Getting My Life Back After 8 Years of Severe MGD and Aqueous Deficiency
One day in 2007 while driving my long commute to work, my eyes felt tired and I wanted to close them. I didn’t realize it, but this was just the beginning of my 8-year battle with severe MGD and aqueous deficiency, the last few years being the most painful and challenging of my life.
The tired eyes while driving continued over the next two years. My eyes also started bothering me while using the computer at work. In early 2009, a corneal specialist at a nearby prestigious university diagnosed me with dry eyes from blepharitis. She prescribed lid scrubs, warm compresses and massage, Restasis, fish oil supplements, and preservative-free drops 4-6 times daily. For a few months, this regimen somewhat helped.
Then I began requiring drops more often. I also developed sensitivities to sunlight, fluorescent lighting, wind, air conditioning and fans. I took constant breaks from the computer, because my eyes would tear and sting. I couldn’t wear eye make-up anymore. I tried several moisture chambers, which helped a little, but they never fit my Asian profile well. Not a day went by without questions, comments, or stares from people while wearing them.
During follow-ups with my specialist, she put in lower plugs, and added prednisolone drops, and doxycycline to my regimen. But these didn’t alleviate my symptoms. I could no longer wear contacts. For awhile glasses helped, because I could also use thicker drops; Genteal Severe Dry Eye Gel became a favorite. But now I could no longer wear moisture chambers, and getting an rx pair was impossible with my high prescription. I resorted to drugstore sunglasses that fit over my glasses. It was clumsy, heavy, and inconvenient wearing two sets of glasses. I constantly took them on and off to use drops. For sleeping I began using night goggles and Genteal Gel, but would still wake up with very dry eyes. And my discomfort was continuing to increase, despite all this. I left my specialist at the end of 2009….I had stayed too long.
In 2009 I also saw a rheumatologist, for possible Sjogren’s Syndrome. He ran tests for autoimmune and other issues. Everything was normal, except slightly low testosterone. He explained Sjogren’s can take years to appear positive. He prescribed Evoxac, an oral drug used off-label to give eyes moisture, which helped some. He said perhaps hormone therapy later, and treatment for Sjogren’s if/when other symptoms appear and tests are positive. I left feeling both relieved and worried at the same time.
Towards the end of 2009, I experienced other troubling symptoms. The skin on my body, limbs, and face became extremely dry and scaly. My lips cracked, and my mouth and throat became parched, I had difficulty swallowing, despite drinking at least a gallon of water daily. My joints and muscles felt sore, and my limbs constantly numb. I was going downhill. My rheumatologist again ran tests, but everything was still normal. However, he was 99% positive I had Sjogren’s based on my degree of dry eyes, and other symptoms in line with Sjogren’s. The initial drug prescribed was contraindicative to a retina condition I had, so he recommended chemo, used increasingly to treat autoimmune disease. Chemo’s 30% success rate for Sjogren’s was too low to justify the harmful side effects, plus I was testing negative, so I declined. But the idea of chemo and likely Sjogren’s really shook me.
Beginning 2010, I was on a mission to get better: eyes and Sjogren’s. I researched several doctors and treatments. I saw dry eye specialists, acupuncturists, and a naturopath, the thought being help relieve symptoms AND address the underlying problem. During this time, I learned I had both MGD and aqueous deficiency. I tried more steroid and antibiotic drops, temporary upper plugs (while having lower plugs), autologous serum tears, testosterone cream, scleral lenses, Lipiflow, Lacriserts, acupuncture, cupping, nasty tasting herbal teas, special diets, amino acid shots, intravenous vitamin infusions, various supplements, and more. Although most had no material or long-term impact on my eyes, there were some positives.
First, I started juicing as part of the vegetarian diet my naturopath recommended, and over time, all my non-eye symptoms went away. I think it also helped that he had me limit sugars, dairy, and gluten. Additionally, I lost weight…I reached my high school weight. Even my blood pressure, cholesterol, and triglycerides significantly improved. So the diet definitely improved my overall health, except for my eyes. It made me believe food is medicine.
Second, amino acid shots, also from my naturopath, initially provided my eyes UNBELIEVABLE temporary relief, but at ~$500 per shot. The evening after my first shot, my eyes felt so good, it seemed I had no eye problem. But it only lasted a few days, and then my eyes became severely dry again. The effects of the shots lessened over time, then stopped working. But I theorized perhaps regularly eating foods with the right amino acids would one day help.
Third, PROSE sclerals worked great for half a year. I drove to work with little discomfort. I used the computer without taking forced breaks. Environmental factors bothered me less. However, my sclerals started getting uncomfortable, like tight suction cups pulling on my eyes. I struggled with them another half year, but they kept fogging up throughout the day, requiring constant removal, cleaning, and reinserting. Every time I removed my lenses, no liquid remained in lens bowl, as if my eyes sucked it all up. My PROSE specialist noted the surface of my eyeballs were like sandpaper. I had to stop wearing sclerals, but hoped to use them again one day.
By 2012, I developed blepharospasms, where my eyes kept involuntarily shutting. I couldn’t drive to work anymore, so worked part-time from home that year. But my eyes continued their descent, where I could barely use the computer 10 minutes at a time. So I stopped working completely by the end of 2012, basically homebound. I could not be a decent mother or wife, or have anything called a life. I couldn’t drive even short distances to pick up my kids from school. I couldn’t help with their homework so they had to wait for my husband to come home, and he was already exhausted from a long day at work and doing all the cooking, cleaning, and taking care of me. I could no longer use electronic devices, read, watch television, or do any activities outside the house like going for a walk or shopping. I couldn’t even look across at anyone or anything for a few seconds without debilitating pain.
I rarely left the house over the next three years, except relying on family and friends to take me to doctor appointments, or to my parents’ house, but I even dreaded that, it was so painful. And I felt was like a freak with my blepharospasms, squinting, and drooping eyelids. People couldn’t understand the pain I was in. They meant well, but it was so frustrating when they would say “Can’t you just use some drops?”, or “Maybe you don’t drink enough water”, or “You’re not getting out enough”.
These three years were the worst of my life. I had no tear film, and it felt like it. Doctors commented I had the worst dry eyes they had ever seen, but had no more to offer. My condition had continued to get worse than imaginable; so how bad would it be five years from now, 10 years from now? I felt defeated and depressed. I constantly told my husband I couldn’t see myself continuing with this pain, and felt useless and a burden to him. He always told me just get better, so I could be with him and the kids. Well that was somewhat of a semi-guilt trip, but it did give me something to think about.
During these homebound years, I analyzed my journey. Why did initial treatments somewhat help? Why did sclerals become uncomfortable? Why did amino acid shots stop working? I wondered if over time the oil in my glands thickened to the point of no return, and now nothing worked. Sjogen’s seemed a likely cause, but working on the computer, the long commute, and even contacts seemed like contributing factors. Or maybe my glands were not blocked, just no longer secreting oil.
I had read about probing a few years ago, but back then it was quite new, and only one doctor in Florida did it. Plus it sounded very invasive. However, maybe now in 2012 it was time to try it.
The Florida doctor’s office suggested calling the probe manufacturer for leads on doctors. The manufacturer provided my husband with a list of West Coast clinics with respective dollars spent on probes. Contacting those who bought the most, we inquired how many procedures they had performed. There were not many to choose from, but we selected a doctor in a neighboring state.
The probe consult was the first time any doctor pressed on so many of my glands. He reported the oil quality and quantity: he said the few that expressed had thick Crisco-like oil. My glands and lids were not inflamed like others he treated, but he was willing to do the procedure. Probing “popped” open dozens of glands on both my top and bottom lids. He said several had scar tissue. It was very uncomfortable, but soon after, my eyes felt some moisture! The feeling lasted less than a week, then reverted to severe dryness.
Some people might consider this a failed procedure, but it showed my glands could be unblocked and somewhat function, albeit a short time. Perhaps my “Crisco” meibum quickly blocked them up again. Remembering my amino acid shots, I planned for future probing while making diet changes, to see if any foods might help my glands function better.
I started tracking changes to my diet, meds, supplements, water intake, exercise, and how my eyes felt on a daily log. I typically made additions/deletions one at a time, to pinpoint what did or didn’t work. I started reducing supplements, and eliminating Restasis, Lotemax, and doxycycline, observing no change in how my eyes felt. Although I had not found the right diet changes yet, this process simplified my regimen. I saved money, and eliminated unnecessary components and potential side effects.
I had multiple probings while homebound; another from the original doctor, the rest from a local doctor. I continued trying different diet changes, but dryness would still return in less than a week after each procedure.
Then towards mid-2015, a breakthrough! Following my last probing, after adding fresh lemon juice to my daily green tea, within a week, my eyes felt better. I could do a few things, which were impossible for the past three years, with less discomfort, like watching TV, going outside, and talking with family across the dinner table. I drank the lemon/tea for a month, with not one day of debilitating dry eyes. I discontinued it for a week, and my eyes became dry again, so am positive my body needed this. I feel the antibacterial, antibiotic, and anti-inflammatory properties of the lemon/tea eliminated bad bacteria and inflammation in my body, and helped my immune system and glands function as it should. I subsequently found research that lemon helps increase the body’s green tea antioxidant absorption to 80%, vs. 20% drinking green tea alone. Studies show these antioxidants stimulate production of immune-strengthening enzymes, among other things. I continue making diet changes that help my eyes, but none has been as significant as the lemon/tea. Continued use has helped my blepharospasms, squinting, AND droopy lids eventually go away completely.
As some stable tear film returned, I could wear my sclerals again. Probing and diet helped address the cause, and sclerals the remaining dryness I will always have from several permanently lost glands, but it’s manageable. It took so long to find what worked for me, but finally getting my life back was possible by being my own advocate, support from family and friends, and not giving up, no matter how bad things were. Everyone who sees me now says I look back to normal. I look back at the few pictures of myself during that time versus now, and what a difference!