’d also want to find a surgeon who had done it with a 90%+ success rate numerous times, because the idea of a “diamond burr” that close to the Bowman’s layer does kind of creep me out, even if it’s practically an office procedure. And I’m pretty sure it hurts like hell for a while. (So did having my tonsils out, but that beat having tonsillitis all the time.)

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