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Hi Everyone.
1. I'm going to try to be succinct here.
I dealt with low-level dry-eye symptoms for 15 years. I self-medicated with refresh tears. I found myself using them more and more. Symptoms got worse--a lot worse--in 2020 at the height of COVID. I was on computers and screens even more than usual. 10-12 hrs a day. I was at the end of my rope and finally got checked out. I couldn't even produce emotional tears one night. Totally dry and terrified. 10-12 opto and ophtals later and I find I have many of the hallmarks of dry eye, and am deep into a year of treatment.
What they found:
-Gland atrophy at the tails of the glands. Tortuosity at tails (twisting, etc). Not a ton of dropout. Lower lid glands seem shortened, stunted.
-MG Expression produced thick, waxy, toothpaste from all four lids, indicating most/all were dysfunctional. Some didn't even produce anything at all.
-Schirmers was 0 in one eye, very low in other. Indicating extremely low tear-volume.
-TBUT 2-5 seconds in each eye. Bad/inconsistent breakup patterning.
-Scans of ocular surface revealed very low levels of lipid in whatever tear film was there.
-Classic signs of MGD and aqueous deficiency.
What I've done:
-12 IPLs
-Probing all 4 lids
-Every kind of drop including serum, PRP, Regenereyes, Restasis, Xiidra, etc.
-Doxy orally. Low and high doses.
-Plugs in all 4 lids
-Neopolydexa ocular ointment
-AIP Diet (60 days with no drastic improvement) I already eat quite healthy and have for a long time. Gluten Free.
-All the supplements, omegas, etc that exist.
-Goggles/glasses/etc etc. I've worn them all. Worked for a while but gave me skin infection around eyes because of all the moisture.
-My minimalist daily regimen-see below.
Where I am now:
-1 plug in each eye (2 total)
-IPL/MGX monthly continues to produce cloudy, waxy expressions. My glands are somewhere in between. They certainly haven't just "bounced back." Inflammation still there. Some improvements from this though.
-TBUT slightly improved. Not much.
-Still have pangs of discomfort, especially in the morning, throughout the day, and worst at night. My daily routine has helped me from the worst pains.
What I do daily:
-I use a fairly unconventional approach now, which I absolutely cannot recommend for anyone else, but I will describe it since it is THE ONLY thing that works for me right now. As many of you know it's always changing. And every intervention has its own side effects. This could easily become intolerable in a few weeks. I'm praying it continues to work.
-Hot compress morning and night. 1-2x each. 10-15 min.
-Proclear Sphere contacts. No vision correction. These were prescribed to me as a 'bandage lens.' They are the only thing that gives me relief during the day and keeps the pangs of stinging and itching to a minimum. I never wore glasses or contacts before. These are not meant to be worn long term. But I have been wearing them and cleaning them (do not wear at night) each day for several months and they are the only thing that works for me. I asked my doc if this is okay and he said as a last resort, 10 of his patients wear them daily, beyond the 2 week 'bandage period'.
-I use the proclear sphere in a unique way that I absolutely cannot recommend, but it works for me. I use non-preserved saline tears to keep my eyes wet during the day, and apply a dab of refresh pm mineral oil/petrolatum ointment to my lid margin, blinking it across surface of my eye and the contact as the oil supplement, probably once every few hours a day, and every time I wake up at night. (Note I do not wear contacts at night.) I wake up in great pain and dryness each night, every time I wake up.
-So really I'm just continuing to see my opthal, get periodic IPLs, and doing this regimen with the proclear contacts and unconventional tear supplement. I've cut out all other drops and regimens except occasional PRP and regenereyes, which feel neutral and supplement the watery part of the tear.
2. Now for the Twist -- Is this contagious?
-12 months ago my partner started experiencing plugged meibomian glands and dry-eye symptoms. Dry eye in one eye, pretty much similar to the symptoms I've always associated with the condition. Dry, itching, burning, stinging. I immediately recommended her to one of my docs. She got all the scans, all the info. She has MGD. Not as bad as I did when I went in, but definitely a cause for concern.
-She started getting IPL/MGX. Lots of blocked glands. Inflammation. Sore lids, etc. She's had a couple treatments and her eyes are seeming quite stubborn.
-We both experienced the absolutely worst of this at the height of COVID, when we were both on our computers more than ever before, for days on end.
-We both have fair, somewhat temperamental skin.
-Are we experiencing the result of reduced blink rate/ and computer vision syndrome and all of its attendant effects, or did I somehow infect her meibomian glands with some kind of pathogenic bacteria from mine? I know this question has been asked before but it's always in the context of a lot of mucosal/conjunctival discharge. We don't experience that pattern; just blockage of MGs, dryness, MGD, etc etc.
As you can imagine this has put me into a major cycle of depression over the past few years. I cannot even begin to explain what that has put me up against within myself but it goes without explaining for many of you who have been through the same/worse. I have sought refuge in a Chronic Pain Zoom group, sometimes a daily practice for me, and enlisting the support of trusted friends, family, and therapists in order to prevent myself from navigating into the most impenetrable despair brought on by this condition. I'm still able to work with the modifications above, and do some of the things that brought me joy before I had my lowest low.
Now I'm facing the burden of guilt that somehow my partner's condition is somehow connected to my own... if not simply by common sources of risk factor, but even something more sinister such as infection.
Please share your thoughts and godspeed to anyone dealing with this. It's broken and rebuilt me as a person each day, many times over, for years now. I continue to feel that I am fighting for the simple condition of existing, and it takes me everything I have to muster that but the degree to which this has opened me emotionally to others must have some kind of silver lining.
Thank you.
-A
1. I'm going to try to be succinct here.
I dealt with low-level dry-eye symptoms for 15 years. I self-medicated with refresh tears. I found myself using them more and more. Symptoms got worse--a lot worse--in 2020 at the height of COVID. I was on computers and screens even more than usual. 10-12 hrs a day. I was at the end of my rope and finally got checked out. I couldn't even produce emotional tears one night. Totally dry and terrified. 10-12 opto and ophtals later and I find I have many of the hallmarks of dry eye, and am deep into a year of treatment.
What they found:
-Gland atrophy at the tails of the glands. Tortuosity at tails (twisting, etc). Not a ton of dropout. Lower lid glands seem shortened, stunted.
-MG Expression produced thick, waxy, toothpaste from all four lids, indicating most/all were dysfunctional. Some didn't even produce anything at all.
-Schirmers was 0 in one eye, very low in other. Indicating extremely low tear-volume.
-TBUT 2-5 seconds in each eye. Bad/inconsistent breakup patterning.
-Scans of ocular surface revealed very low levels of lipid in whatever tear film was there.
-Classic signs of MGD and aqueous deficiency.
What I've done:
-12 IPLs
-Probing all 4 lids
-Every kind of drop including serum, PRP, Regenereyes, Restasis, Xiidra, etc.
-Doxy orally. Low and high doses.
-Plugs in all 4 lids
-Neopolydexa ocular ointment
-AIP Diet (60 days with no drastic improvement) I already eat quite healthy and have for a long time. Gluten Free.
-All the supplements, omegas, etc that exist.
-Goggles/glasses/etc etc. I've worn them all. Worked for a while but gave me skin infection around eyes because of all the moisture.
-My minimalist daily regimen-see below.
Where I am now:
-1 plug in each eye (2 total)
-IPL/MGX monthly continues to produce cloudy, waxy expressions. My glands are somewhere in between. They certainly haven't just "bounced back." Inflammation still there. Some improvements from this though.
-TBUT slightly improved. Not much.
-Still have pangs of discomfort, especially in the morning, throughout the day, and worst at night. My daily routine has helped me from the worst pains.
What I do daily:
-I use a fairly unconventional approach now, which I absolutely cannot recommend for anyone else, but I will describe it since it is THE ONLY thing that works for me right now. As many of you know it's always changing. And every intervention has its own side effects. This could easily become intolerable in a few weeks. I'm praying it continues to work.
-Hot compress morning and night. 1-2x each. 10-15 min.
-Proclear Sphere contacts. No vision correction. These were prescribed to me as a 'bandage lens.' They are the only thing that gives me relief during the day and keeps the pangs of stinging and itching to a minimum. I never wore glasses or contacts before. These are not meant to be worn long term. But I have been wearing them and cleaning them (do not wear at night) each day for several months and they are the only thing that works for me. I asked my doc if this is okay and he said as a last resort, 10 of his patients wear them daily, beyond the 2 week 'bandage period'.
-I use the proclear sphere in a unique way that I absolutely cannot recommend, but it works for me. I use non-preserved saline tears to keep my eyes wet during the day, and apply a dab of refresh pm mineral oil/petrolatum ointment to my lid margin, blinking it across surface of my eye and the contact as the oil supplement, probably once every few hours a day, and every time I wake up at night. (Note I do not wear contacts at night.) I wake up in great pain and dryness each night, every time I wake up.
-So really I'm just continuing to see my opthal, get periodic IPLs, and doing this regimen with the proclear contacts and unconventional tear supplement. I've cut out all other drops and regimens except occasional PRP and regenereyes, which feel neutral and supplement the watery part of the tear.
2. Now for the Twist -- Is this contagious?
-12 months ago my partner started experiencing plugged meibomian glands and dry-eye symptoms. Dry eye in one eye, pretty much similar to the symptoms I've always associated with the condition. Dry, itching, burning, stinging. I immediately recommended her to one of my docs. She got all the scans, all the info. She has MGD. Not as bad as I did when I went in, but definitely a cause for concern.
-She started getting IPL/MGX. Lots of blocked glands. Inflammation. Sore lids, etc. She's had a couple treatments and her eyes are seeming quite stubborn.
-We both experienced the absolutely worst of this at the height of COVID, when we were both on our computers more than ever before, for days on end.
-We both have fair, somewhat temperamental skin.
-Are we experiencing the result of reduced blink rate/ and computer vision syndrome and all of its attendant effects, or did I somehow infect her meibomian glands with some kind of pathogenic bacteria from mine? I know this question has been asked before but it's always in the context of a lot of mucosal/conjunctival discharge. We don't experience that pattern; just blockage of MGs, dryness, MGD, etc etc.
As you can imagine this has put me into a major cycle of depression over the past few years. I cannot even begin to explain what that has put me up against within myself but it goes without explaining for many of you who have been through the same/worse. I have sought refuge in a Chronic Pain Zoom group, sometimes a daily practice for me, and enlisting the support of trusted friends, family, and therapists in order to prevent myself from navigating into the most impenetrable despair brought on by this condition. I'm still able to work with the modifications above, and do some of the things that brought me joy before I had my lowest low.
Now I'm facing the burden of guilt that somehow my partner's condition is somehow connected to my own... if not simply by common sources of risk factor, but even something more sinister such as infection.
Please share your thoughts and godspeed to anyone dealing with this. It's broken and rebuilt me as a person each day, many times over, for years now. I continue to feel that I am fighting for the simple condition of existing, and it takes me everything I have to muster that but the degree to which this has opened me emotionally to others must have some kind of silver lining.
Thank you.
-A
Of all the things to be burdened with, any feeling of guilt is definitely something to let go of! You may have some contributing factors in common, that's all. There are an awful lot of people whose 'trigger' into more serious symptoms has been increased computer use due to Covid.
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