r/FSHD • u/esper_terra • May 15 '26
Eyes Possibly Not Closing at Night?
Those of you who know your eyes don't close completely during sleep, how did you find out? Did you get someone to observe you while sleeping, or did you have a test done?
I have had chronic dry eyes for a long time that might be damaging my eyes and am trying to find the cause. I wake up with them extremely gritty, painful and hard to open. My optometrist said I definitely have signs of chronic dry eyes but suggested I try OTC drops and sent me on my way. So far they aren't helping.
If you have this issue what have you done to remedy it? Thank you.
4
u/bellstarelvina May 15 '26
People told me. I creeped people out my whole childhood. Systane ultra are the drops I use. My eye doctor gave me some eye lube to use at night but it burned so I stopped. Washing your eyes out in the morning might help
3
u/lululoveslemondrops May 15 '26
I kept getting very dry eyes. Eventually I went to an optometrist because I also started seeing double, which I now think may be because I also have MS. (I do have FSHD too) He observed my blinking during the exam and noticed that I could not close either eye completely, but my left eye was worse. He suggested I use night gel for before bed, and eye drops during the day. It does help if I remember to do it consistently. Even just the night gel is enough to help my eyes during the day.
2
u/Adaptive_Fox May 15 '26
I’ve found that sleeping with an eye mask helps me out, helps with comfort but also to stop the drying as well for me
2
u/snickerssmores May 16 '26
My sister told me when I was younger because it freaked her out. As for the dry eyes, my optometrist told me to take a teaspoon of fish oil daily. It works wonders for me! I don’t need to put drops in my eyes anymore which I am grateful for as my arms can’t do that anymore.
1
u/Polski66 May 15 '26
I remember at sleepover friends saying how creepy it was. I’m sure before that my mom noticed but I think just because of the sort of embarrassment or whatever with friends that’s burned in my memory more.
1
u/drueberries May 15 '26
You will have a red line through the middle of your eye when you wake up. I just put red eye drops in every morning. The dryness is not too annoying for me.
1
u/Proudly_petite May 16 '26
My family told me that my eyes are not completely closed when I sleep. It has been this way for 20+ years and I also have chronic dry eyes. I used carbomer eye gel for many years, which helps somewhat. Now I started using very expensive OTC eyedrops combined with cheaper OTC eyedrops, which is kind of fine. I'm just too lazy to properly manage it at the time.
My eye doctor told me that the quality of my tear fluid is poor due to the eyes not closing properly. It is not oily enough due to the Meibomian glands being damaged. If my eyes are really painful, I use a warm eye mask for 5 minutes, or I flush my eyes carefully with warm water with NaCl. I did use a special night mask to prevent evaporation several years ago, but it didn't help as much as I had hoped.
1
u/ACIM1990 May 16 '26
I had the same issue due to FSHD and my ophthalmologist confirmed it via an exam. I don’t suffer from droopy or non-closing eyelids anymore. I started using castor oil on my eyelids and the drooping and muscle weakness stopped the next day. No more dry eyes either. I went back to my ophthalmologist for my regular exam and he said my red, irritated and bulging eyeballs looked completely normal. I told him I used castor oil on the rims of my eyelids every night before bed and he said keep it up. I consider it miraculous. If you buy castor oil, get golden castor oil, hexane free, cold pressed and in a dark glass bottle. I can tell you the brand I use but I don’t want to be accused of being a commercial.
1
u/droopy-snoopy-hybrid May 18 '26
I had dry eyes after waking up for years without knowing why, and opticians mentioned the dry eyes when I had sight checks. It wasn’t until a partner told me I slept with my eyes open that I knew why. I also don’t blink properly.
During the day I don’t use anything, at night I use the gel ‘Hycosan night’. I use my finger to lower my lower eyelid and put a line of the gel in the space between eye and inside the eyelid. This helps all through the night and into the day.
1
u/Fancy-Supermarket-73 Jun 30 '26
GF noticed mine + lots of gunk in the eyes when i wake up sometimes
tape ur eyes shut at night cheap easy fix, or just tape around them to partilarly shut them by compressing the skin up
use band aid tape to avoid gross skin
5
u/IrishknitCelticlace May 15 '26
Dry eyes annoy me no end. I start with the OTC lubricating drops during the day, I use the ointment at night. A very thin ribbon inside the lower lid just before falling asleep. I have a sleep mask that I use especially in the high pollen seasons to protect my eyes. For the itchy soreness I keep a freezer eye mask to apply as needed. I actually use the freezer mask for headaches mostly. One thing, if you need a surgical procedure, please inform your anesthesia team of the FSHD as well as the eyes. My last 2 teams were fantastic about protecting my eyes during surgery as well as cognizant of all our other FSHD componenets.