Uncommon, Debilitating Dry Eye Symptons

[Arlo]

I have some debilitating dry eye problems that is affecting my life very much.

My symptoms (common to many):
- sensitive to moving air, forcing blinking and squinting
- but no scratchiness (contrary to many people)

Symptons I've never hear of:
- I call it "Eye and Lid Exhaustion"
- during morning walk, start feeling "fullness" and fatigue in eyes, increased blinking/squinting
- eyes and surrounding muscles feel strained; lids feel heavy
- want to close eyes for relief
- hard to keep lids open (no sleepiness involved)
- At this point symptoms are DEBILITATING.
- Left eye is much more affected by ALL symptoms than right. (If I hold left eye shut, right eye is fine with no need to blink

Diagnosis and Treatment:

Winter 2018: punctal plug placed in left eye; worked very well for a few weeks and then not so well any more; I think it was part way out as I could see it slightly raised; fell out end of June 2018..

May 2018: Dr. #1 diagnosed meibomian gland inflammation; treatment: warm compresses, Avenova and Retaine (both of which he sells). Saw no improvement after 7 days of treatment.

June 2018: Dr. #2 (he was on-call doctor when #1 was away, so a second opinion). He saw no meibomian gland dysfunction; said no reason for Avenova; simple tear test (strips) shows adequate tears after 2 minutes. He said it's not allergies. Suggested replacing Retaine with another single-use. I chose Systane which gives comfort and relief, but very short term (~20 minutes). A few minutes of warm compresses which I do leaning over sink. Suggested TheraTears supplements which I am still taking. I thought I had relief after a few days of Theratears, but then that ended, so not sure it's helping. Stop using any bottled drops, use single-use only.

I have bad days, good days and medium days.

Age: 69
Meds: Hormone replacement therapy; levothyroxine .075mg
History: high myopia; cataract surgery and implants, both eyes, 2009; scleral buckle, left eye only, 2010 - preventive.
Over the years, tried Restasis twice, minimum 6 months each time. Did not work.

In addition to any input anyone has, I have two specific questions:
- If a punctal plug appears raised (stayed that way several months), does that mean it's not plugging tears? In other words, is this why full effect of plug stopped after a few weeks?
- Does the simple tear test (strips left in lower lid for 5 minutes) say anything about the composition of the tears? If not, what can one conclude after "adequate" tears after 2 minutes?

[Guest]

There's A LOT to unpack here....the thyroid medication stands out. People with thyroid problems sometimes have floppy eyelid syndrome. So this may mean you're sleeping with your eyes open. I would guess you're a side sleeper too correct?

The doctor that prescribed the compress, reatine and avenova...did he express your glands? His suggestions were good...you need to do them for two months and correctly to see any effect. Forget the retaine, just choose a drip you like, I like theratears preservative free and autologous serum...but the compress and avenova are a must have.

No, you cannot tell tear quality with the paper strips just quantity. Sounds like you have adequate tears but your oils are bad. Doing the compress the right way and washing your lids is where you must start. The compress has to be hot enough to melt the oil but not so hot you cause more inflammation. It's hard to get good at the compress but it's the main part of your treatment...it must be done right twice a day maybe more frequently in the beginning. When I did the compress right...I had glue coming out of my lids. Literally glued my eyelashes shut.

Good luck, just offering what little help I can.

[farmgirl]

I'm no expert but it has been my experience that if a plug doesn't seat there are two reasons there's a blockage that keeps it from going down further or the plug is too big for the size of your punctum.

Schirmer tests are very basic and apparently not really diagnostic you need more than that. Tear osmolarity is a much better test.
http://deiamerica.com/

Lipiview is also an excellent diagnostic tool and should include photos of your meibomium glands. Google clinics that do lipiflow near you they will be able to do lipiview.

Do you wear moisture chamber glasses? Are all of your tear ducts plugged or just two?

You need to find a better doc that has more experience with dry eye.

[Arlo]

Yes, a lot to unpack here and I'm grateful to anyone who chooses to read my post, and moreso to those who reply! It was therapeutic for me to write it.

Dowork123: Thanks. Yes, I am a total side sleeper. Not sure how you knew... But nothing looks abnormal with my eyelids, nothing floppy, in fact most close to me never are aware of the eye exhaustion when it's at its peak unless I'm sitting there with my eyes closed (which is not all the time).

No, Dr. #1 did not express the glands. But what I'm confused about is that Dr. #2 said there was no sign of the meibomium glands being full or inflamed (not sure what the term is). So I thought I was misdiagnosed. That's why I stopped the Avenova, although I do do 5 minutes of warm compresses twice a day because it feels good. I have never seen anything like a gluey substance being released as you describe so I must be doing something wrong. If I follow the instructions of Avenova, I don't see how it gets in their to empty the glands.

Farmgirl: Thanks, I will check out Lipiview. I am starting to think I do need to change doctors. I don not wear moisture chamber glasses and have never heard of them (I'll look them up). In March I had punctal plus put in R and L eye. The next day I had to return because the R one was sticking out and hurting the cornea. He removed it and said he couldn't replace it because it was inflamed.The L one stayed in until a week or so ago (so around 4 months), but I often felt it against the upper lid, so I think it was not all the way in. And the euphoria I felt after

[Guest]

Yes, a lot to unpack here and I'm grateful to anyone who chooses to read my post, and moreso to those who reply! It was therapeutic for me to write it.

Dowork123: Thanks. Yes, I am a total side sleeper. Not sure how you knew... But nothing looks abnormal with my eyelids, nothing floppy, in fact most close to me never are aware of the eye exhaustion when it's at its peak unless I'm sitting there with my eyes closed (which is not all the time).

No, Dr. #1 did not express the glands. But what I'm confused about is that Dr. #2 said there was no sign of the meibomium glands being full or inflamed (not sure what the term is). So I thought I was misdiagnosed. That's why I stopped the Avenova, although I do do 5 minutes of warm compresses twice a day because it feels good. I have never seen anything like a gluey substance being released as you describe so I must be doing something wrong. If I follow the instructions of Avenova, I don't see how it gets in their to empty the glands.

Farmgirl: Thanks, I will check out Lipiview. I am starting to think I do need to change doctors. I don not wear moisture chamber glasses and have never heard of them (I'll look them up). In March I had punctal plus put in R and L eye. The next day I had to return because the R one was sticking out and hurting the cornea. He removed it and said he couldn't replace it because it was inflamed.The L one stayed in until a week or so ago (so around 4 months), but I often felt it against the upper lid, so I think it was not all the way in. And the euphoria I felt after

I guessed you were a side sleeper because they're twice as likely to develop dry eye. When you sleep on your side, you mash your face into the pillow. Usually the side you sleep on is also the side with the worse eye. The way you described things, makes me feel like you're sleeping with your eyes open.

The thing is, with both doctors, if they didn't express your glands, they really don't know what's going on with your lids. The first good doctor I saw, diagnosed me with MGD but didn't explain his findings. My recent doctor explained everything perfectly, he said, you have foamy meibum, there's bubbles that form when I press...this tells me the ph is off in your glands and you have a bacterial infection. Without that information, it's hard to know how to proceed.

You most likely have mgd bevause most people have it...and if you have symptoms, I'd say it's a pretty sure bet. So yes, keep with the compress...I suggest you buy a bruder mask online and put it in the microwave. I temp mine to make sure it doesn't burn me and it's not too cold because either one makes the compress ineffective. This is hard...it doesn't seem so, but mastering how to use a compress is key to treating your glands. Then after I heat them I express them, get the crud out. Then I wash with avenova to kill all the bacteria I just unleashed into my eye and onto my lids. Then I wash my eyes out with theratears preservative free. Done...but all of that is key. You're literally melting bacteria and parasites out of your lids onto your eye...you want to clean all that out afterward.

Oh, when I say floppy eyelid, it's just a term for a rubbery more elastic eyelid. If you looked at me when I sleep you would never know I slept with my eyes open...because it's just this tiny opening...just enough to let air onto the caruncle. So I'll feel like I have an eyelash in my eye the next day and it's my swollen caruncle. If I sleep with it open wider...then I'll get an erosion. So you may think you're blinking completely (gonna also go out on a limb and say you're an incomplete blinker during the day too) but my guess is you're not.

[Arlo]

Am I correct that a diagnosis of MGD cannot be made without the glands being expressed? It seems that's what you're saying. So the osmolarity test is not enough. I recall at one point reading that after compresses I should massage the lids, which I think is what you do, but my problem was that I was reluctant to massage too much because I was afraid the plug (already raised) would come out. Any instructions given to me by my first doctor were really incomplete compared to what you learned from your doctor. Is there a way on this forum to learn about good doctors?

My doctor sold me a mask kit called TranquilEyes which really does not work for me for many reasons, mainly because it's not a microwave product but rather these beads that get hot when you crush them, but after using you have to boil the gel packs on the stove. Too much of a production for me. I stopped using it and really regret paying $45 for them without researching it first. I will look into the Bruder mask.

Thanks again for your input. I really appreciate it.

[Arlo]

Farmgirl: I see my reply got cut off. Here's the whole thing:

Thanks. Dr. #1 did a tear osmolarity test; Dr. #2 did not. I will check out Lipiview. I am starting to think I do need to change doctors so I'll do some research on who does Lipiview. I don not wear moisture chamber glasses and have never heard of them (I'll look them up).

In March I had punctal plugs put in R and L eye. The next day I had to return because the R one was sticking out and hurting the cornea. He removed it and said he couldn't replace it because it was inflamed.The L one stayed in until a week or so ago (so around 4 months), but I often felt it against the upper lid, so I think it was not all the way in. And the euphoria I felt during the first week changed, which makes me think it was there but it wasn't working. I soon realized I didn't really need a plug in the R eye anyway - it's only the L that's a real problem. I just reread what you wrote and it sounds like plugs can be put in more than one duct per eye. I had just one, in the duct next to the nose, lower lid.

[Guest]

Am I correct that a diagnosis of MGD cannot be made without the glands being expressed? It seems that's what you're saying. So the osmolarity test is not enough. I recall at one point reading that after compresses I should massage the lids, which I think is what you do, but my problem was that I was reluctant to massage too much because I was afraid the plug (already raised) would come out. Any instructions given to me by my first doctor were really incomplete compared to what you learned from your doctor. Is there a way on this forum to learn about good doctors?

My doctor sold me a mask kit called TranquilEyes which really does not work for me for many reasons, mainly because it's not a microwave product but rather these beads that get hot when you crush them, but after using you have to boil the gel packs on the stove. Too much of a production for me. I stopped using it and really regret paying $45 for them without researching it first. I will look into the Bruder mask.

Thanks again for your input. I really appreciate it.

I think a good doctor would look at you in the slit lamp, express your glands, flipyour eyelid (if possible) at a minimum. That's enough to tell you if you have a lid disease. Now what's causing it could take further analysis.

The osmolarity test tells you how salty your tears are. Most doctors I've spoken with find it irrelevant. One tech administered it wrong so it didn't matter lol...it's a very small and pretty insignificant piece of the puzzle. But possibly a quick way to determine dry eye...maybe.

[MGD1701]

Hi Alro

just do step by step, you will get better, like me.

You need all necessary objective data to identify causes & to stop progression.

Inflammation: must get it under control as soon as possible.
Perhaps this #30 could give you a better picture how to cope it effectively/economically too,
If you have missed it earlier.

http://forum.dryeyezone.com/forum/dr...k-milner/page2

[quattroboy]

I guessed you were a side sleeper because they're twice as likely to develop dry eye. When you sleep on your side, you mash your face into the pillow. Usually the side you sleep on is also the side with the worse eye. The way you described things, makes me feel like you're sleeping with your eyes open.

Wow I didn't know this. I sleep on my left and guess what my left eye is the worse, well in terms of clinical signs, for example, staining.

Daft question but why does the side you sleep matter?

[Guest]

Wow I didn't know this. I sleep on my left and guess what my left eye is the worse, well in terms of clinical signs, for example, staining.

Daft question but why does the side you sleep matter?

The side you sleep on, that eye gets pushed into the pillow. When that happens, the eye gets forced open. Now imagine keeping your eye open, even slightly for a few hours...painful is a mild word.

So its not that the side you sleep on matters, it's that whatever side you sleep on will have that eye forces open. So that eyes gonna hurt much more. We should be sleeping on our back...it's so hard, trust me, I'm working on it.

[quattroboy]

The side you sleep on, that eye gets pushed into the pillow. When that happens, the eye gets forced open. Now imagine keeping your eye open, even slightly for a few hours...painful is a mild word.

So its not that the side you sleep on matters, it's that whatever side you sleep on will have that eye forces open. So that eyes gonna hurt much more. We should be sleeping on our back...it's so hard, trust me, I'm working on it.

Thank you Dowork123 I have learnt something. Just started wearing Eyeseals 4.0 at night. Didn't really think I slept with my eyes open but decided to give them a go. Looks like I've made a good decision. I'll also try and sleep on my back. Snoring be damned1

Luckily I find the Eyeseals comfortable and my wife doesn't seem to care sleeping next to a man in googles!

I'm also a partial blinker.

[Arlo]

Hi Alro

just do step by step, you will get better, like me.

You need all necessary objective data to identify causes & to stop progression.

Inflammation: must get it under control as soon as possible.
Perhaps this #30 could give you a better picture how to cope it effectively/economically too,
If you have missed it earlier.

http://forum.dryeyezone.com/forum/dr...k-milner/page2

Thanks for that link to the other thread. All that info is a bit overwhelming! I think my goal now should be to find a doctor with some expertise in this who can diagnose my symptoms and relate them to Hashimoto's (an autoimmune disease, which is why I am treated for hypothyroid). If anyone has any recommendations for a doctor in the Santa Cruz area or the South Bay area, I'd appreciate it.

As for my side sleeping, I know I alternate sides, but my symptoms are much worse in the L eye.

[Guest]

Thank you Dowork123 I have learnt something. Just started wearing Eyeseals 4.0 at night. Didn't really think I slept with my eyes open but decided to give them a go. Looks like I've made a good decision. I'll also try and sleep on my back. Snoring be damned1

Luckily I find the Eyeseals comfortable and my wife doesn't seem to care sleeping next to a man in googles!

I'm also a partial blinker.

I will give you one warning on the eye seals..they made things worse for me. Because they stick to your face so well, they actually pulled my lids up and open because I was pushing against the bottom of the bed. This made the back of the mask slip down and the front pull my lids back. Had a horrible erosion. I'm not saying it's a bad product, may work well for you...but if you keep having issues with the goggles, they may not be helping. I really wish I could use them..it's better than applying drops every few hours at night. However, I can't use gets or ointments so I just pop in a good thick tear, take a piss and then back to sleep lol.

[Guest]

Thanks for that link to the other thread. All that info is a bit overwhelming! I think my goal now should be to find a doctor with some expertise in this who can diagnose my symptoms and relate them to Hashimoto's (an autoimmune disease, which is why I am treated for hypothyroid). If anyone has any recommendations for a doctor in the Santa Cruz area or the South Bay area, I'd appreciate it.

As for my side sleeping, I know I alternate sides, but my symptoms are much worse in the L eye.

As far as doctors, I'm going to UIC eye clinic because they have every tool to test for dry eye. I really want to know exactly what's going on. I would suggest a research college nearby. Or google dry eye specialists...choose one that does all the testing in house.