I have severe dry eye. Help!
You may find this article helpful if any of the following are true for you:
- You're in a really bad place with dry eye right now.
- You're struggling emotionally.
- You need some ray of hope that it won't stay like this.
- You need some ideas about new directions to pursue.
1: Is there any hope?
Yes, absolutely. I've worked with people who have severe dry eye for almost fifteen years and I've seen many, many people in dire, hopeless states where there seemed to be no reason to believe things could get better... and I've heard from many years later and found they finally got to that "better" place and moved on with their lives. It happens all the time. One of the unfortunate things about the social media groups and forums is that people who get better usually go away. They aren't visible, therefore they don't exist, therefore nobody gets better, right? Wrong! But it might be necessary to carefully visit the meeting of the word "better" - for you personally.
What does "better" mean?
For many people with severe symptoms, especially if they're associated with one of the least "fixable" causes, the goal of returning to a baseline from years ago may not be realistic. The really vital part is not about "getting better" in the abstract, but getting better enough that you can move on with life without your eyes dominating your consciousness day and night. This is achievable. It can actually be very helpful to shift your thinking to identifying specific functional goals, rather than just having in front of you a moving target called "better". Think in practical terms. What is it you want to be able to do more of? More computer time, or reading, or regaining an outdoor activity you've had to give up? Sleeping through the night without getting up to add more lubricants?
Once you start looking at specific goals, the pathway to achieving them might start to look a little bit different. I think that a lot of people get stuck focusing exclusively on the medical side of dry eye. Think of dry eye as parallel paths: Yes, pursue the medical side, but pursue symptom management and quality of life improvements, including managing pain and managing the mental health impact, in their own right. So for example, many people spend years churning through all of the various medical treatments before they find that something as simple as dry eye glasses might actually help them return to doing the things they want to be able to do comfortably.
There's always more
One of the most frequent things I've heard from people over the years is, "I've done everything, and nothing helps!" Yet I could count on the fingers of one hand the times when I think that's actually come anywhere near being true. Drops, plugs/cautery, Restasis & Xiidra, a handful of MGD treatments, even autologous serum drops - these are nowhere near all there is. If you're feeling downhearted about there not being enough available solutions, you might want to browse the TFOS DEWS II Management and Therapy. It's very technical of course. But just the vast array of things that have been used for dry eye will blow your mind. There are also many new drugs under development. More often, though, things you think you tried actually need to be revisited.
We'll talk more about this shortly, when we get to "I've tried everything. What now?"
2. Why is it so hard?
Are you in a really hard place, and struggling with how to understand and accept it? Here are some of the emotionally taxing aspects of various forms of dry eye. Not all of these reasons apply to everyone, obviously - it depends what's going on with your eyes. But it may be illuminating to go through it and see how many you recognize in yourself.
- Because the cornea is the most sensitive tissue in the body. The sensations it produces are a really, really big deal.
- Because the condition has such a trivializing name.
- Because of financial challenges, including lack of insurance coverage for some treatments, high out-of-pocket costs for over-the-counter remedies, and worries about your job.
- Because of anger and/or guilt, if your dry eye resulted from an elective medical procedure such as LASIK or cosmetic eyelid surgery.
- Because it's inescapable. There is no time during your waking hours that you are not actively using your eyes.
- Because of anxiety and fear for the future.
- Because of your doctor doesn't seem to understand how much this is affecting you.
- Because you've tried so many things and nothing seems to be working well enough.
- Because you wonder why you're not coping, when others seem to be dealing with it so much better.
- Because you're in shock that this could be affecting you so much.
- Because you're taking today's experience, extrapolating it into the future and are terrified at the prospect.
- Because you're consumed with fear that it will never, ever get better.
- Because you're young, and it can only get worse from here, right?
- Because you've been through much bigger challenges in life, including health challenges, and came through with flying colors.
- Because you're experiencing scary, maybe even suicidal thoughts for the first time in your life.
- Because you feel isolated. You don't know anyone else who has experienced this.
These are just examples, but they should be more than enough. There are so many factors conspiring to make this hard. If you're struggling, you need to know that you're not alone, that it is normal to be struggling when faced with this kind of condition.
3. I've tried everything. What now?
There's always more.
No one's tried everything. There really is always more. In the old days, I used to hear from a lot of people who said they had tried everything, when really what they meant was they had tried every OTC drop on the market. Then it was drops, plugs and Restasis. Then it was ditto, plus Lipiflow.
These days, more and more people are very well educated about a wide variety of dry eye treatments, and when they say they've tried everything, some of them have a far longer, more involved list. But it's still not everything. TFOS DEWS II Management and Therapy report is pretty exhaustive, though, so for those who really think they've tried everything, that's something worth exploring. It will probably make you feel like you've just scratched the surface!
But first... Consider a variation on a theme.
With dry eye, it's all about the proverbial devil in the details. You may say you've tried everything, but that may simply mean you've dabbled for a few weeks or months in each thing you know about. You have not exhausted the possibilities. Sometimes what seem to be small differences make a big difference. You may have done lid scrubs and compresses for a long time - but maybe a different product will do better. Maybe you're getting your compresses too hot, not hot enough, too long, not long enough. Maybe you tried scleral lenses - but maybe they were too large or too small diameter to be comfortable on your ultra-sensitive eyes, or maybe a different coating or cleaner or saline would have made all the difference to a burning sensation you got when you tried them. Maybe you tried autologous serum, but only 20%, not 50%, or maybe platelet-rich plasma would have helped more. Maybe you tried Restasis, but gave up because it burned, and that's a totally legitimate reason to give up on a treatment for your already burning eyes, BUT what if you are one of those few that Restasis actually could help significantly and what if you could buffer that burning effect by putting in artificial tears 15 minutes before your dose? You get the point. None of these treatments are a simple binary "it worked" or "it didn't work". There are variations on a theme that might be worth trying. If your doctor has ever seemed frustrated that you've given up on things too quickly, it might be worth having some more conversations.
And also... Consider re-visiting your goals.
Sometimes when you have been battling dry eye for a really, really long time, you can get lost in the details of the medical side. I've noticed this more and more with people whose main issue is chronic meibomian gland dysfunction. Sometimes you can lose sight of the real goal - which is comfortable vision, right? - and instead be focusing on some perennially elusive state you want those glands to get to. It's understandable, because people are afraid of atrophy of the glands. But... I know people who are living well with absolutely no functioning meibomian glands. I'm not suggesting you neglect them, or fail to pursue the treatments that are available. I just want to suggest that you periodically revisit what you're trying to achieve, and keep an open mind about how to get there. Not all solutions are medical.
4. How do I get support?
Getting and staying connected to people who actually understand is a really important part of caring for yourself when you have a condition affecting your life this much. Some diseases are served by nonprofits with support group networks (Sjogrens Syndrome and Stevens Johnson Syndrome, for example). If those are not available to you, social media is the next best thing.
It's hard, when you have painful eyes, to have to use the computer for support, so you have to be smart and use it sparingly, but keeping connected is important. No one understands this stuff the way fellow patients do. And if you are not fortunate enough to have people within your immediate reach that are supportive and empathetic even without having this experience, it's especially important to have the validation and encouragement of those who have been there.
Facebook is the easiest way to get connected to people who understand. Many people who do not use Facebook for anything else use it for the private support groups.
The main groups that the Dry Eye Zone hosts on Facebook are:
- My Big Fat Scleral Lens (we also have regional scleral lens groups)
- PROSE Users
On our Library page you can also find a list of many Facebook and other groups that may be helpful, either on dry eye generally, or on specific diseases that may be relevant to you.
Facebook definitely doesn't suit everyone. If you want to be more anonymous, or you want to have more in-depth discussions, or you want to be able to search archives more easily, try DryEyeTalk.com. You will probably see much more in depth information and discussions here than anywhere else, although it doesn't have the instant gratification of Facebook groups.
If you're not comfortable with live interactions with others online, you might just want to start at dryeyestories.com. Consider sharing your own story anonymously. Search the other stories on keywords that overlap with your situation or needs.
As always, if you need help getting connected, please reach out to us here at the Dry Eye Zone.
5. Night protection
For people with moderate dry eye, drops, gels or ointment may be plenty to keep them comfortable and safe overnight. Not so with severe symptoms, especially if complicated by additional issues such as nocturnal lagophthalmos or recurrent erosions.
I've always felt a good recipe for better nights is three-pronged: Warm compress + good lubricant + physical barrier protection overnight. All three of these elements, though, may require a lot of fussing with the details in order to optimize them for your needs. Every one of us is different!
Compresses: For some people, warm compresses are soothing. For others, they are irritating. But if you have MGD and have been told to do compresses, it's for the therapeutic benefit (i.e. loosening up thick oil secretions), not necessarily comfort per se, so it's worth troubleshooting to find the method that you tolerate best. There are a great many products on the market, from small self-heating gel packs to rice baggies to USB powered masks. The conventional hot washcloth is probably the least effective, because they cool down too fast, and people often get them too hot so that they will stay warm longer. - Night is the most practical time to do compresses, because any blurring from the weight/pressure or from oils seeping into the tear film won't matter if you're just going to bed right afterwards, and if heat irritates your skin, the effects will have time to dissipate.
Lubricants: Experiment. Conventional wisdom says the thicker it is, the longer it lasts, not everyone does well on greasy ointments. Sometimes a gel or a drop with a particular formulation will actually work better in the big picture. FreshKote and Oasis Tears Plus are "just drops" but they are very, very popular for overnight use, and with reason.
Physical barrier protection a/k/a goggles, masks, shields, tapes, etc.
In the Dry Eye Shop, we have extremely detailed practical advice about navigating these options, so we won't replicate it all here. Please make use of all our resources to get an understanding of what's most likely to meet your needs!
- Compare night products: This is a matrix with a lot of the most popular ones, identifying common situations that each tends to be suitable or UNsuitable for.
- Night product selection tips: This article walks through all the considerations that might affect what will be most helpful, as well as most practical, for you, ranging from your specific diagnosis to your sleep style.
- Individual product descriptions: We provide all of the manufacturer's descriptions, but also a personalized description getting into the nitty gritty pros and cons for different types of users.
6. Workplace and travel
Getting comfortable at work is mostly about maxing out environmental modifications, and finding products that will work for you on-the-go. Some ideas to get you started:
- Check humidity levels at home and office. Use a humidifier if needed. OSHA recommends that humidity at your office not be lower than 20%.
- Check for vents that may need to be redirected. Moving indoor air is hard on dry eye, just like wind outdoors.
- Wear moisture chamber glasses while using a computer, especially if you have severe symptoms. If you're concerned about the aesthetics, look into the Ziena glasses series, or perhaps consider getting custom moisture chambers made.
- Adopt strategies for computer time, including lighting adjustments, justgetflux.com, visual reminders to blink more often, keeping well hydrated, and keeping your screen position low so that your aperture is smaller (less eye surface exposed means less evaporative tear less and less exposure sensation).
- If you have a lot of pain, seek out pain management strategies that don't involve constant use of drops if possible.
- Talk to human resources about accommodations in your workplace if necessary. Humidifiers are a common accommodation. If that's not an option, a small desktop humidifier might be helpful.
- If humidification, moisture chambers and computer strategies are still not enough, you may want to look into scleral lenses or PROSE.
- Get additional tips from online dry eye groups.
Travel can be intimidating for people who suffer from severe dry eye, especially because of the environmental factors: a/c and heat in cars on long drives, the notoriously super-dry air on planes, irritating fluorescent lighting in airports, dry hotel rooms, and increased time outdoors, potentially in wind, and in bright sunlight which is challenging if you're photophobic. In addition, there are practical issues - like how to do warm compresses without a microwave, how to store autologous serum drops on the go, and so on. On top of all that, there are many issues specific to PROSE and scleral lens users relative to how to manage their lenses on the go and how to get their supplies through security checks, especially internationally.
On the other hand, don't underestimate the power of travel to lift your spirits during a hard time with your eyes and even to improve your symptoms across the board. It's so common for people to say their eyes felt MUCH better while they were on vacation, even if the place they went wasn't a remarkably more humid climate. Just spending less time in climate-controlled buildings and cars will make a difference, besides the pleasure factor and everything endorphins can do for you.
The three mainstays of dry eye comfort on the road:
- DRINK UP: Stay hydrated.
- LUBE UP: Max out preventive hydration in the toughest environments.
- COVER UP: This is TOPS. Bring goggles or wraparounds on flights. For the photophobic triggered by fluorescents, wear them in the airport. Wraparounds (e.g. 7Eye AirShields, which have the best, deepest foam cups of all the types with removable foam) are essential for windproofing as well as protecting light-sensitive eyes outdoors.
- Compresses: In-flight, a wet washcloth in a ziplock baggy can be helpful to give your eyes some relief without having to get to the lavatory. If you don't have access to a microwave, and if you're one of the many for whom hot washcloths just don't cut it, self-activating compresses like Eye Eco's Thermoeyes Beads may be handiest as they can be heated in hot water.
- Travel with scleral lens supplies: TSA has medical exemptions for everything you need for your sclerals, just make sure to follow the rules. If you are nervous about the risk of not having your supplies in the event your luggage gets misdirected, make sure to take several days' worth in your carry-on.
- International travel: Don't forget that TSA rules only apply in the US! If you are traveling internationally and need to take your scleral lens supplies with you, be aware that you may have problems getting through security on outbound flights originating somewhere other than the US. Put things in checked luggage, or if you're going to be gone quite awhile, consider shipping what you need ahead of you or finding out what substitutes you might be able to purchase locally.
I think that most people who experience severe depression triggered by their dry eye situation are caught completely off guard. There are all kinds of factors that conspire to cause this, as I mentioned before. The very term "dry eye" is so trivializing that it sounds completely improbable that it could affect people's lives so profoundly. Yet it does. Many people experience suicidal ideation for the first time as a result of their eye pain.
For many people that I've talked to over the years, this has actually been their first experience with severe depression, and it's a severe shock to their system. They may barely even recognize it as such. Keep in mind that we all experience depression differently. I think of depression as the whole persons's natural response to severe stress - at every level, body, mind, emotions, spirit. Some are affected more in their thoughts, some more in their emotions, some more physically. (For example, I know that I personally have experienced depression, but I also know I've never matched any symptom list I've ever read while I was experiencing it.)
I have just a few brief pieces of advice about depression:
- Keep in mind that depression is a normal part of the eye experience you're having. Depression is NOT an indication that you are not coping well. Depression is simply your body telling you that this experience really is exceedingly stressful.
- Get and stay connected with people who can relate to your dry eye experience.
- Get help specifically for depression, whatever form that help needs to take. Depression doesn't just make you miserable generally. Depression will make your pain worse, and depression will interfere with good decision making about dry eye treatments, making the whole thing a vicious circle. Do the smart thing - recognize depression, call it by its name and make it a priority to get help.
8. Anxiety: Are you stuck in this cycle?
Continued dry eye pain and discomfort, coupled with uncertainties, unanswered questions and worry about the future, often produce a level of anxiety that can lead to poor decisions and inconsistencies in how you manage the condition.
In my experience it's really helpful to be aware of your anxiety and how it's affecting you, and to be aware of the features of your dry eye experience that cause your anxiety to spike. It's easier to plan and head things off. Anxiety is so crippling when you have a condition with pain or a chronic condition - anxiety can make pain itself worse, and it definitely interferes with good decision making. It can also seriously interfere with your ability to benefit from good medical advice.
I'm going to talk a bit about one of the most common traps I see people falling into that I think can result from anxiety and can cause more anxiety.
The trap I'm referring to is where absolutely everything is driven by immediate comfort. In that world, all new treatments get judged by whether they make you feel better, worse or no change. Obviously, you need to feel better and that is the point! But dry eye disease develops slowly over long periods, and reversing it takes time too. It's entirely possible that you could be on the right track - for example, inflammation may be decreasing or your meibomian gland function may be improving - but that progress may only show up in a clinical exam, not in how you feel today. You won't know unless you try to be methodical. When trying news treatments, "bookend" them with exams before and after a period on the new treatment, so you can find out what the treatment is actually doing to your tear film or your eyelids.
Here are some examples of common patterns that happen to people who have a lot of corneal pain, and ideas for how to avoid them:
- Trying every drop known to man, and when none solves your problem, deciding you've "tried everything and nothing works".
- Here's some alternatives: Explore the wide world of non drop treatments. But first, you're going to want to read my article Dry Eye 101 and learn why drops aren't the be-all and end-all anyway. And consider asking yourself what it means if a drop or a treatment "works". What does "it works" mean to you?
- Giving up on a treatment in between doctor visits because it was uncomfortable or didn't seem to be helping.
- Here's some alternatives: Ask more questions in your appointments, like "Will the drops sting? Is there any way to prevent that?" "How quickly do you expect this to start to help? If it doesn't should I continue to use it anyway or call you?" Find out other patients' experiences on social media, how long things take to start helping and the practical strategies they found to make treatment more comfortable.
- The kitchen sink mentality: Churning through one treatment after another without really sticking it out long enough for your doctor to ever properly evaluate whether something is going right.
- Here's some alternatives: Find better comfort measures (dry eye glasses? cold compresses? less computer time?) that do not interfere with medical treatments, and max them out while you're trying a new treatment, so that you are able to give it more time. Make sure you get evaluated when you have been on a new treatment continuously for awhile.
- Using too much stuff at once. It makes it impossible to know what's helping.
- Possible alternatives: Like I said before - focus on finding the most effective comfort measures, then try to keep treatment changes to a minimum.
- Doctor-hopping in search of relief. If your doctor is not sufficiently qualified in dry eye, you may need to move on. But switching around too much has its drawbacks too. You may get what seems to be contradictory information from each doctor, and while they will each have their unique insights, it becomes very stressful trying to put it all together and make sense of it. The anxiety factor increases and it becomes harder to decide what to do or who to continue to see.
- Here's an alternative you might want to consider for eye doctor appointments: Be intentional about your appointments. Take a brief list of specific questions, but make sure you talk about your goals, specific, practical goals, and how your eye doctor can help you achieve those goals.
That's all for the moment. Please remember, if you're in that hard place with your eyes, it gets better. It may take hard work, but it does get better. Please always feel free to reach out to us here at the Dry Eye Zone for information and to get connected to others for support.