Getting peer support for dry eye

It's Saturday! This post will be yet shorter and sweeter than the last, and then I'm headed to the movies with my daughter!

Local support groups

There are, unfortunately, very, very few local support groups specifically for dry eye. The only long-term group that I know of, in fact, is the wonderful Orange County Dry Eye Support Group in the LA area. I am hoping that, somewhere in the 2017-2018 timeframe, I'll be able to move forward with my longtime dream to be part of organizing a national network of dry eye support groups.

Meantime, the best resource for local groups is the Sjogrens Syndrome Foundation. (Obviously, many, probably most of you don't have Sjogrens, but their groups are the closest thing there is, since most people with Sjogrens Syndrome have dry eye.)

The SSF local support groups they have are treasure troves of practical information on who the best local dry eye doctors are, and which doctors are attuned to the needs of specific disease groups (Sjogrens, obviously, but others too), and doctors who are equipped for specialty treatments such as autologous serum drops, Lipiflow, etc.

But just the ability to meet up, in person, with other people who understand your situation and may have practical pointers about coping and daily management, is huge. 

Social media blessings and curses

There are the Dry Eye Talk forums, and Sjogrens World, and probably many others by now that I don't even know about.

There are Facebook groups - DryEyeTalk, "Dry Eye, Blepharitis, MGD, Corneal Neuralgia", Dry Eye Syndrome Support Community (run by a couple of ODs) and more. Facebook groups don't lend themselves to the kind of in-depth discussions and archive prowling that forums do, but they're great for immediate connection and feedback.

The BLESSINGS of social media include:

• Validation! Immediate connections with people who get it. This is really important.
• Support! Kind voices that will not minimize your experience.
• Practical tips! A great deal of the lifestyle management information you need and which cannot be had anywhere else.
• Information! Tons of quite good information on diagnosis, treatment and management that, again, you may not be able to get anywhere else.

The CURSES of social media include:

• An over-abundance of dry eye paraphernalia-peddling predators (ooooh, that was a really fun term to coin!). They come in many guises, including doctors and patients. They usually come bearing supplements. They exploit the vulnerable.
• The illusion of understanding trends, especially treatment failures. Hearing similar voices and reading similar experiences online often gives you a completely unrealistic pseudo-insight into what's normal. It's all too easy to think a certain treatment "doesn't work" just because 15 people have dissed it on Facebook in the last 36 hours. One must always bear in mind that only people with a problem post in these forums... all the ones that got better and went away, or at any rate had a successful treatment course, are invisible. You cannot get anything but a heavily skewed perspective on macro trends in a Facebook group.
• Unhealthy addiction and way too much screen time, which is a bad thing when you have dry eye.
• All kinds of really, really, really bad ideas about the 'natural' things you should put in your eyes that are "safer" than drugs. I don't like drugs either, but-but-but be reasonable, people :)

Getting good dry eye care

It's the weekend, and I'm a day late anyway, so I'm going to keep this short and sweet! Well, relatively.

A couple of "oldies but goodies"....

Many years ago I wrote a couple of lengthy articles about dry eye medical care, particularly as regards navigating dry-eye specific pitfalls of the doctor-patient relationship. There have been a lot of changes in the dry eye world since then, but there is still a great deal in those articles that's directly relevant to patient needs today, so I decided to post the links here.

How to get better care from your dry eye doctor, covering:

• Is my current eye doctor worth investing in?
• How are my goals and measuring sticks different from my doctor's?
• What should I expect, or not, from my doctor?
• What is my doctor expecting from me?
• How do I bridge communication gaps?

How to find a better dry eye doctor, covering:

• Resolve to be a Truly Great Dry Eye Patient
• Consider both MDs and ODs
• Determine what you want, or rather need, from a new doctor
• Where and how to look, and whether to travel to a specialist
• Preparing for the first appointment

Navigating current trends

Things are changing all the time. Treatments that hardly anyone even knew about ten years ago are being kicked around online frequently and while they definitely aren't all being scouted in non-specialist eye care practices, awareness is clearly on the rise. Demographics are also putting heavy pressure on eye care practitioners to bone up on the latest and greatest dry eye tools.

Each change brings its own issues along for the ride, of course. I'm going to highlight here random current issues to supplement the previous articles.

The "Dry Eye Specialist" phenomenon and how to beat it

In the aftermath of the 2008 recession, which drained Americans' discretionary income for things like LASIK, a curious trend followed. Clinics that primarily advertised as laser surgery centers in the past gradually began hanging out a new shingle. The wording varied, but the bottom line was they were starting to tout themselves as a the local go-to dry eye clinic. This trend continued and picked up speed in ensuing years, fueled by things like demographics, Lipiflow emerging as a much-needed replacement cash cow, and increasingly demanding consumers who are suffering enough to not settle for the "Ye Olde Schirmer, Plug-n-Drop, oh, and Restasis too because we might as well" school of dry eye diagnosis and treatment.

Unfortunately a lot of these new self-described dry eye specialists and dry eye clinics really don't offer much more than increased advertising. Step right up, folks, get your Xiidra script here!

Would the real dry eye specialists please stand up?

Technically, there's no such thing (it's not a formal subspecialty as far as I know), so anyone can label themselves a specialist. Trying to find a truly helpful doctor is extremely challenging unless you already know the dry eye landscape and its craters quite well AND are social media savvy.

My rules of thumb have always been that many people can benefit from a really smart optometrist on their team for regular visits, because optometrists by and large are more accessible and will spend more time with you than most ophthalmologists. But you also want a good cornea specialist ophthalmologist with a specific professional/scientific (as opposed to financial) emphasis on dry eye, particularly when you're in the worst stages and/or don't yet have a really super-thorough and accurate diagnosis, and also if you have special medical needs.

Finding the right kind of optometrist is all about hunting on social media, unless you're lucky enough to have access to the pooled knowledge of a good local support group. Finding a cornea specialist ophthalmologist? Scour the resumes. The problem with cornea specialists is that a significant majority aren't actually interested in corneal disease. They're interested in corneal surgery, probably refractive (take a bow, LASIK industry, you have transformed the profession). The ophthalmologist gem you are looking for is a cornea specialist that really digs disease, as opposed to just snatching at and sporting the dry eye diagnostics and treatments du jour as announced from a podium somewhere.

The "Micro-Manage Your Doctor" trend

So here's another thing I'm seeing more of these days. The hyper-educated patient who goes to their doctor with a lengthy shopping list of (a) tests they want done, (b) potential diagnoses they want to discuss, and (c) potential treatment options they want full-on support for, including but not limited to drugs (manufactured and compounded), devices, surgeries, consumer products, dietary plans and oh yes a long litany of dietary supplements.

I am absolutely all for educated patients and partnering with our doctors.

But... moderation in everything, folks. 

Dry Eye - Practical Prevention Pointers (2 of 2)

Yesterday's tips were focused on recognizing dry eye symptoms for what they are (or might be), and getting ahead of them with some purely practical prevention pointers. Today, we're going to shift to prevention tips for navigating some medical stuff.

Don't hurt yourself through ignorance...

...about drops, drugs, devices and surgeries.

The fact is, a great many medical treatments, drugs (ocular and systemic), and surgeries involving the eyes and lids CAUSE dry eyes - sometimes mild, sometimes temporary, but also sometimes severe and sometimes chronic or permanent. Getting dry eye at all, in any form, is lousy. Getting a really nasty, persistent, life-altering form of dry eye and knowing it was preventable is truly the pits. 

There are far too many forms of medically-induced dry eye (also called 'iatrogenic' dry eye) for me to cover here, so I'm just going to hit on a FEW frequent offenders that should be emphasized. Iatrogenic dry eye is actually such a big topic that the international medical consensus project known as TFOS DEWS II, whose 10-year report is about to be published, had an entire subcommittee and massive chapter focus just on this!

OTC Drop Shopping Tips

Look for eye drops with these things on the label:

• Preservative-Free. Almost anything preservative-free, by the way, will come in a box of 30 or more individual vials. Waste of plastic? Sure. On the other hand, preservatives (i.e. what makes it possible to put eyedrops in a bottle) are toxic to the cornea. So pick your poison.
• Lubricant Eye Drop (or geldrop). 
• Alternatively, homeopathic drops. For mild dry eye or ocular allergy symptoms, they can be helpful without posing the types of risks medicated drops may introduce.

Try to avoid purchasing any of the following eye drops for regular use:

• Redness relievers (vasoconstrictors). These are doubly damaging to the cornea. First, they have a rebound redness factor when used repeatedly, and second, they are usually preserved with benzalkonium chloride, which is quite toxic to the cornea. If you must use redness relievers, do so infrequently — save them for special occasions. *BUYER BEWARE*: There are many 'combo' drops on the market these days, and they get terribly confusing because they also claim to be lubricants. Just don't buy things with a redness reliever ingredient.
• Antihistamine (allergy) drops, except for brief use, or unless you're seeing an eye doctor, in which case they'll probably want to put you on a better, prescription allergy drop anyway. That's *if* you really do have ocular allergies — because maybe your eyes are itchy due to dryness, after all! But as I was saying, antihistamine drops are drying, and again, have toxic preservatives. That's true of both OTC and Rx allergy drops. If you've got to use one, use  the one that works the best.
• Eyewashes and salines, except for your first aid kit. Look out for preservatives. Don't overuse anything like this - they may be wet, but they have no lubricating properties and they dilute your precious tear film, which you can't do too terribly often without paying for it.

Rx Drop Awareness Tips

TOP TIP: Avoid using anything preserved on a daily basis for longer than a month if possible. If you have to, talk to your doctor about the preservative side effects and if it's possible to get a preservative-free version.

• Glaucoma drops, historically, are top offenders. They have to be taken daily, and daily exposure to the most toxic preservatives can be a big dry eye contributor. There are many preservative-free glaucoma drops now, and ones with milder preservatives. Make sure you have the preservative talk with your glaucoma doctor.
• Steroid drops and antibiotic drops are two more commonly used classes of eyedrops that are usually preserved with the most toxic preservative (benzalkonium chloride). If you don't need to be on them long, you will probably not want to bother worrying about it, but if for any reason you need to stay on them longer than a conventional course lasts, talk to your doctor about preservative side effect concerns, including dryness.

Drug Awareness Facts

Oodles and gazoodles of drugs are, or at any rate may be, drying. So it gets tricky talking about them ("Fine, but now that I know that, what do I do?"). With drugs in general, there is no free lunch, and it's all about navigating the tradeoffs. But the aspect I would want to emphasize is that IF you know you are at dry eye risk for other reasons, AND the drug you need to take is on the dry eye-causing spectrum, it's worth a conversation with the prescribing doctor about your concerns, drug selection and alternatives, and dosage. For example, there are a ton of antidepressants on the market, and while not all of them may be appropriate for you, you can at least raise the dry eye side effect potential with your doctor and ask them for help to pin down those suitable for you that are less frequently associated with dry eye.

Top dry eye offender drug categories (in random order):

• Antihistamines
• Nasal decongestants
• Blood pressure medications (beta blockers, diuretics)
• Antidepressants
• Antipsychotics
• Parkinsons drugs
• Hormone therapy; oral contraceptives
• Acne medications
• Sleeping pills
• Pain relievers

Device hangup: CPAP and APAP

At the Dry Eye Shop we talk constantly with people whose eyes are dried out by their CPAP masks — they call, often after referral by their doctor, to get advice on shields, masks, or patches they could use to protect their eyes. CPAP is in such common usage, and has been for so long, that it is absolutely staggering to me how many people still struggle for a long time with this before someone finally tells them there are solutions and even products made specifically to help with it.

It would be nice if everyone could get a CPAP mask that fit perfectly and didn't leak, but till then, physical protection for the eyes, even if only a strip of plastic wrap, is very important for many CPAP users.

Surgery hangup #1: LASIK, et cetera

July 20th, 2017 - today! - is my 16th 'laserversary'... a term many of us who experienced laser surgery complications in the old days coined for a memorable day that we don't exactly celebrate. As you might imagine, I'm not a terribly big fan. No regrets about my own experience, because it ended up determining a new course for my life that gives me a great deal of fulfillment every day, but because it came at a high cost to vision and comfort, I would never recommend it for someone else.

Among the many things on the scale stacked up against LASIK, the dry eye risk features prominently, and all the more so because no one who gets LASIK has any idea how bad post LASIK dry eye can be when it's bad. 

Top illusions to avoid suckering to:

• That you can escape this risk by going to the best, most reputable surgeon in your area. (Naw. We all did that too.)
• That technology has improved so much this doesn't happen anymore.
• That dry eye treatments are so good it doesn't matter.
• That if you already have dry eye, a little increase doesn't matter. (Actually, it might mean the difference between dry eye and DRY EYE.)
• That the worst that could happen is you need eyedrops or Restasis or Xiidra or plugs.
• That your surgeon will be will equipped to help you through any ensuing dryness. (LASIK surgeons and dry eye specialists just don't normally come under the same label.)

Surgery hangup #2: Elective eyelid surgeries (blepharoplasty)

There is a particularly painful version of dry eye that comes sometimes with blepharoplasty - specifically, when the lids come up too short.

Top tips for lowering risk:

• Seek only an oculoplastic surgeon, NEVER a plastic surgeon, no matter how qualified! Oculoplastic surgeons are ophthalmologists who do surgery on the eyelids. General plastic surgeons don't have enough specialized knowledge of the tear system.
• Get a complete, detailed dry eye workup with a specialist before a blepharoplasty, to see if you have any pre-existing dry eye or dry eye risk factors that could make you unusually vulnerable to dry eye side effects.

Dry Eye - Practical Prevention Pointers (1 of 2)

Today's post is for you if:

• You have no dry eye symptoms (so far as you know), OR
• You have mild dry eye symptoms 

Today's (and tomorrow's, for that matter) will be bit of a hodgepodge of the kinds of tips I wish everyone without dry eye knew, for prevention purposes. Enjoy!

Recognizing early symptoms (hint: dry does not mean dry!)

• Watery eyes. Sounds counterintuitive for "dry" eyes to be excessively wet, which is why so many people don't realize that they have dry eye! The answer lies in the type of tears. The ordinary top coating of the eye is what's called basal tears, which are a combination of water, oil to prevent evaporation, and mucous to help them adhere to the surface of the eye, plus lots of other goodies. Basal tears are there to sharpen vision, keep you comfortable and protect and nourish the eye surfaces. But if your basal tear layer is lacking in some way, the eye surface gets drier and irritated and signals the brain to tell the lacrimal glands to pump out some emergency tears (called reflex tears) — to re-wet the eye and if necessary to wash out whatever dirt got in — though that might just be because the dryness sensation makes it think there is actual grit. These reflex tears are what you experience on a windy day. They do NOT have all the extra goodies; they're mostly water. The more of them you produce, the less comfortable your eyes will be - similar to when you have a long cry and your eyes are sore and feel 'stripped' afterwards. All that to say, if your eyes are watery more frequently than normal and in more circumstances, dry eye could be the reason. (It's not the only reason; you could have blocked tear ducts. But either way, get thee to a good eye doctor.)


• Feels like something's in my eye: Formally known as foreign body sensation.... Of course, there might actually be something there. But a frequent or chronic sensation of this kind is quite common with dry eye. If it's this kind of 'phantom' foreign body feeling and there's no debris visible, keep some preservative-free lubricant eye drops handy and avoid using water or saline to wash out your eyes, because those will actually make it worse, by washing the better part of your tears away. Water and saline should be reserved for true debris-in-the-eye emergencies.


• Eye allergies  (classic signs: redness and itching). An immediate clarification needed here... I am not saying that eye allergies are a symptom of dry eye. They're two different things. But they overlap a lot and sometimes pose chicken-or-the-egg dilemmas; so if you have, or have been told you have, ocular allergies, make sure you have a conversation with an eye doctor about dry eye as well. An eye with allergies going on is going to tend to be drier (did I mention that antihistamines, by the way, are very, very drying?). On the other hand, a dry eye, that is, an eye that does not have a good solid healthy basal tear layer, is more vulnerable to allergens and environmental stresses in general. Incidentally, most allergy eye drops, both over-the-counter and prescription versions, are preserved with a toxic preservative called benzalkonium chloride, which is also drying. Can't escape! 


• Inflamed, red, or scaly eyelid margins: I'm talking about where the base of your eyelashes are. If you see these as being irritated first thing in the morning, any chronic redness or soreness or if they're looking a bit scaly or you have 'eyelash dandruff', you should visit an eye doctor and have a conversation about blepharitis or (longer name, broader category) meibomian gland dysfunction. Meibomian glands secrete oil through little orifices all along the base of the lashes. The most common type of dry eye is NOT when your tear production is decreased — it's when your oil production is decreased because of chronically clogged oil glands. If you don't get enough oil into your tear film, your tears evaporate too fast, which has the same effect as if you didn't produce enough in the first place.


• Light sensitivity, especially in conjunction with other symptoms like the ones above or with tired, achy eyes or gritty, dry feeling eyes, is another common sign of dry eye.


• Contact lens intolerance. This should probably head the list, but it's the one everyone dreads — no one wants to anticipate the day when they can't wear contacts any more. (Though truthfully, these days, there really are some good dry eye-friendly options with some of the newer scleral lenses coming on the market.) Contact lens discomfort is often because of increasing dryness and should not be ignored. Just quitting wearing contacts doesn't mean the problem's fixed, either. 

Simple, easy prevention suggestions

• Don't abuse contact lenses. Be compliant with all contact lens care steps; never wear contacts overnight; don't continue wearing them when they're getting too uncomfortable; and report any symptoms to your eye doctor.


• Pay attention to symptoms. It's easy to ignore mild things that don't seem like any big deal. With dry eye, though, sometimes those 'mild' symptoms can be masking a brewing condition like meibomian gland dysfunction that may, down the road, turn into a much more uncomfortable form. Get ahead of things, discuss them with your eye doctor early on. Speaking of which:


• See an eye doctor for regular exams, not just for glasses and contacts or emergencies, and ask questions if you have any symptoms. Don't expect them to flag mild dry eye issues without prompting. Talk to them about mild symptoms, ask if they can do a bit of a workup of your tear system, and if they have any prevention recommendations. 


• Take extra precautions when using the computer for long stretches. With dryness, it's all about the blink. Eyelids pump tears out; eyelids spread tears around; and eyelids keep part or all of the surface covered, reducing evaporative tear loss. The less you blink, the drier you are, by definition. My computer suggestions?
• Blink more.
• Keep hydrated.
• Keep your monitor as low as ergonomically acceptable.
• Adjust your screen lighting if necessary. Try handy tools like justgetflux.com. 


• Protect your peepers from low humidity and wind by wearing wraparound sports-style eyewear. There are many that have a slim lining of foam that helps with additional wind-proofing. The closer the fit, the higher the humidity immediately in front of your eyes will be. 


• Keep your lids squeaky clean. Inadequate eyelid hygiene plays a role in blepharitis. 


• Do a gentle warm compress nightly before bed, like a gel pack or rice baggy. 


• Protect your peepers during sleep — another low tear production time — by using a sleep mask, especially if you have air conditioning, heating, or ceiling fans going. 


• Supplement with Omega 3s. They're good for you in so many ways, and eyelid / oil gland health is one of those many.

Part 2 of Dry Eye Awareness Month: Getting help

The second of our three-part series on dry eye is all about getting help for dry eye.

Topics I'll be writing about for the next 7 days:

1. Practical Prevention (1 of 2)
2. Practical Prevention (2 of 2)
3. Getting good care
4. Getting peer support
5. Managing daytime symptoms
6. Managing nighttime symptoms
7. Recognizing and addressing mental health impact

Dry Eye and Mental Health

"dry eye" vs. DRY EYE

For the benefit of those scratching their heads over the dry eye and mental health connection, I thought I ought to preface this post with, once more, the distinction between mild, irritating-but-not-life-altering dry eye symptoms, and the type of full-on dry eye situation that sends your OSDI scores rocketing and can so easily send your life into a tailspin when things aren't able to be brought under control within a reasonable amount of time.

Dry eye in all caps — and bear in mind I'm speaking in terms of symptom severity (i.e. what I experience), rather than clinical severity (i.e. what my doctor observes / test results), since they do so often diverge — is a completely different beast than the dry eye that just means putting in drops now and then.

DRY EYE is a high impact disease cloaked in a trivial-sounding name.

Depression is par for the course.

I find myself constantly wanting to reassure people who are engulfed by depression that this is normal when you're at a certain stage in a major DRY EYE journey.

Now, if I seem to get a bit pedantic, circling back over and over to underscore definitions and distinctions, it's because some things really are frequently and stubbornly subject to misunderstanding — hence I am not going to bother apologizing for being repetitive. 

So, first of all, when I say a major dry eye journey, I'm talking about major symptoms and major life impact, with or without an equally severe clinical condition identified by the eye doctor. Of course, the presence, and even more, the absence of major clinical conditions will play into the depression equation in their own special ways, but my real point is that many dry eye symptoms, when intense enough and/or persistent enough, are more than enough to routinely plunge people pretty far into depression. 

Secondly, when I say depression, I'm not talking about feeling low for awhile — I'm talking about something more akin to major depressive disorder. Something that takes you down — way down, in a big way, and for a considerable period of time. A major life event, in fact.

Suicidal ideation is common.

I don't know that I even have anything more to say about this than the simple fact of it. I think that it's vital for all those who are experiencing it to know that, no, it's NOT just them, and no, it has NOTHING to do with them coping poorly. This is a shared, common experience for which there are sound reasons.

And here are some reasons.

I think of it as a dry eye crisis, brought on by the cumulative impact of several factors at once. Which combination of factors, of course, varies, but there are threads in common.

The crisis comes at different times for different people, and can recur. One common pattern is a relatively sudden onset of massive dry eye symptoms that quickly escalate in spite of (and perhaps occasionally because of) a whole slate of treatments thrown at them in the early months. After the first three or four doctors and several months of increasing struggles, it's hard to avoid starting to panic about the future. Another scenario is someone who has had significant dry eye, clinically, for years, and been on many treatments, but only recently had a worsening of their symptoms that has just become too much to cope with when coupled with a worsening prognosis.

The specifics and timeline vary for everyone, but the common factor is the global impact on the person, particularly their mental health.

Here are a variety of factors I commonly come across in interacting with dry eye patients — physical, emotional, practical, medical, financial — that I believe all can contribute to the escalation of anxiety and depression in people with dry eye. This is not an exhaustive list.

• Pain. Note: I use this term very broadly to encompass dry eye sensations that many people would not necessarily class as pain, but which have the same effect. For example, constant burning, grittiness, etc. — in general sensations that go away only when your eyes are closed, at best. Chronic pain in general is well known to be associated with depression. Meantime, the cornea (the tissue most affected by dry eye) has more densely packed nerves than almost any other human tissue. It is designed to hurt — a lot — when under siege.


• Loss of sleep. Many people with night dry eye wake up repeatedly through the night to apply additional lubricants, or are woken up by eye pain. Fear of going to sleep is a powerful factor for many, too, especially those with recurrent corneal erosions.


• Impact on common daily activities. Many people with dry eye cannot use a computer, read, or do other close work for long, and find their hobbies interfered with. Outdoor activities become much more difficult due to pain from wind, and also (for many) light sensitivity.


• Restricted driving. Ability to drive may be limited to a small range due to pain from air conditioning and heating. When vision is impacted, driving may not be possible at all.


• Impact on work performance. Office environments and jobs with any adverse environment (outdoors, or indoors with low relative humidity) can impair basic work efficiencies. Many workplaces are not friendly to the concept of accommodations, and some patients cannot safely discuss medical issues with their employers.


• Fear of job loss.


• High cost of treatment. Many of the most common treatments are not covered by insurance and are very expensive. Most dry eye patients have to use a great deal of over-the-counter products, which are also out-of-pocket expenses that add up quickly.


• Generalized financial fears. As dry eye goes on, and particularly if symptoms are continuing to worsen, there may be a broad fear of the future due to the likelihood of decreased ability to work and increased medical costs.


• Symptoms not quantified. The perception that it's all 'subjective' leads to a host of problems, from minimizing their significance in general to failing to diagnose correctly. There are scientifically validated instruments available to quantify symptoms, but few patients know of them and they are still used infrequently in clinical practice.


• Counterproductive nomenclature. "Dry eye" is with us forever, but... as I argued recently in another post, "dry eye" is a terribly trivializing misnomer affecting how patients think about themselves and how effectively they can communicate about their experiences with everyone from their eye doctors to their employers to their personal support system. 


• Misdiagnosis (and associated inappropriate treatments).


• Inadequate information about one's diagnosis and prognosis.


• Inadequate medical care. Patients commonly see several doctors before finding a specialist who can actually help, and in the meantime, may be spinning their wheels with unhelpful treatment and inadequate support while their condition is worsening.


• Inadequate palliative care. Eye doctors as a whole are poorly equipped to educate patients about the non-medical or "lifestyle" steps they can take to address symptoms. For the first ten years I ran my DryEyeShop business, the most common phrase I heard from people on the phone after a conversation about simple remedies like moisture chambers was, "Why didn't my doctor tell me?"


• Anger and/or guilt associated with elective surgeries. Anyone who has gotten dry eye from LASIK or elective blepharoplasty knows exactly what I am talking about. The psychological impact of an elective surgery gone awry is extraordinary and profound, even if uncomplicated by other factors — yet these patients always have other complicating factors, among which tensions with the surgeon may figure prominently, including as relates to failures of pre-surgical screening as well as post-operative treatment.


• Sensation of isolation. While many people find understanding peers online, most people have no one near at hand who understands their experience.


• Eyes being the organ affected. The innate fear of vision loss is well known and well documented. Any eye disease perceived as chronic can trigger this, consciously or otherwise — and more likely the latter. 


• Belief that one isn't coping well. I deliberately left this for last, in order for readers to see the irony of it in context. It's very, very common amongst those in their first six months to a year particularly when they have had no validation of the magnitude of what they're dealing with, so they have no context for it. All they have is how it's being reflected back to them by doctors, peers, and family, and if the wrong things are reflected back, the impact can further cripple their ability to advocate for themselves. It's also dangerous, for those who may be approaching suicidal, because they become unable to talk about the psychological impact of their experience, since they have every reason to expect it will be interpreted as a massively inappropriate, inexplicable response to their situation.

Depression is par for the course. (See why now?)

Does it ever get better?

My answer to this question is always a resounding yes... as long as you are willing to put some careful thought into what "better" actually means.

Getting better is not a binary concept.

There's often a tendency to think about dry eye in what I would call binary terms. Black and white. Two choices. Curable/incurable. Permanent/temporary. Chronic/treatable.

This kind of thinking is, I believe, fundamentally harmful to patients who are struggling. When you're in pain or have other persistent, perhaps disabling symptoms affecting daily activities and quality of life, you have to be able to think in terms of incremental improvements rather than wholesale leaps that can't be visualized or readily achieved. Otherwise, you forfeit hope.

Here's an example of a classic communication dynamic that always causes me particular concern:

Doctor calls it "chronic".

Patient hears "incurable".

Doctor is talking about (for example) an inflammatory condition of the patient's meibomian glands that s/he expects to need daily attention on a long-term basis.

Patient is thinking about waking up every few hours to put in more ointment, getting up in the morning with sore eyes and perhaps lids stuck shut, going through the day in constant discomfort, and seeing activities getting more and more curtailed.

Patient looks at that composite. Hears "chronic". Begins extrapolating that composite of today's reality out into the future. Then, perhaps, hears an even worse word: "Progressive". Begins picturing every succeeding decade of life getting worse. And thinks: "I can't do this."

Then the emotional snowball effect.

Patient becomes stressed, anxious, depressed. Ironically, doctor may advise them not to use antidepressants because their eyes may get drier.
Patient feels trapped with too few choices.
Patient becomes less compliant, more compulsive, trying too many things at once and nothing for long enough.
Patient becomes less able to advocate for self and more vulnerable to the minefield of communication pitfalls with their doctor.

This is an example of how the classic disconnect plays out: where doctors think in terms of clinical signs, and patients think in terms of symptoms and life impact. This disconnect can have a particularly potent impact on the patient's mental wellbeing when discussing prognosis and progression. Why?

First of all, because eye doctors often really do not understand the degree, nature and extent of the life impact of the symptoms their patient is experiencing. Secondly, because patients who are struggling with major symptoms are necessarily struggling just as much mentally as physically, and therefore need hope to keep them going. Hope is vital.

Thus:

We should think both more broadly, and more specifically, about what "better" means.

"Better" can mean a whole lot of things.

We can talk about "better" in terms of clinical milestones: improvements to your staining, your tear film osmolarity, the state of your meibomian glands, and so on.

We can talk about "better" in terms of your symptoms, in numbers terms, like scoring yourself on OSDI regularly, or keeping a log.

We can talk about "better" in terms of activities. How long can I comfortably use a computer or read a book at a stretch? Can I do any of my favorite outdoor activities and if so, for how long? Can I travel? Can I drive at night? Can I tolerate an office environment?

We can talk about "better" in terms of mental/emotional health. Am I in the midst of crisis, needing extra support and maybe treatment? Am I seeing myself come out the other side?

And we can talk about "better" in global terms. Is dry eye running my life, or has it been relegated to its 'proper' place - whatever that means?

Which then allows us to set specific goals — and go about achieving them.

For the dry eye patient who's been struggling for awhile, it is hugely in their interest to start articulating specific goals and sharing them with their doctor. A specific goal is an achievable goal! I might not be able to 'cure' my dry eye. But can I find a way to get more computer time, if that's really important to me? Very, very likely — because once I've specified the goal, I can then think more broadly when it comes to possible ways to achieve it. It's not just about dry eye treatments; it's about management and creative solutions.

Everyone will have different life priorities and goals, and different tradeoffs we're willing to accept, different compromises to navigate.

What are your priorities? What are the tradeoffs you're willing to accept? What are the compromises you can make in order to achieve what REALLY matters to you?

• For one person it's going to be all about an active lifestyle.
• For another, who prefers to avoid medications it's going to be all about drugs: Is there a way I can get to a point where I'm using no Rx drops, or no pain meds?
• For another it's going to be the dependencies: Can I get to a point where I don't have to do X routine absolutely every day in order to be OK?
• For another, it's going to be aesthetics. Maybe you'll do absolutely anything except wear dry eye glasses.
• For another, it's all about pain levels - period. You'll do anything if you can only keep it below a 4 most of the day.

Next up is what's already been touched on today - dry eye and mental health.

How is dry eye treated and managed?

Treatments, treatments, and treatments... oh joy!

Away back in the day, one of my biggest hangups was the plethora of doctors who never seemed to venture beyond plug-n-drop.

Then Restasis joined the club. Then oh-so-gradually, plug-n-drop began morphing into something a little more sophisticated.

Happiness! There is life beyond artificial tears and expensive, complication-prone plugs and just plain expensive drugs! Only... oops... it might involve even more expensive devices and treatments. Sigh. Never mind. At least there are developments, and increased research and investment, and that's terribly important.

The plague of cookie cutter, one-size-fits-all treatment regimens, of course, persists in many an optometry and ophthalmology practice. Common treatments for aqueous deficient dry eye are still being foisted on unsuspecting MGD and lagophthalmos and RCE patients whose lacrimal glands are perfectly intact. But things are getting better. Eye doctors are, crucially, getting better at differential diagnostics in dry eye, and this is starting to guide their treatment recommendations more.

Formerly boutique MGD treatments have gone mainstream. Lipflow is everywhere, though due to its pricing and hit-and-miss success, not necessarily beloved everywhere. IPL continues to quietly gain momentum. I hear from people who have tried Pro-Kera much more frequently now than a year ago. And on down the line of a variety of treatments that were virtually unknown ten years ago.

Even formerly little-known treatments without commercial promoters are getting better known. Gone are the days when every caller to whom I mentioned autologous serum drops (I have been an inveterate educator on this option for more than 10 years) needed me to spell it for them... instead, THEY are sharing with ME about blood serum drops and asking if I've heard of them! Exciting times!

Best of all, my beloved PROSE and, more broadly, scleral lenses, not so long ago thoroughly disdained for dry eye applications, are rapidly heading mainstream. Perhaps too rapidly — new practitioners have had scant time to come up to speed on patients' actual needs. But it's just so good to see people learning about so many things that no one was telling them before!

Great cause for celebration, from my standpoint. After TFOS DEWS II is published, later this month, I'll be circling back to the treatment world and taking a closer look at all the options now on the table.

What is treatment, and what is management? 

Treatment encompasses the measures by which your doctor seeks to address dry eye disease and/or symptoms, including things s/he (a) prescribes for you, or (b) does to you (anything from in-office procedures to surgeries) or (c) instructs you to do. These may include:

• OTC drugs (artificial tears, gels, emulsions, ointments, sprays, etc.)
• Rx drugs (Restasis, Xiidra; topical antibiotics; topical steroids; systemic antibiotics; compounded drops and blood serum drops)
• Plugs & cautery
• MGD treatments like manual expression of the MGs; Lipiflow; IPL; Blephex; or, at home, warm compresses and lid hygiene, including OTC or Rx lid hygiene products
• Et cetera, et cetera, et cetera....

Management encompasses all the measures you take to improve your well-being, usually in parallel with treatment. (Incidentally, these are things The Dry Eye Shop are experts in — please make use of our free consultation services! We love brainstorming solutions!) These may include:

• Tools and strategies for managing dry eye at night: tapes, patches, goggles, shields, masks, ointments, learning to not open your eyes when you wake up, keeping drops on the nightstand, doing a warm compress right before bed
• Environmental modifications: Adjusting heat and A/C; humidifiers; using dry eye glasses; and so on.
• Computer use: Modifying time spent on computers; using special glasses; adjusting screen height and lighting settings; improving blink rates during computer use; and so on.
• Protective eyewear indoors and out.
• Lifestyle & activity modifications
• Dietary changes and supplementation
• Mental health & self care: assessing the global impact of dry eye on one's self; seeking treatment where appropriate; seeking personal support; seeking peer support; ramping down activities in the short term when necessary.

The roles of treatment and management in relation to each other will of course vary a lot. People have such a variety of needs and preferences and tendencies. Some will be content to address their issues at a purely medical level. Some, especially those with a profound mistrust of western medicine, will prefer to avoid the 'treatment' side altogether. Many, though, will benefit from a wise balance of medical treatments and practical management. 

The cruel truth of many health conditions is, of course, that in severe cases, the overall impact of the disease is such that it becomes extremely difficult to advocate for and care for one's self. In those cases, though, it's sometimes helpful to shift one's focus to the management side, and let the medical side go on auto-pilot for a bit without overthinking and over-sweating the details (assuming one is working with qualified professionals), while one comes to grips with what it will take to just keep going.

How do I know when something's working?

Treatment or management — is any of it actually working?

Such an important question, and yet so many people never have a sound basis to answer it!

Here are some simple questions to ask yourself when you're trying to decide whether something new you've tried is helping:

• How long have you been doing "it"?
• What exactly ARE you doing — i.e. exactly what combination of things?
• How many other things have you changed in that time? Have you changed 'extraneous' things like the type of lubricant you use, or overnight measures, or dry eye glasses, or other things?
• How are you measuring progress?
• Are you getting a medical opinion of progress at regular intervals, to assess your clinical improvement?
• Are you measuring symptom improvement in any rational way? (consider using OSDI to track symptom scoring on a regular basis)

It's not a simple equation. You can't effectively judge whether something 'works' if you're not willing to be methodical about evaluating it. 

Next, we'll look at long term results and how they play out!

How is dry eye diagnosed?

Back when I first started doing advocacy work in dry eye, it often felt like the patient had to become an expert before they walked in the door if they were to have any hope of coming away with an accurate, meaningful, well-articulated diagnosis.

Remember those days when the chances were relatively high that your symptoms would be totally dismissed on the strength of a sloppily administered Schirmer test (with no anaesthetic) and absent signs of surface damage? When dry eye was dry eye, and nobody seemed to know what a meibomian gland was or why they should care?

I'm so thankful for all the huge strides that so many optometry and ophthalmology practices have made since then in diagnosing the finicky details of dry eye and, just as importantly, in communicating those details to patients. But I believe that while these improvements to the standard of care have penetrated well into specialty practices, they haven't necessarily trickled down all that much to mainstream eyecare practices yet. It's certainly gotten much harder to pass yourself off a dry eye specialist on the basis of fitting plugs and prescribing drugs, which is great, but from the new patient's perspective, the reality of seeing multiple eye doctors before getting meaningful diagnosis is very much still there.

There's a multiplicity of good informational sites explaining what tests might be performed, so I won't spend time on those right now. (I don't actually believe in micro-managing this part anyway; I think it's more important to get yourself in the hands of the right kind of doctor.)

Instead, there are two areas I want to delve into today:

First, what IS a diagnosis?

In my personal opinion, "dry eye" is NOT a diagnosis.

Dry eye is a misnomer. It's a catchall. It encompasses all kinds of things. It does not accurately describe what the majority of people who supposedly have dry eye really have. It's too broad a label.

Imagine going to a cardiologist because of periodic chest discomfort. After a battery of tests, the specialist diagnoses you with "heart trouble" and shooes you out the door with a prescription or two. Really? "Heart trouble" is informative only in the sense that it identifies the organ affected. It tells you nothing about what's wrong or how the drugs might help.

So with "dry eye". It narrows things down to the tear system, which is necessary, of course, but if it doesn't go any further than that, it doesn't tell you what you most need to know, which is what's actually wrong and why — the vital context for understanding your treatment options. 

When I talk to someone who says their diagnosis is "dry eye", and even after probing has no more information to offer, I find they tend to fall into one of these two categories:

The truly "shallow" diagnosis

By "shallow" I mean with evidently no meaningful attempt to figure out what's actually wrong with the tear film. Are you not producing enough tears? Or are your meibomian (oil) glands chronically clogged, so your tears are just evaporating super fast? Are there other factors in play like eyelid closure issues? Nope... we just look at you through the slit lamp, maybe put a little dye in, and make a pronouncement.

The potential harm to the patient in these situations is that they spin their wheels for far too long on generic treatments that were never likely to help in their circumstances, and/or they do not get the treatments that ARE likely to help, because the specific problem hasn't been pinpointed. Again, the classic scenario is having the dryness treated as a tear production problem when it's really an oil problem. But there are other scenarios of diagnoses not going deep enough, to the patient's detriment, as well.

Then there's....

The correct diagnosis that the patient doesn't learn

I think that these days, many people are diagnosed pretty well, but the details just aren't communicated effectively. (Not that I take it for granted that it's a lapse on the part of the doctor — some patients just aren't paying attention and don't care — but honestly, if they're having enough trouble that they're talking to people they never met, like me, about it, chances are they're reasonably well motivated to learn what's wrong.) I think of people I speak with who, based on what they are able to share about their treatment history, clearly have been in the hands of a doctor who diagnosed some very specific things going on with their lids, but who really don't have an understanding of what's going on. 

The potential I would see for harm to the patient here is that when they don't know or understand their diagnosis, they're less motivated to be compliant, especially with instructions that are a nuisance. They're also more likely to be anxious.

Second, what is "mild", "moderate" or "severe" dry eye?

Here's the really touchy part of the diagnostic process: assigning severity levels. The classic scenario is when you are in real pain, or not sleeping at night, or not able to do really important activities, and the doctor says it's really not that bad, and honestly believes s/he is giving you good news. It's the perfect setup for mutual frustration. You end up trying to voice how much worse you feel than they think, and they end up thinking you are over-dramatizing things.

It's important to be looking at both symptoms and clinical signs individually when talking about severity. It is well known that these two things frequently do not correlate well, and yet that fact is frequently lost in practice in these appointments and conversations.

Your doctor determines the clinical severity of what you have, based on the tests they've performed of your tear production, meibomian gland condition, tear film osmolarity, signs of inflammation and so on.

But when it comes to symptoms, you may need to be the one to have to find a way to quantify symptom severity, unless your doctor is using some kind of symptom survey each time you have an appointment. Never rely on narrative alone for conveying symptoms. Numbers are almost always more effective when talking to your eye doctor. If your doctor doesn't have a tool to offer, use the OSDI questionnaire. Get the app for your phone if you can - it has the added benefit that you can track your symptoms over time and eventually may even be able to rate how well a treatment or combination of treatments is helping. Symptom severity is vital context for making decisions about steps you take to treat and manage dry eye.

In my ideal world, an appointment with the eye doctor about dry eye would always end with a discussion of how the clinical side and the symptom side relate (or don't), along with a discussion of strategies to manage symptoms and the expected timeline to symptom benefits from any medical treatments. Meantime, though, we can always take the initiative to get those conversations started and nurse them along.