Feedback! (Long, sorry)

[Steve]

Hi again, all! Sorry to be away so long...

I've been working hard to try to fix these eyes, and frankly they're not improving much. I've pretty much decided, from lots of reading and from the few answers I got, that I have posterior blepharitis (pretty obvious when I look inside my lower lids) and MGD. Probably from too much computer time.

Meanwhile, I've tried:
* More tuna and Omega-3 oils (3 capsules daily)
* More balanced diets (formerly high-protein low-carb, now normal)
* Daily facecloth hot compress in hot running water
* Daily Q-tip cleaning of eyelids
* Daily scrubs with baby shampoo and makeup pads
* Daily facecloth hot compress in hot nuked Brita water (thanks Kakinda)
* Less computer time daily
* Many different eyedrops
** Dakrina and NutraTear HURT and make it worse, sorry
** Most eyedrops with preservatives irritate
** So do Visine preservative-free
** So do most of the others I've found in Sweden
** Saline rinses are irritating but good for when everything is awful.
** Visine Nighttime gel drops still work and are not too bad (but blurry)


Here's the big problem: I don't really know which of these is working or how well. The feedback from most of them is inconsistent. And I have at least 2 problems to watch for: irritation/redness under the eyelids, and irritation of the cornea.

What I'd really love is some way to know which treatments are working, which are making it worse, which make the eyelids worse and the eyes better, and vice versa. Which are totally irrelevant, which help but only for a few minutes, and which make it worse for a few minutes but then better afterwards.

And even more than that, if I really do have clogged Meibomian Glands, I want some way to know when I've succeeded at unclogging them! Even momentarily. I know when I've popped a pimple, but I have no idea if my compresses and eye wipes have cleared those glands or not. And if the irritation to the lids and eyes was worthwhile. If I knew that, I'd be ok.

Who knows how to check? Anyone with experience logging these things? How long after a treatment should one check, and which signs are best to look for?

This has got to be sorted or I remain confused...

[CarolynYvonne]

I sympathize, Steve

Hi Steve,
I am really new to this; just diagnosed with meibomitis sometime within the last month. I joined this board the same day or next day I think. I have some of the same questions but precious few answers. I guess I just wanted to encourage you to try and keep your hope up. Something has to work and I feel sure you will find the right combination. I'll send up a prayer for you now. I wish I were more knowledgeable and could answer some of your questions but I just don't know enough about all this yet. Let us know if you figure out what is helping or not helping, etc.

One thing I do know has helped me; the encouragement of everyone here on this board. Thanks to all.

CarolynYvonne

[Rebecca Petris]

What I'd really love is some way to know which treatments are working, which are making it worse, which make the eyelids worse and the eyes better, and vice versa. Which are totally irrelevant, which help but only for a few minutes, and which make it worse for a few minutes but then better afterwards....

Who knows how to check? Anyone with experience logging these things? How long after a treatment should one check, and which signs are best to look for?

I think this is a problem for a lot of people here. When you're using a lot of treatments, there is just no good way to sort it all out.

My personal opinion is something like this:

First eliminate everything you possibly can without going crazy (and without going against doctor's advice).

Stay like that for a couple of weeks.

Take the OSDI questionnaire or similar. If possible, get a thorough exam with TBUT and careful examination of lid margins.

Change ONE variable. (Add or remove a treatment.) And do it consistently, the same way every day.

Stay like that for at least two weeks. Repeat OSDI and exam; preferably at about the same time of day as before.

That's just my opinion, and I'm sure many people would not find it practical.

[Steve]

Well, that's a better idea than my current flailing about....

But I don't know if I'd have the patience. I shall be more disciplined. Thank you , Rebecca!

What about seeing if the meibomian glands are actually being unclogged? Any tips?

[neil0502]

a good eye doc can verify this with light. if you are clogged, they may try doxy and or hot compress and lid expression.

[kaypeeoh]

When I was using heat followed by milking the glands with swabs, I would see plugs come out. Not that I recommend it, but I (carefully!) used a hemostat to pinch the lower lids and drive more of the dried plugs out.

[Rebecca Petris]

When I do a warm compress, I can feel oil coming out.

In an exam... it's kind of touchy-feely and answers about what things look like up there and what's working or not seem to vary a lot. There is a test called meibography. Hard to find someone who knows much about it though, even here in the US. It is one of my frustrations with dry eye diagnosis that I don't think there is a lot of knowledge or consistency in lid margin examinations out there. With an experienced doc you should be able to get them to express the glands manually in their office and tell you what they're seeing.

[neil0502]

As always...of late....briefly:

There IS a secret cabal of the Best Dry Eye Specialists in the World. It's called the Dry Eye Workshop/Tear Film & Ocular Surface Society. I think it's a little like Yale's Skull and Bones.

Here's a link to their website: www.tearfilm.org

TRY, TRY, TRY to be seen by one of the doctors who's on this team (No EASY way to do this by region, but here's a place to START

http://www.tearfilm.org/content/msaboard.html

Google a few. Call a few more. Ask who works NEAR you. THESE folks make up the standards, compare notes, share best practices, and MOVE OUR CAUSE FORWARD.

No offense to the scads of well-meaning OD's and MD's out there, but...by and large...they're not in the loop. This IS the loop.

Is this list the be-all-and-end-all? No. Sure not. But use it as a place to start when you're local doc has kicked you to the curb, recommending lube drops and a hefty co-pay.

GOOD LUCK, ALL!!!!

[Steve]

Thanks, all!

If I've ever had plugs or oil coming out, I haven't seen it (except maybe once.)

Not sure if any docs here are interested in helping out, maybe I'll try again in another country if I can get to one.

[Steve]

Thanks, Neil!

Now I too can be in the loop!

[np1981]

That was a good site, thanks Neil.

[monamour]

steve

Steve: You said it is pretty you have posterior blepheritis, when you look inside your lower eyelids. What is it you see that determines that when you look under your lower eyelida? In other words, how do you determine this? Thanks for your response.

[Steve]

How do I know?

Steve: You said it is pretty you have posterior blepheritis, when you look inside your lower eyelids. What is it you see that determines that when you look under your lower eyelida? In other words, how do you determine this? Thanks for your response.

When I look under my lower eyelids, I see that they are bright red when I'm feeling sore, versus a healthier pink otherwise. Also I can see this without touching them -- the lids look a bit red-rimmed and swollen. Drops don't seem to affect this symptom, at least not for the better. Some make it worse.

It's posterior because both the forms of anterior blepharitis have symptoms that I really don't have: http://www.agingeye.net/otheragingeye/blepharitis.php

The reasons I think it's MGD are:
1. My doc said so
2. Posterior blepharitis appears to be tied to MGD
3. Heat really helps sometimes

By the way, recently I've found a treatment that seems to help for up to 12-24 hours. I'll post it on a new thread. I still don't know if it clears the Meibomian glands though.

Also, CarolynYvonne -- thanks for the sympathy!

[Steve]

A treatment that's helping!

This treatment seems to help my red eyelids (and doesn't hurt the corneas).

I take a shower. Before stepping out, I turn the water as hot as I can stand, take the showerhead off the wall on its hose, and squirt it into my closed eyes. I keep it there, moving a bit back and forth to feel it on the eyelids, until it doesn't feel so hot any more.

Then I turn the water a little hotter and continue.

About a minute or two of this and I come out with a face as red as a lobster.

But within 10 minutes, my red eyelids have gone back to healthy pink.

I'm still not sure if running a Q-tip along the eyelid after this is a plus or a minus or does nothing.

[Silverlady]

Could be dangerous

If you have a shower like I do (wall mounted demand waterheater) it would be dangerous to do this. My water will suddenly turn much hotter than I have set it during my shower. I have jumped back from it many times. Doing this could set you up for really severe burns on the eyelids if there is a malfunction in water pressure or something.

Billye