menthol sensation (more debilitating than pain)

[Rojzen]

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?

[calli66]

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

[Julie1]

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.

[Rojzen]

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. . . )

[dianat]

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.

[neil0502]

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.

[Rojzen]

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. . .

[Judy]

Hello Rojzen,

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

Thanks!

Judy

[nick]

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...

[Rojzen]

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.

[Rebecca Petris]

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.

[odydnas]

Yes Yes Yes! I have been feeling this for years...currently being worse than before. When I was reading the forum, I didn't understand what people meant by "pain" since I didn't really feel pain, persay, at least not in the conventional sense. I've tried to explain this sensation to several doctors and they just gave me a confused, you're crazy look.

I walk down the hallway at work w/ my head down and eyes practically closed because the menthol sensation is just too horrible. I am glad to have found this thread and people that understand!! I hope you all find relief from this horrible sensation.

I plan on visiting Dr. Latkany later this year if I don't find any more relief for my eyes. I'll be sure to ask him about this!

[Stanza]

I get this too, and it's totally different from the burning sensation. I also get the gritting sensation. The menthol one is particularly unpleasant as you feel like there's really nothing you can do to explain it or help it.

[Rojzen]

a voice is emerging on menthol sensation; anyone without low TBUT?

What a great swell of recognition these posts form for that truly exasperating sensation that feels like menthol, or cold air, blowing directly on the eyes. . .

Interestingly, lots of us who have this problem also suffer from intermittent burning pain and grittiness. . .Thus far, though, all the symptom lists on artificial tear products seem entirely to neglect that windy, menthol disturbance, all the while those of us who live with it know that it is at least, if not more, problematic than anything else, because it essentially forces one to close or squint eyes shut, just in order to cope. . .

I've posted a q. about the physiology of this sensation for Dr. Holly, because I suspect he will be the first scientist to be able to explain and otherwise address the problem. . .

I also want to say, for those here who may not have tried protective eyewear INDOORS, on a 24/7 basis, it may be possible virtually to eliminate the menthol feeling, or, at least to reduce it to a really manageable level, through such eyewear use. . .I've been getting by that way for over 8 years now. . .

Nonetheless, I actually believe that a treatment will be developed that will help stop the menthol sensation . .or that there is something out there that may already have the potential to do so. . .

Does anyone here have menthol sensation, btw, who does not also have MGD and a very low tear break-up time? That would interest me greatly. . .

Finally, I have to credit the term "menthol sensation" to a lovely young Egyptian post-doctoral fellow I met at Dr. Tseng's office in Miami, about 7 years ago. . .Like so many of the doctors who end up in our field, this one himself had DES, and, particularly, suffered from menthol sensation. . .

[calli66]

I never had "menthol" until I got four punctum plugs. I didn't have so many excess tears that they overflowed, but just kept my lids uncomfortably moist. At the time I thought of it as excess evaporation. After 5 weeks, I had the uppers removed, and the sensation went away completely.

My "logic" says that the watery tear layer predominated over the oily layer during this time, but that my meibomian glands normally produce enough oils to keep my minimal tear quantity balanced.

It makes total sense that protective eyewear can really help with this symptom, because as long as there is air movement or a difference in humidity between the eye surface and the environment, the tears will continue to evaporate and be produced (and evaporate again).

Just curious Rojzen, do your tear glands produce a "normal" amount of tears---and it's just that your meibomian glands are non-functional?

Calli