Looks like i have lagophthalmos

[UGH_my_eyes]

The last optometrist i saw asked me to have my wife observe me during sleep to see if my eyes were fully closed. At first I kind of disregarded this as a hogwash old wives' tale(i wondered how that could be possible? sleeping with eyes open?), but later asked her to do it just because I'm running out of possiblities. I already switched bp meds, changed my habits(caffeine intake, etc) and it didn't seem to be getting any better. So she did and said that yes, it does look like they are partially open when I sleep. I tried a experiment last night...I taped one eye shut with medical paper tape. And when I woke up and removed the tape, the non-taped eye was full of crust and mucus and the usual abundance of junk I have been experiencing for the past 3 months. and the taped eye not only was free of crust and mucus, but it actually felt somewhat hydrated! I'm not into self diagnoses because I'm not qualified, but it looks like I may have finally pinpointed my problem. The next step is learning how to treat it and bringing it to the attention of the O.D.

I have been reading plenty on this site about nocturnal lagophthalmos, but if anybody wants to chime in with any helpful information, I would really appreciate it. I don't know how long I have had this problem, but I know this summer was brutal and my eyes took a beating. Just think a full summer of fans blowing in your face 24-7 with your lids open to exposure even at night time. In July I started waking up with very blurry vision and crusty eyes. In the subsequent months the other visiual disturbances started.

So far this is my plan of attack until I see my OD again:

- Realizing I may not have a full blink as a result of lagophthalmos, forcing myself to blink all the way several times per hour.

-Systane restorative formula eye drops throughout the day. (only drops that seem to provide any relief at all)

- At bedtime, taping both eyes shut each night, then placing my sleep mask over it to prevent the tape from coming off.

I tried some gel at night and it was awful...so for now I plan on just going with the systane or the blink drops the OD gave me right before I tape my eyes.

[spmcc]

Isn't it startling to find out you sleep with your eyes open or partially open?!?! I was shocked to find out that I do too!

I was also shocked to find out that sometimes I only partially blink (you can read my post about it here: partial blinking ).

It was recommended to me that I do blinking exercises.

Also, as you've discovered, coverering the eyes at night is important. I use micropore tape or Glad Press N Seal.

It's also very important to find the drop/gel/ointment to go under your eye cover. One of the favorites is Muro 128 ointment (altho it's not Rx, you must ask for it behind the pharmacy counter).

Just a little warning... some people find that anything that presses on the lids (like a 'regular' eye mask) can make the eyes dry in the morning. That's why something that vaults the lids, such as Tranquileyes or Onyix, works so well for some.

Another thing that I do is wear moisture chambers during the day. I say that air is my enemy. That doesn't mean just warmed air, cool/cold air, blowing air, etc. I mean ALL air! It was hard to bite the bullet and wear them 24/7, but wearing moisture chambers helps A LOT.

Good luck with everything.
Sheila

[UGH_my_eyes]

No doubt Sheila. I did not think it was medically possible for a person to sleep with eyes open.

Do you use Tranquileyes at night? Is that the same as moisture chambers you spoke of? I read the reviews on them and they aren't that great. Seems like it helps only about half the people using them. Too mnay people were complaining it was 50 bucks down the drain.... Then again, I wonder how many actually have lid closure issues and how many are just dry eye sufferers looking for some relief. Can you get the glad press n seal at the grocery store? I have some medical tape, something like the other name you mentioned, and it seems too sticky in the morning. It says gentle on the package but it realy isnt.

Your post is very helpful. Thanks alot.

[canndym]

Hi I have slept with my eyes partially open since I was a little girl and been told for years I was a partial blinker. It has never really bothered me over the years until I was in university so I started using drops a couple times a day. After I lost my tear production I think this has been a factor that makes it soooo much worse.
I find my eye lids sticking to my eyes wakes up me throughout the night all the time. Like my eyes are trying to move, get stuck then cause alot of pain and wake me. I use ointments but this has not helped. I also tryied taping them which actually made them flare up worse for several days. I tried a loose fitting sleep mask and it was okay I think it helped better than wearing nothing.
I just got the trainquileyes and I am still getting used to wearing them while I sleep but I used them to do a warm compress and really liked that. I love the supper soft foam and I have found it to really helped my eyes in the morning. They are still stuck shut in the morning even with ointment and trainquileyes. But the pain seems to be better this week and I have been able to stay up all day without requiring periods of sleep to rest my eyes. It said it takes up to 3 weeks for benefits so maybe it will get even better. I would personally recommend trying it if you can. They are not sexy at all and I thought the wet pads on my eyes would irritate me but they don't they actually are really soothing to my tired dry eyes by bedtime and I am looking forward to putting them on tonight.
I also purchased moisture retaining glasses which are different than the trainquileyes as they are for wearing during the day. They are very large and I look pretty silly in them so my family has refused to go in public with me wearing them. So I have been wearing them around the house in the evenings. They do help but I find they give me a headache so shorter periods of time are better and I cannot use them for computer work.
I hope you can find a treatment regimen that works for you.

[spmcc]

Do you use Tranquileyes at night? Is that the same as moisture chambers you spoke of?

Tranquileyes and Onyiz are for nighttime. Here are some eye covers for night.

Moisture chambers (e.g., WileyX, 7Eye, and less expensive brands) are for daytime. Here are some examples for daytime. You can also look for local dealers (e.g., Harley-Davidson shops) that sell these.

Personally, I own at least one of everything because, esp at the beginning, I didn't know what would help. Now I live in my WileyXs and 7Eyes during the day. They're only off if I'm switching to another pair!

Can you get the glad press n seal at the grocery store? I have some medical tape, something like the other name you mentioned, and it seems too sticky in the morning. It says gentle on the package but it realy isnt.

Yes, Glad Press N Seal is from the grocery store.

I have the same problem with tape and only use it when I'm travelling now (it's small and easy to pack). Because I have freakishly sensitive skin, when I use tape, I have to be very careful taking it off the next day. My skin rips! OUCH!

So, my personal preference is Glad at night. But it doesn't always make the best seal. So I also use my Tranquileyes or Onyix. The only issue I have with them is that, because I have rosacea and my face gets hot, I will take them off without knowing while I sleep.

It's all trial and error and finding the right combo that gives you the best outcome.

Good luck!

[UGH_my_eyes]

Thanks spmcc.

I have a nice sleep mask i got at walgreens. And that doesn't keep the lids closed but it does keep the light out. I could try the press n seal and put the sleep mask over it and see how that works for me. Like you all have been saying, it's a journey for each person.

[UGH_my_eyes]

canndym,

I know what you mean. The gel's and stuff are horrible and does nothing for me. And it's a real drag having to take naps just to rest my eyes. After 14 or 15 hours of being up I cant sit there and watch tv for very long without falling asleep. Especially in the dark. I had to turn down the brightness on my tv's and pc monitor. Light is too bothersome. I have, however, noticed a slight decrease in light sensitivity the last few days. So that's encouraging. The last time my eyes got all dried out a few years ago it took months of change in lifestyle before the eyes felt somewhat normal again.

Please keep me updated on your progress. If tranquileyes actually work then I'll be the next in line to get some.

[UGH_my_eyes]

Well wanted to give a update.

This combination of the sleep mask + glad press n seal + drops or ointments is not going to work for me. My eyes feel worse than ever.

I'm such a active sleeper that it's tough for any of this stuff to stay on my face. I'm not even that optimistic about the tranquileyes staying on my face. A few hours after I go to sleep, I wake up and the sleep mask and pieces of press n seal are laying between the sheets or on the floor.

I might be stuck(pun intended) with the tape every night. Really hope the OD has a good idea for me. My cornea must be all dried up cause I have bad glare and halos around lights. uggh..God only knows how long I have had this condition while my poor eyes have taken such a beating.

[spmcc]

Definitely go back to tape then. I think it's always important to "listen to your eyes".

Good luck and please keep us posted on what's working and what's not because it's really helpful to all of us here.

[UGH_my_eyes]

The OD told me yesterday to get some transpore tape as opposed to the paper tape I had been using. I did, and this tape is stable enough to hold the lids shut, yet gentle enough to come off easily without residue. So I'm pleased with that. No more scrubbing off sticky residue for 2 hours in the morning.

He did that flurocein test and my TBUT was not good at all....

He also told me to try soothe-xp..which i discovered has been recalled.

He said in order for these visual disturbances to go away(glare/halos, etc) the surface of the cornea needs to heal....and in order for that to happen the eyes need to remain in a constant state of moisture for at least a week. That seems like a impossibility because I have problems keeping them moist for even a hour sometimes.

He also said for someone like myself, a cold compress would be more beneficial than a warm one...why this is I do not know or understand. I should have asked.

I'm gonna try this for a few weeks as he suggessted, then move up to the tranquileyes if need be.

[canndym]

Hi sorry to hear things have not been improving yet. I think it must be very individual or depend on the docor as I saw mine this week and he said limit cold compresses to only when needed and keep doing warm compresses daily. I guess it is whatever works for each person.
I am the same as you.... I too find the trainquileyes come off during the night. Some nights are good and they stay on but many nights I find them usually under me by morning. I am still trying to figure out how to keep them on. I have tried wearing them tight to bed and it seems to help but it is hard to get them tight enough. They do seem to help even if I only get a partial night wear. If anyone has any tips on keeping them on at night please let me know. I will let you know how things go over the next week or so.
I really hope the glare/halos improve quickly but do not be too upset if they do not. Mine has not improved at all yeteven with doing regular drops. I went out this evening to our mall which I rarely go out after dark and had a rude awakening of how hard it is to see at night and how all the lights kill my eyes. Its too dark for sunglasses but the lights from the stores are too bright with my regular glasses. Now I remember why I never shop in the evenings.
Good luck with your new plan let us know how they work.

[UGH_my_eyes]

I feel blessed that there are other good people like yourself on here that I can talk to about this with. It seems so frickin foreign to the rest of the world, you know, the non DES folks.

I dont have the tranquileyes yet. The OD recommended trying the tape for a week or two, and if im not seeing any improvement ordering the tranquils. So far the tape has been effective at keeping the eyes closed and free of mucus and stuff, but my eyes are still too dry when i wake up and vision somewhat blurry(just not as bad). I noticed a lot of users here are using muro 128 (i think that's whta its called) So it must be good stuff. I'm gonna give that a try. I hate that my eyes are dead by 9pm and I have to go to bed. It's really ridiculous and life altering. Cant even watch tv in the dark that late anymore. the flashing light is killer...So i figure that If I can keep them properly hydrated for 8 hours of sleep, the incomplete blink thing might not be as damaging as it has been.

I asked the OD about the kind of feedback he got from tranquileyes, and he said the bottom line is that nobody likes to wear things on their face when they are trying to sleep. No matter if it's tape or tranquils or whatever...but they get used to it and it is beneficial.

How long do you use the cold compress for? I have made a few homemade ones with rice in zip lock bags.

Hi sorry to hear things have not been improving yet. I think it must be very individual or depend on the docor as I saw mine this week and he said limit cold compresses to only when needed and keep doing warm compresses daily. I guess it is whatever works for each person.
I am the same as you.... I too find the trainquileyes come off during the night. Some nights are good and they stay on but many nights I find them usually under me by morning. I am still trying to figure out how to keep them on. I have tried wearing them tight to bed and it seems to help but it is hard to get them tight enough. They do seem to help even if I only get a partial night wear. If anyone has any tips on keeping them on at night please let me know. I will let you know how things go over the next week or so.
I really hope the glare/halos improve quickly but do not be too upset if they do not. Mine has not improved at all yeteven with doing regular drops. I went out this evening to our mall which I rarely go out after dark and had a rude awakening of how hard it is to see at night and how all the lights kill my eyes. Its too dark for sunglasses but the lights from the stores are too bright with my regular glasses. Now I remember why I never shop in the evenings.
Good luck with your new plan let us know how they work.

[canndym]

You are definitely right no one seems to understand dry eyes and the problems it causes. I have been told several times that unless someone has experienced it they cannot fully understand. I think even if they have they still may not. This past summer my husband damaged 80% of his cornea in an accident. He had most of the symptoms of dry eyes having to put in drops every 30 mins and antibiotics for weeks light sensitivity fatigue, ect... I thought this would help him understand my condition more... That has not happened yet even with friendly reminders of how hard it was for him when his eyes were sore. When I have RCE my eyes get way more light sensitive so I usually get ready for work in the dark or to candle light/night lights. He would always turn the lights on and say it was just in my head. I did the same to him a couple times when he had light sensitivity he no longer does that! and he stopped saying anything about me wearing sunglasses in the house or at friends places. But he still cannot understand why its hard to go for walks especially in our weather or do regular life things when I have open erosions. I bought moisture retaining glasses but they are very big on my face and I look strange so he does not want me to wear them in public or if anyone comes over. So I have only been wearing them when I am home alone or just with my kids at home or in the yard.
I am trying to get motivated to wear them so I can start walking my dogs again. Its pretty much always dark now when I would go walking so I figure no one will see me anyways. I have gone a couple times for short walks and they seem to help so I just have to get over what anyone else thinks or says.
I have been using cold compresses maybe 2-3 times per week, sometimes less. I usually lay down with them to rest for 10-20 mins. They are usually not cold by the time I get up. I find laying down with compresses on usually puts me right to sleep someimes I set an alarm so I get back up.
I still do not understand how sore tired eyes can make your entire body tired.
I hope the tape works for you it would likely be easier since you do not have to wash them or oder parts. The tape just burned my skin and I found I could feel my eyes trying to move during the night and it woke me up even more then wih nothing. I seem to at least be able to sleep for most of the night now without waking up in pain so I am happy with that. Now just trying to keep them on will be the trick.

[UGH_my_eyes]

You are definitely right no one seems to understand dry eyes and the problems it causes. I have been told several times that unless someone has experienced it they cannot fully understand. I think even if they have they still may not. This past summer my husband damaged 80% of his cornea in an accident. He had most of the symptoms of dry eyes having to put in drops every 30 mins and antibiotics for weeks light sensitivity fatigue, ect... I thought this would help him understand my condition more... That has not happened yet even with friendly reminders of how hard it was for him when his eyes were sore. When I have RCE my eyes get way more light sensitive so I usually get ready for work in the dark or to candle light/night lights. He would always turn the lights on and say it was just in my head. I did the same to him a couple times when he had light sensitivity he no longer does that! and he stopped saying anything about me wearing sunglasses in the house or at friends places. But he still cannot understand why its hard to go for walks especially in our weather or do regular life things when I have open erosions. I bought moisture retaining glasses but they are very big on my face and I look strange so he does not want me to wear them in public or if anyone comes over. So I have only been wearing them when I am home alone or just with my kids at home or in the yard.
I am trying to get motivated to wear them so I can start walking my dogs again. Its pretty much always dark now when I would go walking so I figure no one will see me anyways. I have gone a couple times for short walks and they seem to help so I just have to get over what anyone else thinks or says.
I have been using cold compresses maybe 2-3 times per week, sometimes less. I usually lay down with them to rest for 10-20 mins. They are usually not cold by the time I get up. I find laying down with compresses on usually puts me right to sleep someimes I set an alarm so I get back up.
I still do not understand how sore tired eyes can make your entire body tired.
I hope the tape works for you it would likely be easier since you do not have to wash them or oder parts. The tape just burned my skin and I found I could feel my eyes trying to move during the night and it woke me up even more then wih nothing. I seem to at least be able to sleep for most of the night now without waking up in pain so I am happy with that. Now just trying to keep them on will be the trick.

For me the dry eyes dont make my body tired, but they make my eyes so tired that I cant tolerate staying awake any longer. And then what happens is I wake up several times throughout the night because my body wasn't really tired to begin with...

I'm glad your husband now understands. My wife does not understand and seems to think I'm making stuff up. Last night I put a cold compress on my face and accidentally drifted off to sleep. She got mad cause I left the light and tv on and it woke her up. Basically told me she is tired of my complaining about my eyes and implying im making excuses. I dont wish this hell on anybody, but I do wish she was given a bit of enlightenment here. Unless there is a dead body in front of them, some people lack compassion and are way too judgemental.

Just curious did your OD or opth pick up on the corneal erosions or were you subsequently sent to a corneal specialist who picked them up? I'm 99% sure that I have undiagnosed corneal issues because my symptoms seem to suggest it. But so far no dx. Last week I mentioned it to him and he did the flurocein test and said the corneas look good. Kind of hard to believe with all the glare, halos and light sensitivity that there are no obvious signs of corneal erosion or somethin of that nature. The OD is great, one of the best in town, but this is puzzling.

[shanku]

I just notice this thread...hope you all are still around and will notice my note.

I have lagophthalmos and using TE goggles for 2 yrs now...I had the same experience with it...the goggles either moved out of position thru the night or found it out of my face in the morning; but later got used to it; BTW, I sleep on my tummy and that make it even harder to keep it on thru out the night.

These days I use 2 pieces of large tape on top of the TE goggles which runs across my face (like X) to hold the goggles in position. Since the tape sits on the forehead and cheek - so do not have irritation from it, my eyelids also feel sore with the tape.

During daytime I recently started using Boston scleral lenses to overcome the incomplete blinking issue. Thanks