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.
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!
Latest posts by HollyJahangiri (see all)
- A Brand New Blog with a Fresh Perspective! - September 15, 2017
- If We Were Having Coffee, I’d Tell You to #WriteBravely… - August 12, 2017
- A Taste of Home for the Next Generation (Interview with Sapna Anu George) - August 9, 2017