Finding a dry eye doctor
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July 31, 2020 episode
Hosts
Rebecca Petris moderated the discussions
Aidan Moore managed production and technical support
Panelists
Our panelists were asked to introduce themselves by sharing where they live, what they’re drinking, how long they’ve had dry eye and why, where they are in their journey, and what drops they used most recently.
AMY joined us from New Mexico with a nice cold beer. She has had dry eye ever since the week she moved to the southwest in 2004 from the more moist environment she grew up in. Her big issue is nocturnal lagophthalmos, and her symptoms are under good enough control at this point, as long as companies don’t change the ointment formulations! She uses TheraTears throughout the day and OcuNox ointment at night, resulting in “Crisco face”.
JUDY lives in Halifax, Nova Scotia and is drinking water. It’s been five years since her dry eye diagnosis. She has aqueous deficient and lipid deficient dry eye, without an identified cause other than classic risk factors (age, female, contact lens history, antihistamine use) Judy describes it as under pretty good control now, though she gets blepharitis flare-ups. and describes herself good-humoredly as being in the acceptance stage of grieving. Judy most recently used Systane gel, which, along with any other drops she happens to be using, she habitually tucks in her bra for the security of knowing they are always available when she needs them.
ROB joined us from Long Island City (western Queens) in New York and was drinking water and brandishing a bottle of cod liver oil. Rob’s dry eye journey with meibomian gland disease began 14-15 years ago and about 6 months after refractive (vision correction) surgery. The dry eye problem was initially obscured by some complex vision problems also caused by the surgery. He describes his condition as very well managed now with his routines and medical care from a meibomian gland specialist.
Highlights
Question 1: How long did it take for you to find a doctor who seemed to understand and could offer some help - after dry eye first became a real problem for you?
JUDY: About two years, depending how you look at it.
Judy’s pathway to get help was driven by the vision problems it was causing her before anyone knew that it was due to dry eye. She describes how she actually started getting help at the exact same time as she (finally) got diagnosed - but she had struggled greatly with her vision for at least two years prior to that. She recalled a time when she was using preserved eyedrops as frequently as every hour, at her doctor’s encouragement. Interestingly, the doctor who diagnosed her severe aqueous deficient dry eye was a LASIK surgeon to whom Judy had been sent for assessment due to her vision problems. Until she saw the surgeon, no one knew why she couldn’t focus or why she couldn’t get a reliable glasses prescription. But once the diagnosis came, her optometrist was able to immediately start helping, both personally with prescribing and by referring her to an ophthalmologist. Over time, Judy says, she created a team of professionals including one who fashioned custom moisture chambers for her. At one point during a relapse, her GP tasked her with finding a doctor herself, and she did: an optometrist she currently sees and describes as “fabulous”.
ROB: “Four miserable years of flying all over the United States and Europe” before he had a key breakthrough.
About six months after the seventh refractive surgery (many of which were to repair previous damages), dry eye set in, which Rob describes as terrifying. He had a very demanding, fulfilling job involving a lot of computer work, which became much harder to do, and ultimately he had to take some time away from work. Living in New York, of course, meant proximity to a great many specialists, and he initially followed friends’ referrals to LASIK doctors. He tried many things, from plugs to cauterisation of all four ducts to lacriserts. Over the years, he traveled to have IPL, as well as probing (which he feels was, in his case, a mistake).
Rob explained how ten years ago, lipid deficient dry eye (where the problem was not enough oil, rather than not enough tears) really was not thought about or talked about much, even though more recent studies have shown this is the most common type of dry eye, and it was many years before he understood he didn’t have a tear problem, he had an evaporation problem. After a referral by his NY optometrist to an out of town specialist, Rob learned that his meibomian glands were producing, not healthy oil, but what looked like yellow toothpaste - infected meibum, in fact, which was creating inflammation in his lids. At that point he began a process of regularly “cleaning out the glands”. Rob likens his gland care to dental care. Within two years, he returned to work happily and successfully. Rob also uses scleral lenses from Boston Sight which enable him to do long work assignments. Rob describes things as “real good” now, thanks to his team of doctors. He describes being very careful to loop them all in to what’s going on because of the challenges of having multiple doctors treating the same condition.
Amy: Four years - yet in the end, it was not a doctor who solved the problem at all. It was her husband.
Amy feels her problem, nocturnal lagophthalmos (sleeping with eyes open) is simpler than what many people have. Yet, she was not able to get a correct diagnosis for years. Meantime, the severity of symptoms consumed years of her life: having to stay home rather than go out, having to just lie down with her eyes closed for the day. In retrospect, she feels it is distressing that key information (e.g. the climate and altitude - as her symptoms started immediately after moving) was available that could have solved the issue. But it was 2004 with fewer resources. She was a student, and seeing a university eye doctor who, she assumed, would have all of the answers. At 20, never having had a medical problem, she assumed doctors had answers.
Her doctor diagnosed blepharitis and prescribed a variety eyedrops (difficult for a cash strapped grad student). Nothing helped. She was then put on oral antibiotic tetracycline. She feels her doctor was basically throwing darts at a board, and trying extreme things - when her problem was actually quite simple.
Finally, during a train ride on her honeymoon, her husband observed that she was sleeping her her eyes partly open. (“Creepy!”) She does not recall her doctor ever mentioning such a possibility, though they talked about things like cauterizing her ducts. They never said, “You have nocturnal lagophthalmos and this is what you need to do at night.” Amy has seen other doctors over the years, and sometimes they have suggestions, but ultimately she manages the condition with ointment and drops. Refresh PM was the only one that worked - then it went out of production for a couple of years and when it came back it had a different consistency. Now she uses Ocunox, which she feels works 80% as well as the original Refresh PM.
QUESTION 2: How have your expectations of eye doctors changed through your experiences of dry eye?
Judy:
Nobody had real answers for her. It was a long, long time into it before someone said to her, “Well, you have lagophthalmos” as if she should already have known! She feels her realistic expectation of doctors is that most of them can’t help us in the way we want. She feels we need each other, we need to be our own self-advocates. She feels it’s very important to keep bringing information to her doctors and saying “What about this?” She does not expect them to know everything. What she expects them to do is to take her seriously when she has a complaint - to look further, to get more information for her.
Amy:
“The naivete of her youth” has long since passed. She described a time when an optometrist offered plugs, and specifically collagen plugs as a test for whether permanent plugs would be helpful. She asked if there were any risks, and he said no. It was a Friday when he put in collagen plugs. Over the weekend she felt like she wanted to claw her eyes out. As she learned, a fair number of people (1-3%) are allergic to bovine collagen and she had to have an emergency doctor flush them.
QUESTION 3: What advice do you give your younger self - what advice do you give someone who is, now, where you were?
Rob:
If Rob could have done this ONE thing differently… he feels he could have saved himself from many years of wrong directions. When you’re in pain, he feels, you make dumb decisions - you make poorly informed decisions - all you’re thinking is, how can I stop this? THIS [moisture chamber glasses], he feels, would have stopped the skid enough that he might have thought of having a few glands (not all 90) probed on his first visit. Keep it simple! These things (holding a pair of 7Eye Airshields), he feels, if he had just put them on, and not cared what he looked like (he had a job in media and necessarily cared about presentation) he would have been happier. It look a long time to get past that.
Amy:
Amy’s answer is just realizing that your first eye doctor may not have all the answers. She advises that you seek out community, which didn’t exist back when this happened to her, but does now! Don’t just show up at a doctor and expect that they will be able to help you. Take ownership of the problem. Amy has learned this through other physical conditions over the years as well. You have to take initiative. She also feels doctors sometimes go straight to complex solutions first rather than simple solutions.
Judy:
Judy advises against using antihistamines “for life”, like she did for a couple of decades at length. She feels she would not want to be on any treatment for too long now before actively re-assessing it. Judy also suggests looking at low tech solutions, not just high tech, such as moisture goggles. She went through a lot of panic attacks, and a lot of issues, such as so much humidification in the bedroom that her walls were wet. She suggests finding low tech solutions that buy you some time. She recommends sticking with a treatment for a reasonable amount of time, to give it a chance - but also not sticking with just one treatment without looking for other things. “When this doesn’t work, I’m gonna try this.”
Question from Rob: Would you rather talk to a patient, or a doctor?
Rebecca:
We need each other to navigate the world of dry eye. We’ve got to have the doctors, but they can’t necessarily put this in context for us. We’re the ones living with it.
Judy:
I want to say, the other patients. But I really need both.... I don’t care who you talk to, you have to think of it with a little bit of distance. But having other people is amazing! When I think of the nuances, it came from patients - who had the experience.
Amy:
I think both as well. The community provides the caring, and the understanding of what we’re going through. The medical community provides the tools - two different things.
Rob:
I always felt there was a better assessment of my feelings from other patients, than from a doctor.
Quotable Quotes
Keep looking… Keep a lot of balls in the air. Don’t just trust one thing. But stay with them long enough to see if they’re gonna work.
- Judy
Your first eye doctor may not have all the answers.
- Amy
If I in 2006 I had just put on a pair of moisture chamber glasses… I would have been a much happier, well adjusted person.
- Rob
The pain and anxiety will cause us to churn through one thing after another. It’s very difficult to be methodical when you hurt.
- Rebecca
I made so many situations worse because of being in pain… being impetuous and not thinking through things. If you’re pushy, your doctors will do what you ask them to do. I caused myself the worst harm by insisting that all four ducts be sealed up.
- Rob
I asked if there were any risks associated with [temporary collagen plugs], and he said no…. I learned that a fair number of people are allergic to bovine collagen.
- Amy
As a minimum, we have to have [a doctor] who is ENGAGED.
- Rebecca
What I expect [eye doctors] to do, is to take me seriously.
- Judy
I don’t want to have to keep pushing this wet noodle up a hill! I want HELP! … I want them to work as a team! I don’t want it to just be one person. I’m not beating up doctors - I’m just saying, we have to be realistic. We have to push. We have to ask. ...We don’t have to know everything, but we have to say, “This is my problem, I want you to find a solution for me.”
- Judy
Madison Avenue doctors: “Look, I can’t have someone like you in this chair for more than 15 minutes.” My first meeting with my current doctor? I was in his chair for two and a half hours. Which just doesn’t happen.
- Rob
He had a list of all the things we could do, each of which would probably move the meter… an inch.
- Rob
“Dry eye is a terrible phrase. It’s very lightweight. It doesn’t do justice to any of the pain that many patients feel.”
- Rob
I don’t walk around thinking about my eyes every day, like I did for two solid years… Not a minute went by that I wasn’t thinking about my eyes.
- Rob
We don’t know why it happens. I’ve never seen it reversed. Your job is to keep your corneas moist.
- One of Judy’s doctors
People sometimes said, “What doctors have you seen?” And I’d say, “All of them.”
- Rob
We all kind of helped each other.
- Judy, of herself and her eye doctors
I went to my optometrist and said, “Look. If I was your mother, what would you do for me? Because I can’t keep going with the vision problem, and these drops aren’t fixing it.”
- Judy
Vision problems did not terrify me to the core of my being… Dry eye… was terrifying… because that made my life very small, very quickly.
- Rob
I can cure a party really fast by saying, “Would you like to hear about the components that make up your tear film?”
- Rob
No two people have the same map for what gets them through the day. There is no single roadmap.
- Rob
Take ownership of the problem. You have to take the initiative.
- Amy