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menthol sensation (more debilitating than pain)

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  • Rebecca Petris
    replied
    Originally posted by Rojzen
    I have read only Dr. Latkany's book, but I sense that all the new publications on dry eye prescribe regimens designed to reactivate/normalize the meibomians. . .Any program involving lid scrubs and warm packs is targeted mostly at getting meibum to flow more freely...
    To tell the truth this is a point in which I was disappointed in "Reversing Dry Eye" which does not do much at all to bring attention to the MGs. I think this is because the treatment plan is based largely on the famous Delphi panel's 4-level pat "flowchart" type dry eye approach which I frankly find mystifying - for something from such an elite crew I was amazed it does not really make any distinction between aqueous and meibomian deficiency. I was also kind of turned off by the way the panel's approach lumps treatments, like putting moisture chambers in the end-stage class with surgery (!!!).

    That said, I believe that all of the regimes advocated, along these lines, completely disregard that some of us have endstage meibomian disease, with gland dropout. . .It can, I fear, be a disservice for practitioners to harangue their endstage patients about proper "lid hygiene" long after this approach will have ceased to be useful.
    Quite. The fundamental problem IMHO is prescribing treatments without getting hands-on with the glands to find out whether & how well they're working. I know I harp on this a lot but once again this is one of the biggest problems out there - lack of knowledge/training in doing a decent lid margin exam. (Those who were at our mini-conference last year may remember Sandra Brown's tutorial on what should be done during a lid margin exam....) Among all the dry eye folks I talk to during the day I find it frustrating/amusing how typically they were never told a thing about MGs and don't seem to have ever had them examined... but have been prescribed treatment as though they have MGD. Flip side of that coin. They probably do (have MGD), of course, speaking statistically, but they only get the treatment by good luck since their doc is basically just going through a mindless checklist of "stuff to do" rather than prescribing for a diagnosed condition.

    I think that probably quite a small percentage here have a large number of completely atrophied MGs and in those cases moisture chambers are absolutely vital as far as I can tell.

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  • Rojzen
    replied
    reviving meibmomians

    I have read only Dr. Latkany's book, but I sense that all the new publications on dry eye prescribe regimens designed to reactivate/normalize the meibomians. . .Any program involving lid scrubs and warm packs is targeted mostly at getting meibum to flow more freely...

    That said, I believe that all of the regimes advocated, along these lines, completely disregard that some of us have endstage meibomian disease, with gland dropout. . .It can, I fear, be a disservice for practitioners to harangue their endstage patients about proper "lid hygiene" long after this approach will have ceased to be useful. . .I did compresses, dry heat, and lid scrubs, and even a retinoic acid chemical peel on my lid margins for 2 years, with absolutely no response. . .I got better when I simply stopped. . .

    And so while MANY of us can bring our meibomians back to better function, for those of us cannot do so via lid hygiene, we need to look elsewhere. . .I believe the androgens will be a breakthrough, in these cases, though I suspect they will have to be coupled with a peel, of sorts, that opens any gland orifices that are sealed by metaplasia. . .

    Bottom lin, however: It is ENTIRELY possible to function well even if the meibomians don't come back. . .I have been doing so for 8 years, now, thanks to moisture chamber glasses and a series of topical meds. . .This approach eliminates my menthol sensation for about 75% of the time, which is, for me, the gift of life.

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  • nick
    replied
    I'm definitely with you on the menthol feeling -- I seem to alternate back and forth between the sandy-gritty feeling when my eye-lids are inflamed and the "menthol evaporation" sensation you're describing when they're not. Nasty, nasty sensation.

    And what's this book you're talking about? God knows I'd love my MGD to go away...

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  • Judy
    replied
    Hello Rojzen,

    The book about bringing meibomians back to life--do you know who the author is? Is it Dr. Latkany?

    Thanks!

    Judy

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  • Rojzen
    replied
    your images are perfect (menthol sensation)

    Neil and Dianat! You've perfectly captured the menthol sensation. . .In fact, I used to tell people that what I feel is similar to the sensation of sticking out my tongue, and letting it dry in open air. . just like Dianat's description of the wet finger in the wind. . and YES!! Alcohol would produce this, just as an oil coating would warm the surface, block evaporation, and end the sensation. . .Thank you, friends, for identifying!!! And yes, Neil. . .This means, at least for me, VERY fast evaporation. . .My evap. time (TBUT) is still 0 seconds. . .Just last week, my eye doc said the evap. was instantaneous. . .I have gotten as high as 5 seconds, from time to time. . .but mostly, I essentially have no tear film at all. . .Seems miraculous that I get so much relief from the moisture chambers. . .I'm eagerly awaiting that book that is coming out in March, about bringing meibomians back to life. . .I'm not optimistic, for me, but it's good that some doc is thinking seriously about this. . .and as Rebecca says, for MGD, our mission is more so reactivation than it is lipid replacement. . .Thanks, guys. . .

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  • neil0502
    replied
    I second what Diana said.

    If you pour isopropyl alcohol over the back of your hand, it evaporates very, very quickly. What you feel is a "severe" cooling sensation that surely could be described as a "menthol moment."

    That sure sounds like severe evaporative dry eye (very short tear breakup time) to me ... and mine's usually less than two seconds.

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  • dianat
    replied
    I might describe my eye discomfort as a menthol sensation. It's sort of like licking your finger and holding it to the wind. You feel the cool feeling of air. If I dipped my finger in oil, I wouldn't feel the air at all. This is why I wear goggles outside and in my car. I used to wear them indoors as well until I got my comfort a bit more in control.

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  • Rojzen
    replied
    thank you for menthol echo

    Thank you, Julie, for echoing the experience of menthol sensation. . I am thrilled that plugs have stopped that, for you. . .I've had plugs for nearly 8 years, but the menthol sensation remains my primary debility. . .probably because my tears are essentially devoid of lipid, and the more that flow down, the faster they seem to evaporate. . .

    Anyone else dealing with menthol sensation?

    I am in a quest for DHEA drops now, because I sense that they alone can directly affect (positively) meibomian function in endstage cases that fail to improve with lid hygiene and long courses of doxycycline (I gave doxy about 6 years before giving up. . . )
    Last edited by Rojzen; 09-Feb-2007, 15:53. Reason: typos

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  • Julie1
    replied
    I've had this sensation! It is awful and extremely debilitating. I could not keep my eyes open no matter how hard I tried. I remember laying in my bed with my eyes shut, wondering how I was going to get through the next minute, hour, day. I didn't think anyone else had this. Plugs were the only thing that resolved it. I really don't get this type of pain anymore -- now it's more of a tight, irritated, burning type of pain.

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  • calli66
    replied
    From your description, I don't think I experience this type of pain. Your mention of it was the first I had heard of it.

    The kind I have is the "foreign body" sensation--and usually my eyes get really red with it--and little pieces of solid mucous form in my eyes, too. Maddening. Gel, closing my eyes, and Time--usually overnight--and it goes away. I used to think the solid globs were the result of a bacterial infection, but it isn't that.

    C66

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  • Rojzen
    started a topic menthol sensation (more debilitating than pain)

    menthol sensation (more debilitating than pain)

    Wondering if anyone has the sensation that has most adversely affected me. . .It is what I've heard some foreign doctors call "menthol sensation," like a cold, mint wind is blowing right in to your eyes, even if you're just standing still, indoors, in a perfectly calm-aired room.

    I also have burning pain, which has been well-controlled by Restasis. . .

    I control the menthol sensation with my moisture chamber glasses. . .For a long while, I had a hard time convincing my docs that the menthol sensation was debilitating me. . .and so I started to call it "pain." It is actually, for me, much worse than pain. . .It makes me need to close my eyes. . .which means turning the whole world off, since I am not blind. . I so wish this phenomenon were better documented. . .

    Perhaps I should call it air-sensitivity. . .does that sound right?
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