Light sensitivity causing Corneal Erosions - help?

[Tempestuous]

Hi,

My own searches have turned up little and my corneal specialist (and dozens of other so-called specialists I've seen) have been unable to offer any help, so I was hoping someone here could perhaps offer some assistance.

What I'm trying to find out about is why I have become so sensitive to light that I experience corneal erosions after a few hours exposure to daylight, or even regular levels of indoor lighting, all whilst wearing sunglasses and a cap.
Is this a known phenomenon - so that I can show my specialist some literature to prove my symptoms?
Is there any research into this?
Is there any form of treatment - preferably other than to stay in a darkened house for the rest of my life?

The pattern is always the same.
After a few hours exposure I get stabbing and throbbing pains followed by a dry grittiness, that no lubrication can mollify, resulting in thoroughly bloodshot eyes.
The severity of the subsequent erosions in each eye is directly related to the length of exposure to light after the throbbing starts.
Blindfolding both eyes immediately upon onset of the throbbing pain will prevent erosions altogether, and retaining the blindfold for the majority of the next 3-5 days helps the eyes heal. The throbbing pain itself, throughout this period, is relatively minor - 60mg dihydrocodeine will suffice.

Until a few days ago I had been rip free for about 3 months and my specialist said that my corneas had healed and looked healthy - other than a cluster of micro-cysts. Despite my elation at this news, the exposure to daylight from going to that appointment kick started the cycle once more.

I would greatly appreciate any help as I refuse to waste any more of my life hiding in a darkened hole.

Thanks

[liz56]

Tempestuous,

That sounds terrible. I'm sorry that you are suffering so.

My situation was exactly the reverse. Once my erosions, caused by a corneal dystrophy, became really bad, then, did I become photosensitive. Once the cornea healed, the photosensitive effect was gone, though I feel less tolerant to bright sunlight these days.

You mention microcysts, presumably on the basement membrane, so does this mean that you suffer from epithelial basement membrane dystrophy (EBMD)?

I'm sorry that I cannot shed light (sorry about the pun) on a solution to your problem, but I certainly feel for what you are going through.

--Liz

[Tempestuous]

Hi Liz,
thanks for your words.

Yes - RCE, EBMD, MGD & dry eye confirmed.
Recently acquired 'severe' raynauds with blood tests indicating an associated autoimmune response. Currently awaiting referral to a rheumatologist for further testing for the likes of sjogrens.

Rebecca was somewhat prophetic when she postulated '...more than RCE' after my first post!

[Rebecca Petris]

Wow. This is very interesting. I've never run across that particular pattern before but I am always coming across more 'firsts'.

In general I would not expect ophthalmologists, even good ones, to really "get" corneal photophobia, let alone this very unusual relationship between it and erosions. Only a handful have dealt with apparently healthy corneas that have extreme reactions to light.

My instinct would be to set aside the erosion cause-and-effect question for the moment and tackle this the same way you would any other extreme photophobia. I have known many people with photophobia so severe it trapped them in a dark bedroom for years. But this is solveable. The two solutions I know of are moisture chambers and sclerals.

What I would try first would be 7Eye or Wiley-X with a perfectly fitting frame so that you have a complete seal, so that NO peripheral light at all is entering, and with the darkest lenses they make. Actually come to think of it you will probably need darker lenses than either of those manufacturers make so you could just get a frame and get some lenses from a local optician. While no one loves living in those 24x7, it's a lot better than being trapped indoors. Many with severe dry eye live in glasses of that kind. If you've already tried the things I'm suggesting, email me, maybe we could talk and brainstorm about other possibilities.