Bev, I also have it, and have read many reports (on this forum...might want to use the search at the top of the page), but as Missy said, the wet wash cloth used to wipe eyes is all I've ever known to do. It does work, temporarily. Oh, see the list of threads at the bottom of this page. You can check them.
Yup.. cool compresses were the only thing that seemed to help Glen. This was one of those "fun" (NOT) symptoms that was really complicated by the FTD.. instead of saying to us "my eyes are burning" he would just scrunch his eyes shut really tight... and walk around that way if one of us didn't notice. Kinda scary!
Does it get better in lower light? I have photophobia as a side effect of optic atrophy, and sunglasses help lower the pain light causes me. Photophobia isn't a fear of light, but a progressive discomfort or pain in it, and can be caused by any number of eye problems from nerve problems to dry eyes. In my case, I can't see through glare, so the pain reduction was a happy side effect. Still, it is cheap and worth trying!
I've read that certain organic acids have been found to build up in the skin of PALS. It is thought to be the result of waste products generated due to nerve death. I wonder if these acids are what stings our eyes. I've found that rubbing my eyes with my fingers often brings on the stinging or makes it worse. I try to use a handkerchief to wipe my eyes so I don't touch them with my hands.
You guys are great. I was laying here wondering what was up with my vision. Blurry and dry. So I came here, found threads that dealt with eye issues and so now I'm cool... nothing to worry about, comes with the territory and there are ways to deal with it. Question answered.
I was just asking my husband if there is waste product from the dying muscles....what happens to it?
dry eyes are very common for PALS because as the disease progresses, they tend to blink less and less. My PALS sometimes has difficulty closing his eyes all the way, and sometimes they wont stay closed! Also, with the less blinking, if the PALS is sitting very close to a computer screen or even a tv, it can cause dry patches on the eyeballs, which i believe is permanant.
So for all you PALS out there, when youre at your computers, remember to blink often and take breaks. Artificial tears work well, as Iris said. Lots of times Ray with sit with a wet rag strapped over his eyes for a couple of hours. We also tape his eyes shut at night because they tend to pop open when he is trying to sleep.
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