Eyelids will not open

[Judith]

Lately I have experienced when waking up my eyelids will not open. I have to really struggle to open them. This is not a consistent pattern but random. My hands can no longer reach my face to manually open them.
Is this a symptom of ALS? I did not think eyelids were among the muscle groups that are affected. Have any of you experienced this?

 

[davbo49]

one of my eyelids been doing that. like you i can't use my hands to open it. with out jane i would be going around with one eye open.

it seems like there is a build up in it why im sleeping make it stick together. this has been going on for about 3 m's now on and off.

 

[Judith]

one of my eyelids been doing that. like you i can't use my hands to open it. with out jane i would be going around with one eye open.

it seems like there is a build up in it why im sleeping make it stick together. this has been going on for about 3 m's now on and off.

I don't have a build up of mucus. It is definitely a muscle problem.

 

[Nikki J]

I am sorry. No one in my family has had that yet. I think I have heard of it before in ALS but it is rare? It must be horrible sorry again

 

[Janie H]

I have that happen almost every day! I thought it may be from my inhalers steam getting into my eyes. I can still use my fingers to force them open. More on my left eye than right.

Janie

 

[Atsugi]

I'm really sorry to hear this. My reading tells me it rarely happens in ALS, but it can.

 

[davbo49]

well it's good i have a roll of tape ready. i will have jane tape them up if it comes to it.

 

[Atsugi]

You need to blink. The eyes get painful if they're not well lubricated.

We put eye drops in my Krissy's eyes when her eyes locked in.

 

[lgelb]

Either way, try Genteal moderate dryness drops, morning, night and whenever you want in between.
And for those with gunk, ask your CALS to try a hot washcloth resting on your eyes before doing any wiping of debris, to loosen it up.
To avoid drying the sensitive skin, we used no-alcohol moisturizing facial wipes (on the rest of the face, obviously not the eyes) and hot water exclusively. But especially if using a mask, you want to minimize the oil underneath. And then you want to use CPAP wipes on the mask to remove the oil that adheres to it -- likewise, with no alcohol that could damage the mask. Or with the cloth masks, just soap and water.

 

[davbo49]

we have been using the eye drops. but thinking about it's been harder for me to keep my eyelid open. this is in my left eye to. in the 60's there was the man that had something wrong with him. for years hes wife would have to tape hes eyes open. i was a kid then. now looking at myself and the way im starting to look. im thinking this man might had als.

 

[patrick123]

I have the opposite problem in keeping my eyes closed when sleeping.

 

[Janie H]

Patrick that sounds much worse.

Janie

 

[davbo49]

patrick the tape could work both ways. but iiwii i guess

 

[rosec]

Recently my DH said something similar. It wasn't that the eyelids would not open, but there are are times that I would assume he was dozing off when in fact he says his eyelids were tired so he would just close them.

 

[ECpara]

I have a friend whose husband is "locked in" on his vent. The very last thing that went for him was his eyelids. Same with another good friend whose husband died of ALS (not vented). His eyelids went last. I've never heard of the eyelids going mid-progression but it just goes to show how unpredictable this disease is. Eyelids are controlled by voluntary muscles so I guess they could be affected any time.