You will not win, Dry Eye!
Like many of you, I am sure, I had monumental aspirations. I was going to be the first female professional baseball player (my 8-year-old self), an environmental lobbyist or Governor (my law school student self) or start my own business (myself yesterday and today). I was strong-willed, dedicated and determined. I still am. However, for the last 21 years of my life (since I was 19 - I am now 40), my strength, drive and willpower has been significantly depleted through use towards something else than my career aspirations: finding a way to make each day comfortable and relatively pain free.
Not only do I suffer from severe chronic dry eye (my Schirmer’s Test measures 2 mm of tear production in the left eye and 4 mm in the right - as you all know, more than 10 mm is considered normal tear production), but I also have chronic migraines. Both of these conditions have left me using all of my resilience to maintain appearances of being a relatively happy and normal human being every day, with two debilitating conditions that are invisible to each person I meet. These two diagnoses have significantly impacted my social life, my ability to stay awake through a whole movie or chapter of a book, and to get up early in the morning (I never want to open my eyes), among other things. I am here to focus on my dry eye story, not my migraine story - although I do believe the two are related and caused by some yet unidentified underlying condition, that story is for another time.
During the spring semester of my sophomore year in college my contacts began feeling like paper just minutes after putting them in. I doused my eyes with eye drops, then simply used saline as eye drops were too expensive, then removed my contacts regularly, rewet them and put them back in. I finally gave in to wearing my hideous glasses. For someone fairly vain at that point in my life, this alone was devastating (the last 21 years have been an evolution to accepting my natural self through the inability to tolerate nearly all facial lotion/creams, skin treatments or makeup). That summer I planned to live at my family’s cabin in Northern Wisconsin where I had a job cleaning hotel rooms during the day and waitressing at a fine dining restaurant in the evenings. I found an optometrist to see in the Northwoods who told me I had a condition called dry eyes. I thought, I’m 19, how can I have this condition? Only older people have that. He told me I should use eye drops and that should make me comfortable. Over the years I have tried every eye drop out there. I have found a few that I think help my version of dry eye best including Refresh Plus, Refresh Celluvisc, Systane Gel, Restasis and Xiidra. Yes, I use them all EVERY DAY!
Upon returning to college I spent much of my junior year seeing an ophthalmologist at the University and researching various medical conditions that caused dry eye. I saw a rheumatologist who ruled out Sjogren’s Syndrome. My ophthalmologist used a laser to try to permanently seal my drainage ducts. My friend’s dad is an ophthalmologist and had me try lacrisert (which I despised and did not feel provided a natural lubrication feel at all, but more gummy and annoying lubrication). He also put plugs in 2 of my 4 drainage ducts that weren’t closing properly through laser cautery. I was able to maintain a relatively comfortable existence with these methods in place (eye drops, plugs, cautery and warm compresses) over the next few years. Oh, one thing about compresses and baby shampoo. Baby shampoo was the recommendation of one of the doctors. My experience with baby shampoo is that it was HORRIBLE and caused significant irritation of my eyes. So, I have done warm compresses for 10 minutes morning and night - for nearly the past 21 years (more about this later).
At this time, I was in my early to mid-20’s and figuring out my next life-steps. I moved to Boston for a job and decided to go back to school for my master’s degree in Environmental policy studies. I then stayed on for my law degree. Law requires A LOT of reading and writing, but also gave me a distraction. Even though I was using my eyes a lot, I was so busy, incredibly inspired and excited about what the future might hold for my career that I didn’t have as much time to think about the misery. I just got through the day. During this time, I saw a specialist in Boston who noticed that I didn’t blink properly, but really didn’t give me any tools to try to remedy that. He also did meibomian gland expression. I drove down to Boston from Vermont once per month, if possible, to have this expression done. It caused a lot of irritation in my eyes, but I thought - he is an expert, this must be what I need. He also explained that many dry eyes are caused by these glands not functioning properly and that is also why I should do the warm compresses.
A few years after graduating law school and moving back home I found a corneal specialist with some dry eye experience that I started seeing. A few years after I started seeing her I noticed that my eyes were suddenly feeling much worse. That is when she did another Schirmer’s test and found my tear production was now only at 2 mm (left eye) and 4 mm (right eye). That news, along with significant struggles happening outside of my control in my personal relationships) caused me to go into a deep depression. One that had me request the ability to work from home for the entire month of November that year. Luckily, I had incredibly kind and understanding supervisors who trusted my work ethic to let me work from home for the month.
This Schirmer’s Test was the tipping point that led to my emotional spiral. My Dr. had determined that MGD was not really something I needed to be concerned about (recently confirmed by the Lipiview test, which shows that my meibomian glands are actually quite healthy). I feel lucky that I do not suffer from significant MGD, but as mentioned earlier I also fail to blink properly, which Lipiview also confirmed (it is very weird, but also awesome, to see the pics of your eyes this test produces!). This is important because blinking causes the oil layer to properly spread across your eyes and maintain any actual tears your eyes do produce. In addition, my work requires me to stare at a computer ALL DAY LONG. Technology has made it such that we are constantly on devices, which make us blink less as it is. Add to that not blinking completely and, well, I have to do blinking exercises several times a day. (No, this doesn’t count towards the at least 30 minutes a day of physical activity it is recommended we get to stay healthy). The Schirmer’s Test results and lack of evidence of MGD made me realize treatments for MGD would really not be beneficial to me and helped explain why those I have tried throughout the years have not really provided a difference in my eye comfort level or tear production. If I could get back the amount of time I needlessly spent doing warm compresses over the last 21 years, well, I haven’t done the math, but I have a feeling that would add up to a lot of time I could have spent doing other things. In fact, since the Lipiview test, I have only used a warm compress in the morning to remove the gunk (yes, a very technical term) that accumulates on my eyelids due to application of a nighttime gel, and I haven’t noticed any change in comfort (or should I say discomfort) level in my eyes. I also spent several years taking Omega 3 in high doses (which has just been proven ineffective in dry eye treatment - and was also a technique targeted more towards those with MGD).
My point is that I had to limit my treatment options to those that focus on aqueous deficient dry eyes. At this point in my life, I had done a TON of reading about dry eye. In fact, the former Dry Eye Zone blog was a lifesaver to me during this time of deep depression (thanks Rebecca!). It allowed me to realize that others are facing similar trials and tribulations and it allowed me to learn about techniques other people were trying to treat their dry eyes that my doctor may not have made me aware were available. For example, it was here I realized how beneficial moisture goggles could be. As an avid outdoors-woman (in that I love to bike, hike, canoe, kayak, ski, etc.), these activities had become cumbersome because the wind made my eye discomfort intolerable. I had wrap around goggles, but the difference that moisture goggles have made on my life has been huge. The caveat is that they are pricey, due to the need for prescription lenses. I wear the Wiley-X Gravity with facial cavity seal almost all day long while I read on the computer at work and when I am outside. They make the day bearable. This blog additionally introduced me to nighttime dry eye protection, which I now use EVERY night, so I can sleep with a fan on now (YAY!) Blood-work to test for allergies, other inflammatory diseases and again, Sjogren’s Syndrome all proved negative. And, I read a lot of medical research papers on different options for treatment of dry eyes during this time. I did not see anything very promising in the near future for the aqueous deficient dry eye treatment pipeline. Until I read an article about what is now called True Tears. I thought True Tears was going to be the be-all and end-all. And it gave me hope. Hope is important in managing the daily anxiety I have struggled with for MANY years due to my dry eye. I tried to enroll in their testing prior to FDA approval, but lived too far away from the test sites. I finally found a dr. participating in the True Tears initial rollout phase near the Twin Cities and paid out of pocket to see him and have the device prescribed. I have now been using True Tears since February 2018 and can say that I like it. It’s awesome that it helps produce a “normal” tear and not a reflex tear, but for someone regularly surrounded by people, it isn’t the most convenient to use multiple times during the dayl—plus, when I use it a lot, I have nosebleed in one nostril—so, it’s not the be-all and end-all. But, it does provide another option, and the ability to move away from having to spend so much money on eye drops.
Spring and summer, times of the year we Wisconsinites CRAVE, have become more and more irritating for my eyes. Although I have tested negative for a plethora of allergies, my inner left eye itches regularly and I have migraines daily this time of the year and only Claritin (which itself can be drying to the eye) helps. So, I choose Claritin over the itch and migraines.
My eye doctor has never suggested scleral lenses for me, but in all the reading I have done, I have been led to believe this could provide comfort to someone with my condition. The Twin Cities doc agrees and so I found a doctor in my network who works with scleral lenses. They have been ordered and I have my appointment tomorrow, actually, to learn how to put them in and see if they fit properly. However, my insurance has denied paying for these lenses. I am currently appealing that denial. I still have fight left in me!
Scleral lenses are the next step in the search for dry eye relief and comfort that has become my life...and many of yours. Here’s to hoping this one is the answer and not giving up hope!