OSDI 78 -> 25 in about a year: what worked and what didn't

[romeodakins]

Were you able to get back to how your eyes normally were before symptoms? I got dry eyes 8 years ago but symptoms went away after 2 years. But they recently came back 4 months ago because of excessive computer use from work. I did a scan of my glands recently and it seemed like most of my glands on the left eye has truncated (unsure if my glands were always like this or if it just recently happened). I'm worried of having permanently damaged my glands in the past 4 months but my docs keep telling me it takes years for meibomian glands to atrophy. I'm hoping I can get back to the point I was at 4 months ago. Since you were able to reduce symptoms in a year, I was wondering if a year of symptoms were enough to cause permanent damage to your eyes?

[anteloper]

Were you able to get back to how your eyes normally were before symptoms?

Thanks for the reply!

To your first question-- no-- I am not back to where I was before I got dry eye, and I don't think I'll ever get there. I will probably have this for the rest of my life, and I've changed my mental outlook on life in order to accept that. My dry eye only gets worse if I don't treat it, and I still get IPL every 4-8 weeks to maintain my current level of symptoms. I'm okay with it now but I'm prepared mentally for things to get worse again one day.

Since you were able to reduce symptoms in a year, I was wondering if a year of symptoms were enough to cause permanent damage to your eyes?

It sounds like you're saying that if my symptoms went away completely that would be proof there was no permanent damage. (Is that correct?)

I disagree with this. The connection between symptoms and underlying damage is not that close. Dry eye can get worse symptomatically without increased damage, and damage can also happen without symptoms getting worse. The medical literature says that the cornea first responds to a thin tear film by becoming *less* sensitive. In other words, dry eye damage can start without symptoms, before someone realizes what's going on, and then suddenly the symptoms appear once they hit a threshold.

Using eye drops, lifestyle, climate (how humid is it where you live?) all impact symptoms but may not affect the underlying disease.

I think it is important to think about symptoms and the underlying disease separately. I would have terrible anxiety if I thought my disease was getting worse every time my symptoms flared up. However, it is important to stop and think about your symptoms rationally when you are in a good mood, because they may be giving useful info about how to manage your disease. (I find it helpful to set aside specific time(s) every week to journal about my dry eye, and I track my symptoms in a spreadsheet every day-- just a quick 1-10 score for each eye.) The goal is to treat the disease, not the symptoms-- this is why I never used eye drops more than 1-2x a month, though that is not realistic for people with more severe cases.

I got dry eyes 8 years ago but symptoms went away after 2 years. But they recently came back 4 months ago because of excessive computer use from work. I did a scan of my glands recently and it seemed like most of my glands on the left eye has truncated (unsure if my glands were always like this or if it just recently happened). I'm worried of having permanently damaged my glands in the past 4 months but my docs keep telling me it takes years for meibomian glands to atrophy. I'm hoping I can get back to the point I was at 4 months ago.

I understand this is difficult to hear, but it's definitely possible that in the 6 years between when your symptoms went away and came back, that some or all of the apparent gland atrophy happened then, even though you did not have noticeable symptoms. This was difficult for me too, because my dry eye suddenly got bad when it started. I have some gland loss which definitely happened before my symptoms started.

That said, we need to be more clear about what we mean by "permanent damage". Dry eye affects lots of things: the cornea surface, the meibomian glands, the lid margin microbiome, the skin of the eyelids, and our nervous systems, including sensory (pain) and muscle (blinking, blepharospasm) nerves in and around the eyes, and our mental health. All of these things contribute to symptoms, but it's really only the glands where damage is "permanent". There is no evidence that truncated glands can grow back (mine haven't), but good treatment/management (IPL, blinking exercises, diet, etc.) can help the glands you have left to work better.

When I first got diagnosed, I really wanted to get back to "healthy", like I thought I was before the diagnosis. Making comparisons to my past self made me depressed. I really understand how difficult it is, but my life got better after I accepted that this is just how things are now, and just tried to focus on managing the disease in the present moment. No one knows if your symptoms can get back to how they were 4 months ago, but most likely your symptoms can improve with good care.

[leno89]

I am after 4 IPL sessions, my doctor dont want do more IPL, I think he is wrong. I am a truck driver and studying IT, I don't know what to do anymore. How to live, how to enjoy what I do (work), where can I work with a dry eye.