The Top 7 Things I Wish I Knew When I Was First Diagnosed
The most important things I've learned from my struggle with dry eye
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 $$$$ incentives and TearScience's marketing, lots of people get pushed to do Lipiflow even if they are poor candidates. Also, for most people, Lipiflow takes some time to work and can temporarily make symptoms worse right after the treatment. End result: many patient reports online that "Lipiflow didn't work". I wish I had never read these, and I wish I’d never said “no” to Lipiflow after I was first diagnosed.
It turns out that, at least for me, there is no substitue for Lipiflow. I did warm compresses and Miboflo for many months before my 1st Lipiflow. I did not truly experience relief from MGD until after doing Lipiflow. I believe the studies comparing Lipiflow to warm compresses have misled doctors into thinking that Lipiflow is "equivalent" to compresses if you do them long enough. In my experience, Lipiflow is not just a "faster warm compress" for people with money to burn.
This study: https://escholarship.org/uc/item/4tx7h1x3 shows that you’re more likely to have good results from Lipiflow if you have the hypersecretory subtype of MGD, and/or are male or relatively young. If this is you, I recommend scraping together the $$$ 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 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.
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.
4. 30% of dry eye suffering is mental
No eye doctor will help you with this. The Facebook groups and forums 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. You just have to keep going, keep trying new things, write about your symptoms, and adjust your expectations for life. Forum posts are just anecdotes, not data, so take them with heaping pinches of salt. That said, when my dry eye was at its worst, I never imagined things could improve as much for me as they have. 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 dry eye.
If there is interest, I may write a separate post about mindfulness and face/head yoga for dry eye. These have been a huge help for me.
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/device co. -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 advice but this really comes down to your individual financial situation.
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.