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Hi. I've been lurking for awhile and found the info posted very helpful and wanted to be able to share info too.
I suspect my dry eye is related to an inherited disorder that also causes a lot of other symptoms, based on family members with same problems.
In childhood I had a few bouts of pink eye and awoke a few other times with extremely swollen upper and lower lids. My father (a physician) thought it was allergies. Then as at 13 I tried contact lenses and couldn't adjust to them. The eye doctor thought I wasn't getting enough oxygen through them. I tried other types of contacts a couple of times, years later, also with no success so gave up. There were 3 weeks, at age 22, that I had no eye- stinging while spending 3 weeks in the Appalachian Mtns in which it rained lightly all day every day. Until then I didn't even realize that my eyes had stung all of my life. I was on a special diet at the time and thought the change in diet was what helped, but now I think it was all that rain.
In early 30's I had a bad bout of "allergic conjunctivitis" but other medical problems appeared (unrelated to allergies) and I doubt the eye flare-up was coincidental.
Then at age 35 I had a horrible spell with eye pain, discharge, dryness and redness and after a few months on unsuccessful meds for infection I insisted on a referral to an opthalmologist. He diagnosed Superior Limbic Keratoconjunctivitis (SLK), Intraocular Hypertension and Blepharitis. After 6 long mos on hourly lubricating drops, nighttime Refresh PM and Acular, with bi-weekly visits to have filaments scraped off my eyes by the doc, my eyes were almost back to normal. He had me continue the regimen, saying it would all come back otherwise. I still often had discomfort when driving with eyelids feeling very heavy.
Then a couple of years ago, after about 13 years, things started getting much worse. eyes were always uncomfortable and I had spells of a deep stabbing pain in eyes and episodes in winter of spells of pain and bluriness and when I looked in the mirror there was a fold horizontally across my eyeball. Eyelids were purple-red all of the time and the filaments were back. Unlike the previous filaments, these would go away on their own eventually with time and tons of lubrication. My vision was poor and it was very hard to read, but vision fluctuated so much that an eye exam for new glasses would be pointless. The opthalmologist was no help. He just said it's the SLK and there's nothing more that could be done. It didn't feel the same as before with an SLK flare-up and the superior area of the eye wasn't red, so I finally saw a different opthalmologist. The old one had dismissed my concerns that the problem was dry eye, saying SLK causes some dryness. Right when I was waiting to see the new Opth. my eyes became severely painful and while seeing him I developed bad redness and soreness on the inside of the lower lid.
It turned out, after referrals to 3 other doctors (corneal specialist, allergist, dermatologist) that I no longer have SLK. But I do have dry eye, allergic dermatitis, allergy to some eyedrops and Glaucoma. I patch-tested as allergic to Formaldehyde and Quaternium-15, which are in a lot of cosmetics, toiletries (even Aveeno brand and Johnson's Baby Shampoo) and household cleaners. I knew I was allergic to Cocoa Butter but hadn't known that it's not just in lotions, creams and soaps, but is also in some cosmetics and foods. I suspect that menopause is part of the reasons my eyes started getting so much worse this past year. But my other health problems (Fibromyalgia, Erythromelalgia, some mystery disorder) also were much worse the past year so it could be related to that.
I threw out the allergan chemicals, the Acular, stopped Restasis that I tried for a couple months (was allergic), found OASIS Tears (here. thank you!), started using warm compresses and humidifier (which previous doctor never mentioned), started Ocusoft for scrubs (thank you again!), replaced Xalatan for my Glaucoma (allergic), stopped cosmetics, and feel considerably less pain. Inside of lids is back to their normal color and not so sore. Upper lids are too pink/lavender and a little sore but much improved.
Unfortunately, if I go one day without the humidifier my eyes really hurt and I have the painful filaments. But I haven't figured out how to keep the humidifier clean enough to not grow slime and have to be thrown out (slime burns the eyes). I'm thinking I may need 3 humidifiers to alternate between so can give them time to really thoroughly dry between use, after cleaning and bleaching. I'm sure the bleach fumes aren't great for the eyes either.
Any advice about humidifiers would be welcome.
Mary in VA
I suspect my dry eye is related to an inherited disorder that also causes a lot of other symptoms, based on family members with same problems.
In childhood I had a few bouts of pink eye and awoke a few other times with extremely swollen upper and lower lids. My father (a physician) thought it was allergies. Then as at 13 I tried contact lenses and couldn't adjust to them. The eye doctor thought I wasn't getting enough oxygen through them. I tried other types of contacts a couple of times, years later, also with no success so gave up. There were 3 weeks, at age 22, that I had no eye- stinging while spending 3 weeks in the Appalachian Mtns in which it rained lightly all day every day. Until then I didn't even realize that my eyes had stung all of my life. I was on a special diet at the time and thought the change in diet was what helped, but now I think it was all that rain.
In early 30's I had a bad bout of "allergic conjunctivitis" but other medical problems appeared (unrelated to allergies) and I doubt the eye flare-up was coincidental.
Then at age 35 I had a horrible spell with eye pain, discharge, dryness and redness and after a few months on unsuccessful meds for infection I insisted on a referral to an opthalmologist. He diagnosed Superior Limbic Keratoconjunctivitis (SLK), Intraocular Hypertension and Blepharitis. After 6 long mos on hourly lubricating drops, nighttime Refresh PM and Acular, with bi-weekly visits to have filaments scraped off my eyes by the doc, my eyes were almost back to normal. He had me continue the regimen, saying it would all come back otherwise. I still often had discomfort when driving with eyelids feeling very heavy.
Then a couple of years ago, after about 13 years, things started getting much worse. eyes were always uncomfortable and I had spells of a deep stabbing pain in eyes and episodes in winter of spells of pain and bluriness and when I looked in the mirror there was a fold horizontally across my eyeball. Eyelids were purple-red all of the time and the filaments were back. Unlike the previous filaments, these would go away on their own eventually with time and tons of lubrication. My vision was poor and it was very hard to read, but vision fluctuated so much that an eye exam for new glasses would be pointless. The opthalmologist was no help. He just said it's the SLK and there's nothing more that could be done. It didn't feel the same as before with an SLK flare-up and the superior area of the eye wasn't red, so I finally saw a different opthalmologist. The old one had dismissed my concerns that the problem was dry eye, saying SLK causes some dryness. Right when I was waiting to see the new Opth. my eyes became severely painful and while seeing him I developed bad redness and soreness on the inside of the lower lid.
It turned out, after referrals to 3 other doctors (corneal specialist, allergist, dermatologist) that I no longer have SLK. But I do have dry eye, allergic dermatitis, allergy to some eyedrops and Glaucoma. I patch-tested as allergic to Formaldehyde and Quaternium-15, which are in a lot of cosmetics, toiletries (even Aveeno brand and Johnson's Baby Shampoo) and household cleaners. I knew I was allergic to Cocoa Butter but hadn't known that it's not just in lotions, creams and soaps, but is also in some cosmetics and foods. I suspect that menopause is part of the reasons my eyes started getting so much worse this past year. But my other health problems (Fibromyalgia, Erythromelalgia, some mystery disorder) also were much worse the past year so it could be related to that.
I threw out the allergan chemicals, the Acular, stopped Restasis that I tried for a couple months (was allergic), found OASIS Tears (here. thank you!), started using warm compresses and humidifier (which previous doctor never mentioned), started Ocusoft for scrubs (thank you again!), replaced Xalatan for my Glaucoma (allergic), stopped cosmetics, and feel considerably less pain. Inside of lids is back to their normal color and not so sore. Upper lids are too pink/lavender and a little sore but much improved.
Unfortunately, if I go one day without the humidifier my eyes really hurt and I have the painful filaments. But I haven't figured out how to keep the humidifier clean enough to not grow slime and have to be thrown out (slime burns the eyes). I'm thinking I may need 3 humidifiers to alternate between so can give them time to really thoroughly dry between use, after cleaning and bleaching. I'm sure the bleach fumes aren't great for the eyes either.
Any advice about humidifiers would be welcome.
Mary in VA
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