Coping problems: is anybody willing to talk to me about their coping experiences?

[Sander80]

Hi guys,

I’m Sander, 35 and I live in the Netherlands. I have dry eye since 3 years (MGD and aqueous deficient). It started out pretty severe, then with IPL treatments and doxycycline it got better to a moderate level, but last year it became so much worse and I now need to wear moisture chambers and use drops frequently to have a little comfort. IPL’s don’t seem to work anymore and my optometrist said I had the worst lipiview readings she has ever seen. 43 left eye, 37 right eye. Meibography showed 90% athropy of my upper eyelid glands in my right eye and in my left eye my glands were just zigzagging all over the place instead of being vertical. I was devastated when I saw these images. Since one week I have punctual plugs fitted for the first time, but they don’t seem to help either.

If been reading this forum many times and it has been of great help so far! This disease is just horrible, and therefore it’s nice to know you’re not alone and there are others dealing with the same disease so you can share experiences.

With the regression of my eyes and quality of life I have developed a need for psychological support in order to not end up in a depression. I’m talking to psychologist and he recommended me to talk to people who suffer from dry eye as well. Preferably people who are as severe as me or more severe and talk about the disease and coping mechanisms. To be honest, sometimes I feel so powerless and it hurts so much that I just want to give up. I’m sure these feelings must be recognizable for many dry eye sufferers.

So I was wondering if somebody is willing to talk to me by phone or skype about their mental challenges facing this disease and how they are successfully coping with it?

I would greatly appreciate it and I think it would really help me! Hopefully I could be of help to somebody as well!

Stay strong!

Sander

[savino]

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[Sander80]

I really don't know. I got my first meibography 4 months ago. Wish I had one sooner, but eyedocs here in the netherlands were clueless and unable to properly diagnose me.
So i don't know when the athrophy started. But to be specific, i still have all my lower glands. Which i attribute to IPL. I think my rosacea destroyed my upper eyelid glands, I can see i lot of unusual spider veins near my top eyelid margin. IPL is mainly working on the lower lids. My left upper eyelid glands are also in bad shape with 25% athropy. So this theory makes sense.

[savino]

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[waterbee]

sanders, my ophthalmologist told me you only need 20-30% of your glands (on ether side your lids) to actually work fully to have a comfortable tbuts.
apparently this is because the quality of the oil is far more important thats in the remaining glands, then the amount you have working. focus on the ones you have and keep them super healthy with all the stuff your doing.
she also told me some are just born with less working glands or often glands just shut down for no reason, that even with people with no dry eye have this in a certain percentage of cases and they never notice as the remaining glands are doing there job.

[Sander80]

Savino and waterbee, thank you both for your replies!

savino s: yes, i wore contact lenses, but nof for the past 10 years. I had Lasek 10 years ago.
My inflammation is terrible. My lids are really red. I also have rosacea.
I know, both are bad when you have dry eye.

waterbee: No offence to you waterbee, but i find it interesting the stuff opthalmologists seem to know that does not seem to be researched. I can't find any research paper on the number of glands that are necessary for good TBUT's.

Logically, if 20/30% per eye would be enough then most people with MGD would not have a problem when their oil is transparant and they have underproduction like me.
I know my oil is good, it's clear. Most of the glands i have left are working. I've seen it many times on video's. At least, it's as good as it can gets. Its just not enough oil.
So this 20/30% is enough, i'm sorry. I just don't believe it, i'm the living proof that it is nonsense.

My TBUT is 2 seconds and I've done almost anything I can do to have everything working. My glands are open, maybe the problem is that the openings are smaller then they used too because of keratanisation and a normal blink can't get enough oil out. Maybe my production is just low because of excessive inflammation or some other unknown reason.

I will have a 6th IPL in 4 weeks and after that start a course of doxy for 3 months together with the new Ikervis (cyclosporin).
I hope this will get the inflammation down and get the glands to produce more oil.

I will of course report on this forum.

[savino]

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[Sander80]

The information about only needing 20-30% healthy glands is based on Donald Korb's study you can look it up. For instance I know that my right eye is pumping oil mostly from the lower temporal glands just by looking at the oil pattern. The left eye is pumping from the nasal glands. But I have oil in all of my glands which confirms Korb's conclusion. My guess is lasik messed up your glands. And yes inflammation prevents the oil from being pumped out consistently. They freeze up. I had TBUT 0s in both eyes just because of inflammation. Good luck.

Interesting information Savino! Could you maybe provide me with a link to this statement by mr. Korb? I'm pretty sure that my case was not caused my lasek primarily. Since i've had that done over 13 years ago and was symptom free for ten years after that. But it doesn't help either, i know. I think rosacea wrecked my upper glands with inflammation. My lower ones are still there because i've done IPL. I think I also had damage from contact lens were from before I did Lasek. I think maybe my contact lens liquid contained harmful preservatives which already caused damage.
I did Lasek when I couldn't tolerate contact lenses anymore. They laser clinic of course said i was a good client. By right eye was a bit dry according to them, but it shouldn't be a problem.
If i knew what i know today, I would have never worn contacts, nor would I have done Lasek.

What's your TBUT at the moment Savino? Has is gone up from 0? How did you do that?

[savino]

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