Blinking pain misery - please help

[hopeful_hiker]

In late March my dry eye symptoms morphed into a new stage. Despite better signs, I have developed moderate to severe blinking discomfort. It caused me a lot of stress, panic attacks, and ironically tears (from sadness, not basal tears,of course).

I just don’t get it.

If anything, my eyes are a bit better now based on signs and disappearance of other symptoms. However, when I blink I feel very unpleasant friction. Kind of said my eyelid margin is rough (rubber like) or as if I have no tear film. Strangely, I see no difference between my left eye and my right eye even though the left one is drier.

I blink manually a lot of the times now, especially in dry places. I kind of squint and then blink. Even when I yawn and have tears pooling on the lower eyelid, my blinks are still very uncomfortable.

When my eyes are closed, they are ok, and when they are open they are usually ok except for very windy or dry places (malls and heated places).

I am going crazy because I don’t understand what is happening and how to make it better. In the winter my eyes were worse but blinking was fine.

Any ideas on what it could be?

A bit of background:

-No corneal abrasion or skid marks
-Dry spots in the left eye
-TBUT 5-6s (left); 7-8s (right)
-Schirmer’s: 20+mm (without anaesthetic)
-Tear meniscus: 0.2-0.3mm (left); 0.4-0.45mm (right)
-Used to have partial blinking, now better but I hate blinking
-Inflammadry - low positive
-Glands intact or mostly intact but blocked (some) despite daily warm compresses

-Negative autoimmune blood work and biopsy
-Possible rosacea

[farmgirl]

Have you been offered any kind of MGD treatment like lipiflow or IPL, probing et to get the glands working better?

[hopeful_hiker]

farmgirl, so far no. One place has IPL but the doc says my glands are not too bad. He believes inflammation is my biggest thing.

Other doctors say I have blocked glands and a bit of dropout in the left eye but not bad enough to warrant lipiflow.

I think they underestimate my discomfort. They always mention that it’s expensive but I don’t care about money at this point because my quality of life is suffering.

Have you done IPL?

[Guest]

farmgirl, so far no. One place has IPL but the doc says my glands are not too bad. He believes inflammation is my biggest thing.

Other doctors say I have blocked glands and a bit of dropout in the left eye but not bad enough to warrant lipiflow.

I think they underestimate my discomfort. They always mention that it’s expensive but I don’t care about money at this point because my quality of life is suffering.

Have you done IPL?

I think I know what you're talking about, I had the same thing let me describe. It felt like something abrasive was stuck on my eyelids scraping at my eye. I couldn't fully blink because it gave me such discomfort. Sound similar? You probably have inflammation but your glands are most likely so clogged, you're feeling the pressure of the lid because it's thicker now. You following me?

Do you do hot compress with one one of those beaded compresses you put in a microwave? If I were your doctor, and I'm not a doctor, I would suggest this...

hot compress 2x per day, not too hot, I'm OCD so I use a laser thermometer and never go over 117F

Avemova 2x per day right after compress spray directly on eyes then wipe off with cotton round

alrex 2x per day

azasite 1x per day after compress and lid scrub for two weeks.

I'm assuming you have MGD moderately bad. Good luck let me know what happens.

[hopeful_hiker]

It felt like something abrasive was stuck on my eyelids scraping at my eye. I couldn't fully blink because it gave me such discomfort.

Thank you for the response! That definitely sounds familiar. I would always get a sore spot in my right eye by the end of the day. The lasts optometrist I saw said he noticed hordeola in that area and blocked glands.

In addition to that, I have friction sensation as if my eyelids are not smooth or the eye is complete dry— but it only happens with regular blinks. If I blink slowly or close my eyes I do not feel the roughness.

I have low grade inflammation according to inflammadry (I use Xiidra and Restasis for 2 and 3 months respectively).

Did you feel relief after warm compresses? How could you tell they did something? I do the compress once daily atm.

Avenova is a good idea. I used to have huge swollen eyelids in the winter, they were inflamed but not anymore (fingers crossed).

[Guest]

Ok, I did my compress wrong for months...but bottom line, you will know when you express them properly. I got a giant load of what felt like elmers glue Coke out of my glands and my eyelashes were glued to each other. That happened for 6 compresses before the stickiness disappeared and my symptoms were drastically reduced. You sound just like me that's why I commented. You gotta get a beaded compress like the bruder hot compress and make sure you temp that thing or at least check in on your wrist first. If it doesn't burn your wrist, it shouldn't burn your eye. Remember, you have to get the back of the lid to 104F like lipiflow...since you have to get through muscles and vasculature, you need that compress around 117F.

[hopeful_hiker]

Dowork123, I got Bruder’s mask but I struggle to find the right temperature. I think I will get a laser thermometer. Sounds so sci-fi

Did you feel better in humid places when you had the blinking problem? At 60%+ relative humidity.

I am thinking of lipiflow or IPL because I don’t think the compress is helping even though I do not have many blocked glands and the oils are fine once expressed (according to the doc anyway).

[Guest]

I feel like your doctor is either not explaining his findings well, or you may have something else going on. It's hard to know without seeing your eyes/lids. My meibum was like toothpaste and slightly foamy with a few blocked glands. Once I got the heat on the compress right, everything changed. Are you putting anything between your eyes and the mask like a cotton round? If so, do not do that...that's the mistake I made and it lowered the temp of the mask too much to penetrate my lids. All that said, lipiflow may work for you but again, I'm curious why your doc is saying it's no big deal, couple plugged glands and normal oil shouldn't be causing you such pain. So either he's wrong or something else is at play.

[farmgirl]

Do you wear moisture chamber glasses like Wileyx or 7Eye to protect your eyes from air movement outside and in buildings?

[hopeful_hiker]

So either he's wrong or something else is at play.

That’s what I am trying to figure out... other doctors said I had more blockages so I suppose the consensus is the glands are alive mostly but enough of them are blocked to lead to some discomfort.

I am worried I might have lid wiper epitheliopathy (LWE).

farmgirl, yes, I do have Ziena glasses and I wear goggles when cycling. They don’t help much in dry places like some grocery stores, for instance.

[MGD1701]

unblock glands can give you relief. Most effective is LipiFlow, what I have read, which helped me too.
If glands are clogged, warm compress wont help much - we are not skillful to remove thick stuff out.

Hope you will find more relief soon & good luck!

[farmgirl]

I am going for IPL at the end of month. I have only 3-4 glands expressing uppers and virtually none expressing on lowers. (little wonder they bother me.) The ones I do have are stunted....sigh

If I were you I would try it regardless.

[Hokucat]

Hopeful, one thing that helped me with the discomfort of severe dry eyes, when my tear film was virtually non-existant for over two years, was using Genteal Severe Eye Gel. For me it gave my eyes and lids a smooth, moist feeling. It's longer lasting than drops, but not as thick as ointments. It was the only drop/gel that made me feel a little better, and honestly the main thing that helped me get through those toughest years of my life. I used it during the day, and also a few drops right before bedtime.

https://dryeyeshop.com/products/genteal-gel

[Guest]

That’s what I am trying to figure out... other doctors said I had more blockages so I suppose the consensus is the glands are alive mostly but enough of them are blocked to lead to some discomfort.

I am worried I might have lid wiper epitheliopathy (LWE).

farmgirl, yes, I do have Ziena glasses and I wear goggles when cycling. They don’t help much in dry places like some grocery stores, for instance.

So all I can do again is give you my story...cause it was odd and made zero sense until just recently, 6 months post abrasion. Ok so I push my garbage can down and get potting soil in my eyes, had no clue this event would change my life forever. I didn't end up with scratches for a week. So I had this stuff I didn't even feel go into my eye stuck behind the lid just scraping my cornea for days. finally go in and they say you have abrasions, I couldn't even remember the garbage can incident, until later. So I'm like wtf is going on here. They're staining and telling me ok, lacrilube, BCL, see me in 3 days. 3 days go by, he says it's not healing, you're having recurrent corneal erosions. Then the pain started, oh god the pain only we as dry eye sufferers can understand. That's when my life changed forever.

i couldn't make sense of it, we ended up taking a different route, no more moisture like lacrilube, just artificial tears, doxy and lotemax. Still no help bevcuse she didn't notice the MGD. she finally said you have EBMD or map dot fingerprint dystrophy. I couldn't believe it understand the diagnosis I was so depressed and anxious...suicidal as well. No relief for 3 months then we address my MGD at my 3rd specialist, got me from suicidal to just hating my life. So from pain of 10 down to 5 but still very painful, burning, stinging, foreign body sensation. We do autoimmune tests, all negative. So he gives me alrex and restasis. This is where I FINALLY felt like I did when I wore contacts, dry, annoying, but 80% of the time manageable. But still, foreign body exactly where the injury occurred. This is why I'm like, there's more to my ocular surface sensation than JUST dry eye. But everyone said, corneas clear, no staining, you're good. But I'm still not good.

Dr Cremers in a video said if you notice your eyes at all, you're creating scar tissue. Well I feel my eyes most of the day. So is she correct for my case? Maybe, maybe not!

So why do I still have foreign body sensation on the areas where there was damage? Couldn't get an answer but now I think I have it. My epithelium didn't heal properly, the cells clumped up because of my dystrophy. So anywhere there was healing, it healed incorrectly. So I believe this sensation is just part of my life now. I could do a debridement, but I just feel like it's more damage to the eye. Luckily I've only had one erosion and that was on the left eye, very mild, luckily. But that's the eye I had debridement on already. Again, in the beginning I was so desperate and confused I had no clue. So I let her scrape the eye. But I had a poor outcome because she didn't address the MGD and tear film. This is a lot to write, lol, but I did it to show you every single dry eye case is unique. Mine is very unique, couldn't find another example like me on the internet so I was looking at prk stories, probably a bad idea, but it was the closest type of epithelial damage I could find.

Anyway, my point is keep plugging away at it, find another dr, get all the tests done you can, get a meibeview/lipiview, ask your doctor to look for dystrophies, EBMD is apparently hard to spot sometimes. So keep going...I'm very lucky I'm retired at 38. I have all the time and money in the world to try to fix this. I wish everyone else had the same, hard living with this issue.

Im going to open up more here, I am currently addicted to hydrocodone and xanax because of this injury. I could not cope, I had a new daughter, pain like I'd never thought a human could ever feel and I was desperate. I'm slowly tapering the hydro and will eventually come off the xanax as well (hopefully). But I wouldn't have survived without the drugs at first...I would have killed myself without some kind of relief. Regardless, things are getting better, I'll never be perfect, but I think I still have some healing to do.

[hopeful_hiker]

Anyway, my point is keep plugging away at it, find another dr, get all the tests done you can, get a meibeview/lipiview, ask your doctor to look for dystrophies, EBMD is apparently hard to spot sometimes. So keep going...I'm very lucky I'm retired at 38. I have all the time and money in the world to try to fix this. I wish everyone else had the same, hard living with this issue.

Im going to open up more here, I am currently addicted to hydrocodone and xanax because of this injury. I could not cope, I had a new daughter, pain like I'd never thought a human could ever feel and I was desperate. I'm slowly tapering the hydro and will eventually come off the xanax as well (hopefully). But I wouldn't have survived without the drugs at first...I would have killed myself without some kind of relief. Regardless, things are getting better, I'll never be perfect, but I think I still have some healing to do.

Thank you for sharing your story! I am sure you will be able to get of Xanax because although it is a physical/psychological issue, dependency is still something you can eventually control. I don't think you can go cold turkey so be careful.

I was on Ativan for a few months to control panic attacks thanks to my dry eye and tinnitus. I think these drugs are invaluable when you are losing your mind and becoming suicidal. Antidepressants really messed me up (tried them for two weeks in a row, plus a few trials here and there). I found benzos better because I only used them when I needed them.