OSDI 78 -> 25 in about a year: what worked and what didn't

This will be a long post. I posted it on https://dryeyediscourse.substack.com/ as well-- check it out there if you want more bite-size pieces.

Summary

Caucasian Male in my 20s in the USA with MGD, ocular rosacea, and mild blepharitis. No obvious cause. Started with severe MGD and mild blepharitis, developed ocular rosacea later. Went through a lot of pain and tried a lot of treatments. Got my symptoms to a livable level mainly through Lipiflow, IPL, and lifestyle changes.

I have had severe acne, which I think is genetic. I "cured" the acne by switching to an anti-inflammatory diet-- no dairy, low sugar, low omega-6s-- but if I go back to eating that stuff my acne comes back too. I've been a serious computer/phone user since I was young and that's definitely contributed.

I don't know how "typical" my dry eye is, but I've seen 5 different doctors, and done a lot of research into it, including reading medical papers. I feel like my dry eye is probably as "cured" as it ever will be. It's still a big step down in quality of life, but I've adapted mentally, and I'm still glad to be alive. But it's been a difficult journey and I have a lot of opinions about dry eye treatment. I hope this post helps you, and if it does, please reply below and let me know. You can also email me at "ded" DASH "anteloper" AT protonmail dot com

Contents

A. What I Wish I Knew When I Was Diagnosed

Includes my main advice for other people dealing with the same kind of dry eye I have. I've tried to focus on fresh stuff that I think is missing from the usual resources and recommendations on dry eye online.

B. My Story

You don't need to read this if you're just looking for data or recommendations, but sometimes it can be emotionally helpful to hear that others have also struggled with dry eye.

C. What Worked and What Didn't

All the treatments I tried, ranked from most to least helpful

A. What I Wish I Knew When I Was Diagnosed

If you're totally new to dry eye, make sure you understand the fundamentals of the disease before reading this. I've tried not to repeat the standard advice here since... you've probably already heard/read it a bunch of times. That said:

Make sure you have an idea (or a hypothesis) about what subtype of dry eye you have. There are many different kinds of dry eye, "dry eye" is just a collection of symptoms, not a diagnosis, and the right treatment depends heavily on the underlying causes for your individual case. This post is about evaporative dry eye. MGD, blepharitis, and ocular rosacea because that's what I have.

For the medical science behind this type of dry eye, I highly recommend checking out this paper: https://bjo.bmj.com/content/100/3/300 -- in particular the infographic at https://bjo.bmj.com/content/bjophtha...0/F1.large.jpg

1. Warm compresses may cause ocular rosacea

I have no other data to back this up, but for me, I think doing warm compresses (Bruder mask) 2x a day for months may have caused or contributed to my ocular rosacea. Heating increases blood flow and for me I think some of that turned into permanent growth of blood vessels in and around my eyelids. Be careful not to over-do warm compresses, and take good photos of your eyelids every month or so to record their appearance. If your eye doctor hasn't heard of ocular rosacea or doesn't know how to diagnose it, find a new doctor.

2. For patients like me, warm compresses aren't a substitute for Lipiflow

One of my biggest dry eye regrets is not getting Lipiflow sooner. I have a lot to say about this that would be better as a separate post. But, in short, due to $$$$ incentives and TearScience's marketing, lots of people get pushed to do Lipiflow even if they are poor candidates. For most people, Lipiflow takes some time to work and can temporarily make symptoms worse right after the treatment. End result: many patient reports online that "Lipiflow didn't work". I wish I had never read these, and I wish I hadn't said “no” to Lipiflow after I was first diagnosed.

It turns out that, at least for me, there is no substitute for Lipiflow. I did warm compresses and Miboflo for many months before my 1st Lipiflow. I did not truly experience relief from MGD until after doing Lipiflow. I believe the studies comparing Lipiflow to warm compresses have misled doctors into thinking that Lipiflow is "equivalent" to compresses if you do them long enough. Maybe this true for some patients, but it hasn't been for me.

This study: https://escholarship.org/uc/item/4tx7h1x3 shows that you’re more likely to have good results from Lipiflow if you have the hypersecretory subtype of MGD, and/or are male or relatively young. If this is you, I recommend scraping together the $$$ and getting it done ASAP. Don’t be like me and wait.

3. With the right doctor, IPL is safe, and it's most effective when done directly on the eyelids (with metal corneal eyeshields)

If you have or think you have ocular rosacea, find a clinic that does IPL on the eyelids (and the face) with metal corneal eyeshields. I've had it done without the eyelids/eyeshields and it didn't work as well. You may be able to judge this yourself based on the level of telangiectasia (tiny blood vessels) in the white part of your eyeballs and on your eyelids.

The right kind of eyeshields slip under your eyelids and rest directly against your eyeballs. It can be uncomfortable getting them in and out but IPL feels a lot safer with this kind of eye protection. Call the clinic and ask.

I was apprehensive about IPL because it seemed like an extreme treatment at first. IPL is safe when done correctly, but there are probably sketchy clinics that do it in an unsafe way. Ask questions and do your research. I've had it done a bunch of times. The effect of each treatment is small but they really add up.

4. 30% of dry eye suffering is mental

Few if any eye doctors will help you with the mental component. The Facebook groups and this forum show a warped picture of the disease because the people who get better leave, and many of the people who do post are in acute distress. Be careful, and try to avoid reading anything online if you're feeling really bad. You just have to keep going, keep trying new things, journal about your symptoms, and adjust your expectations for life. Forum posts are just anecdotes, not data, so take them with heaping pinches of salt. There were many times where I felt things were hopeless. I was wrong about that and I'm grateful I didn't give up.

Set aside a block of time at the same time every day to think about your eyes and whether you should adjust your treatment plan. And when that time is up, don’t ruminate on your eyes.

Dealing with the mental component of dry eye is half the battle. It's really important to acknowledge this, pay attention to your mood, and notice when you're feeling down. It's much harder to deal with the physical symptoms if you're not in a good place mentally.

Mindfulness, including meditation, and "eye yoga" have been a huge help to me. I discovered I could relax the muscles in and around my eyelids, and this actually reduced my pain a lot! No doctor I've seen has mentioned anything like this, and I think it's hugely overlooked. I'm considering writing a separate post about this; please let me know below if you're interested.

5. There is a huge difference in quality between dry eye doctors

Lots of doctors claim to treat dry eye but don't really understand the disease. I've been seen at 5 different clinics at this point, and I truly believe that 4 of those deliver care that's just not good enough. I wasted time getting treated by the wrong doctors, and I wish I'd tried more clinics when I was first diagnosed.

Haven't been to an academic medical center but in my experience, the optometrists I've seen know and treat dry eye better than the ophthalmologists. YMMV, just don't assume that ophthalmologists know more because they have an MD. Most of the training to become an MD has little relevance to dry eye.

6. Information sharing in medicine, including in dry eye, is poor.

Doctors don't seem to talk to each other, and I've talked to doctors with contradicting views on causes and treatments. Pharma and industry-sponsored studies are often biased, and the industry spends $$$$ on marketing to influence what data your doctor sees. Question what you read online and what your doctor says. If your doctor sees a biased sample of dry eye patients (e.g. only LASIK patients, or only older patients), their treatment approach might not be ideal for you.

It pains me to say this during covid because most Americans should listen to their doctors *more*-- (f*** the covid skeptics, anti-maskers and anti-vaxxers) but in the end, your dry eye is unique and you'll need to experiment to find what works for you. This is a long process and you just have to put the time in.

7. Dry eye treatment is really expensive and managing financial stress is a crucial part of fighting the disease

Simply put: if you are stressed about paying for treatment, you will make worse decisions about your life and your healthcare. I know this from personal experience.

I don't think there is enough discussion about the financial costs of dry eye treatment, and the stresses of paying them. And providers are rarely sympathetic to this. I wish I had good news here. Unfortunately, dry eye is a progressive disease, it will get worse if you don't treat it, and many of the effective treatments are expensive. Your best hope is to do whatever you can to organize your life around fighting this disease, including cutting costs wherever you can to help pay for treatment. This can be especially hard because dry eye makes it hard to work, and quitting your job, if you can, may actually be best for your long-term health and finances. I really felt the financial anxiety, so my heart goes out to you. In particular, I put off Lipiflow because I felt the price was unreasonable. It's especially sh**ty in the USA because health insurance is tied to work, and Medicaid doesn't cover Lipiflow or IPL. If you feel trapped, I understand, cause I've been there. Don't give up. You have to take the chance that things might get better, even though it's scary to drop thousands of dollars on treatments that cannot guarantee results. I wish I could give more help or advice here but this really comes down to your individual financial situation.

Also: a lot of people who get dry eye are older folks with savings or office workers with higher incomes, but not all dry eye patients are like this. Don't let eye clinics push you into paying for tests or products you don't need.

B. My Story

CW: depression

First time I had dry eye symptoms was about 3 months before I got diagnosed. I was hiking somewhere windy and my eyes were painful and photosensitive. I checked the mirror later and remember seeing obviously clogged meibomian glands but I had no idea what they were (I had never heard of dry eye) at the time so I didn't do anything. My symptoms went away in days and I just assumed I had "healed" and forgot about it.

Two months later I started having foreign body sensation while working on the computer. I assumed it was due to dust and/or bad ventilation in the building and did my best to ignore it. I'd always been healthy (or so I thought), so why spend hundreds of dollars just for a doctor to tell me nothing's wrong?

About a week before my diagnosis, I went somewhere cold and dry, was reading on my phone a lot, and that's when the symptoms really started. It was pretty sudden, severe, and debilitating. I had all the typical symptoms of dry eye, as well as eyelid spasms, and intermittent stabbing pains near the center of my cornea, like someone was jamming a pin into my eye.

When I got back I used my insurance's website to find an optometrist. She basically just looked at my eyes, told me I had dry eye, gave me eye drops (with preservatives!) and told me to do eye drops and warm compresses. So unhelpful.

After that I saw an ophthalmologist at an eye care center. Dry eye was listed as one of her specialties. She gave me a more thorough diagnosis (including mild blepharitis) and recommended Lipiflow, warm compresses, eye drops, blinking exercises, and fish oil. I had read about Lipiflow online but balked when she told me the price. I had never really had medical bills so it suddenly seemed crazy to drop $1000 on a treatment that wasn't guaranteed to help. I left feeling discouraged and really lost.

Around this time I quit my job. Quitting was the right choice to protect my eyes, but wow, on top of the pain, quitting really hurt my mental health. There were some days I couldn't get out of bed because the mental toll was so bad. I lost my work insurance and had to find a new plan on the ACA marketplace. I felt abandoned by society and the healthcare system, and I felt like my life had become worthless. I was afraid I'd never get hired again so I tried to hide things from my co-workers. I thought about suicide a lot.

My routine at this point was basically just Bruder mask 2x a day, fish oil, manual expression by rolling a q-tip on my eyelids, and trying to avoid anything that made my symptoms worse. My mental health challenges literally made me stupid and irrational. Part of me had given up on life, and on looking for solutions. From reading forums like these I had concluded that Lipiflow was a scam. My symptoms were gradually getting a bit better, but it was excruciatingly slow, and my quality of life hadn't improved much. I lost a couple months in this pit of despair.

Eventually I found a LASIK doc who started treating dry eye after some of his LASIK patients got it. He told me that he used to do Lipiflow but found it ineffective and switched to Miboflo. He was wrong about Lipiflow/Miboflo for me, but I have to thank this guy, he was extremely compassionate and it helped so much just to have a single doctor acknowledge the pain, I'm tearing up a bit just remembering. He was also open to considering the effects of diet and recommended a good eyelid cleanser for my blepharitis, also did meibography to confirm that my gland loss was relatively minimal. I did Miboflo at his clinic, and it helped somewhat, but my quality of life was still pretty poor at this point, and I was still not working, and could hardly imagine ever dating again.

Thankfully I had recovered enough to realize that my personal indignation against TearScience's pricing wasn't worth giving up a chance at salvaging my life, and I decided to try Lipiflow. It's hard to describe how I felt after the procedure. I had no side effects once the anaesthetic wore off. The day after, my eyes felt so good I wanted to run into the street and jump for joy. I felt my life had been saved, but I also felt dissociated from my body. It was unreal, and I didn't dare hope that my eyes would stay that way. Would it last? And what did it mean that my life had been saved by a treatment I'd spent the previous months hating?

Fast-forward a couple months. I started working again. My symptoms did get worse but I don't think work caused it. I had asked my ophthalmologist about IPL before and she basically knew nothing about it, or ocular rosacea (red flag!). IPL was the big treatment I hadn't tried, and so, buoyed by my success with Lipiflow, I decided to find a new clinic and give it a shot. Their optometrist diagnosed me with ocular rosacea (better late than never), and I started treatment. The first time I got IPL I was so scared the provider laughed at me (f*** them!). I basically had PTSD from the months of pain I'd been through. For me, IPL is not an immediate win-- it actually makes my symptoms slightly worse for about a week afterwards-- but the cumulative effect is huge. I recommend doing it, but if your doc does manual expressions afterwards, make sure they don't push too hard; I think this can damage glands.

After another Lipiflow and my initial 4 IPL treatments, I still had symptoms, but my osmolarity tests came back "normal". My doc recommended switching to a maintenance schedule but I've continued with the treatments. I'm still seeing benefits. Unless things change, I may keep doing IPL regularly for the rest of my life. Who knows.

My dry eye still impacts my quality of life a lot. I can’t really read on my phone anymore or play video games but I can use the computer enough to work. My dry eye doesn’t stop me from doing the important things. I have no idea what will happen if my eyes get worse again, but I've learned to live with the fear and really understand that life is temporary. For me, dry eye is a reminder that if something is really important, I should go and throw all my energy into making it happen. And it helps me waste less time on TV and social media.

Things have turned out better than I ever dared hope for, but the process was a lot harder than it should have been. Preventative healthcare is basically nonexistent in the USA and I think my dry eye could have been totally prevented if I had known the signs. Lipiflow and IPL have been lifesavers for me, but I still think the standard of care for dry eye is very poor relative to how emotionally and mentally challenging this disease is.

C. What Worked and What Didn't

More helpful treatments are closer to the top of each list.

Most helpful:

IPL (on the eyelids, with metal eyeshields)
Lipiflow (so far it’s been great for 6 months, then the MDG comes back)
blinking exercises
"eye yoga" and facial massage to relax eye, eyelid, and facial muscles
meditation
exercise, sleep, stress/anxiety reduction
plant-based anti-inflammatory diet

Helpful:

Zocular Zocufoam (foaming cleanser)
Cliradex Light (foaming tea tree cleanser)
EyeEco Onyix silicone sleep mask
GENTLE manual expression at home after Blephasteam or a warm compress not more often than 1x per week. I bought a metal paddle online specifically for this, did I mention you have to be really patient and gentle?
manual debridement / exfoliation / cleaning of eyelid margin every morning with organic cotton q-tip (I kid you not, you have to get the organic cotton ones, name-brand q-tips made my eyes sting!!)
fish oil
avoiding alcohol, spicy foods, and sunlight (rosacea triggers)

Not sure if it helped:

Blephasteam. I think it’s probably better than warm compresses for most patients with mild MGD but I didn’t use it long enough to notice a persistent difference. I also didn’t start Blephasteam until after doing Lipiflow twice. Won’t work for severe MGD.
Miboflo (relieves MGD symptoms a bit, but not sure if it lasts)
Cliradex towelettes
Zocular ZocuShield gel
Avenova (used at least 1x per day for 2 weeks, hard to tell if it made a difference)
Green tea with lemon (but h/t to Hokucat for the good idea!)

Don't think it helped:

Warm compresses 1x or 2x per day (tried both Bruder mask style, and the USB powered ones). This did improve my tear film when my MGD was bad, but I don’t think it was worth it because they seem to have caused or exacerbated my ocular rosacea. I should have just gotten Lipiflow instead.
Eyedrops, including Retaine MGD. Temporary symptomatic relief that went away quickly. I dont use any eyedrops. That deserves its own post.
Overly forceful manual expression, including when done by the doctor after IPL. The expression should be gentle. If a lot of force is required then the gland is clogged and must be heated before it can be expressed.
The "bundle method" for warm compresses, maybe I have the wrong kind of towels but it really didn't work for me. It was definitely less effective than both the Bruder and USB warm compresses.
Running hot water on my eyelids in the shower

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OSDI 78 -> 25 in about a year: what worked and what didn't

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OSDI 78 -> 25 in about a year: what worked and what didn't