I shared my Story of Hope back in May 2016, and am happy to report that today my eyes are still comfortable. Since then, I’ve learned to avoid the triggers that make my eyes feel worse. I now know what to do each day to keep my eyes comfortable and moist. And I also had another meibomian gland probing.
“My hope and my faith in the healing process is renewed.” Diana Adelman’s Story of Hope, Part 2
This is regimen I follow daily.
In the morning when I get up I use a solution containing hypochlorous acid — Avenova lid cleanser prescribed by a local ophthalmologist, or Heyedrate — on both eyes. I squirt the solution two or three times on a cotton pad, wipe it on my eye lids, and leave it on.
Then I irrigate my eyes with sterile saline, squirting half a tube in each eye. After irrigating I take a shower and make sure my lids are really clean.
Next, I use a drop of Restasis in each eye, capping the tiny tube for the next use until it’s empty. Ten minutes later I put a Pataday drop in each eye. At noon I use Restasis again.
In the evening I repeat the steps, and add steaming with a facial steamer for three minutes.
After steaming, I clean my lids with the hypochlorous solution, irrigate with sterile saline, and apply Restasis. Plus, I take another shower.
The day ends with moisture chamber goggles. I sleep in them, then wash and dry them carefully each morning.
It may sound like a lot of steps, but it’s completely worth it to me, because my eyes feel just fine practically all the time.
Doctors and Life Style Changes
I’ve changed my diet, avoiding coffee and sugar while eating more fish, vegetables, and organics when possible. Lots of doctors recommend these changes to their patients. To me, it just makes sense to eat healthier.
Diana Adelman’s Story of Hope, Part 2
I see a local eye doctor at least once a year for general eye health. And at least once I year I see the specialist in Florida who first diagnosed and treated all of my Dry Eye conditions.
At my annual visits the specialist administers a variety of tests: Schirmer tests, meibomian gland exams, tear break-up time, eye pressure, and sometimes a meibography to see if my meibomian glands are changing. Then, depending on what he finds, he may adjust my treatment plan.
About once a year I have meibomian gland probing, which keeps the glands open and functioning. By the time the one year period rolls around my eyes are usually a little less comfortable than usual. They might be getting a bit gritty or sometimes have foreign body sensations. After probing these symptoms go away and my eyes feel great. After each probing my glands have stayed open longer and produced more oil. Meibographies have even shown that my glands are getting longer, which I think is remarkable.
To some it may seem like a long way to travel just to see a doctor (I live in Seattle and he’s in Florida), but I feel it’s an important step to make sure my eyes stay comfortable. In time, these visits may become even less frequent, but for now I’m sticking with once a year. Each time I go, my hope and my faith in the process of healing is renewed.
I hope sharing the steps I take to make my eyes comfortable inspires you to learn how to take care of your eyes. And I also hope to see you at the Dry Eye retreat this November 9-11, in Williston, Florida. Registration will be opening soon, but space will be limited so please register early. See you in November!
Diana Adelman Executive Director, Not A Dry Eye Foundation
Remember when you were first diagnosed with blepharitis or MGD and heard about meibomian glands? Who knew secreting oil into your eyes was so important. Who knew the glands that did it could become so sick?
Meiboimian Glands: A Picture is Worth a Thousand Words
Remember when you tried to say the word meibomian the first time? It probably didn’t come out quite right. Miyoban. Miboan. Mayobeen.
Hint: It’s My, as in my house. Bow, as in bow tie. Me, as in me and you. An, as in an apple. My-Bow-Me-An, with an emphasis on Bow.
Eventually you tried different treatments, from warm compresses to lid wipes to any number of in-office procedures. If you were lucky you learned about meibomian gland probing and had it done by someone trained to do it right. Finally, your meibomian glands were working and meibum, the oil they secrete, was lubricating your eyes.
You may have had to undergo surgeries — like AMT — or continue other treatments – like lubricating drops and warm compresses — and may have wondered, was probing worth it? If you still had to do all of those other things, why would you have to have your glands probed too?
Meibomian Glands After Probing
We could take time explaining it, but a picture is worth a thousand words. This month, the picture is on the cover of the British Journal of Ophthalmology and shows a series of meibomian glands before and after probing.
British Journal of Ophthalmology 2018 vol. 102
Meibomian glands before and after probing. British Journal of Ophthalmology v102, 2018.
The pictures show that after probing meibomian glands were longer. Longer means they produce more oil. More oil means more lubrication and a longer tear breakup time. In other words, longer means more comfort and more relief.
Most people report feeling better after probing, but without visible proof of its effectiveness it might be hard to understand exactly how probing helps. These photos show just one of the surprising ways probing improves eye comfort.
You probably didn’t know about meibomian glands until you got Dry Eye, but at least now you know about the simple procedure that can make them regrow.
As 2017 comes to a close, we’re taking a moment to recall one of its saddest moments, remember some of its highlights, and share what’s already in the works for 2018.
We Mourned
We mourned the tragic death of the young woman in India who simply couldn’t find help soon enough for the pain in her eyes. There is no way to express our grief adequately and nothing that will ever make what happened ok. Simply put, we mourned, deeply.
If you’re contemplating suicide, please contact your local suicide prevention hotline immediately. Reach out. There is help out there for each and every one of us.
New Board Member
“Hope was with me then, securely tucked in my back pocket. And it’s still with me now.” Susan Howell’s Story of Hope
This year Susan Howell volunteered more blogs and personal tips for coping with Dry Eye. We were impressed by Susan’s openness, willingness to contribute, and her boundless energy. She stands as a beacon of hope for many of us, having suffered through the pain of Dry Eye coupled with depression.
Despite these seemingly insurmountable conditions, Susan remained steadfast in her pursuit of relief. We were delighted when Susan agreed to join the board. She will be instrumental in organizing the 2018 Dry Eye Retreat.
270K Page Views
As 2017 Comes to a Close…
Our website had over 270,000 page views this year, averaging around 750 a day. That volume of traffic indicates that thousands and thousands of people are searching for information on Dry Eye. We hope the information on our website helps them find the relief they’re seeking.
Planning the 2018 Dry Eye Retreat
Cedar Lakes Woods and Gardens in Williston, FL.
This summer we started planning our first Dry Eye Retreat and are now finalizing its details. We hope you’ll join us for what promises to be a heartfelt and deeply moving event.
If you subscribe to our blog you’ll be notified when online registration opens. Space is limited. So if you plan to attend, please register — and book your hotel room — early.
(Please note, as of September 5, 2018, this event has been cancelled. We apologize for any inconvenience).
Thank You Bloggers
“I found what I thought I had lost forever, hope.” Susie Brockman’s Story of Hope
Thank you to all of our bloggers who contributed 19 different stories, opinions, updates, and various musings this year.
If you have Dry Eye and would like to share your personal Story of Hope with our readers, send an email to blogger@notadryeye.org. We’d love to hear from you, as would our readers.
Giving Patients a Voice
When DEWS II released its voluminous publication on the state of Dry Eye, we decided to resend the “manifesto” sent in 2016 to all of the DEWS II Committee members. Thank you Kristen for making Constant Contact work for us. Dry Eye patients everywhere deserve to be heard!
Here’s what’s on deck for 2018
Dry Eye Retreat
Two Hawk Hammock, Williston, FL
The Dry Eye Retreat will be held in Williston, FL, November 9-11, 2018. You will need to arrange your own transportation and accommodations, so please plan to book hotel rooms early. Williston isn’t too far from Gainesville, Fl., the home of the University of Florida Gators. If there’s a home game that weekend, hotel rooms will book up early. And we’d hate it if you missed the event just because you can’t find a place to stay.
(Please note, as of September 5, 2018, this event has been cancelled. We apologize for any inconvenience).
Seeking Volunteers
If you’d like to volunteer, we’d love your help. We’re looking for people who have experience or interest in social media, traditional and on-line marketing, SEO, event management, print media, fundraising, leading patient support groups, writing/blogging, public speaking, and more. To volunteer, just send an email to contact@notadryeye.org and let us know how you’d like to help.
Patient Reported Outcomes
We’re looking into ways to facilitate gathering information from Dry Eye patients who undergo treatments and the outcomes of those treatments. Are they effective? Do they cause side effects? How effective are they? And how bad are the side effects? This initiative started over a decade ago at the FDA and may one day benefit Dry Eye patients, especially those who try treatment after treatment after treatment but find no relief.
We’ll share more about this exciting development that could have a tremendous impact on each of us, though by no means is this something that will happen overnight. This as a long-term project that could have long-term effects. So stay tuned.
Happy New Year!
That’s all for 2017. We’ll be in touch again in 2018.
We heard from many of you after the last blog when we compared Dry Eye to having a 125-foot orange in your mouth. We guessed that nobody would tell you a sip of water would help wash it down.
That got us thinking. Could there be other things you’d never hear again if you had a 125-foot orange in your mouth?
Absolutely!
10 Things You’d Never Hear Again if You Had a 125-foot Orange in Your Mouth
In fact, it took literally no time to come up with more – 10 things you’d never hear again from your families, your friends, and your doctors if you had a 125-foot orange in your mouth.
Here they are, in no particular order.
1. At least you don’t have cancer
The word “cancer” really gets everyone going. Yes, in lots of cases it’s a horrible disease that can be fatal. But there are lots of different kinds of cancer, and some are very treatable. Regardless, can you imagine anyone saying “at least you don’t have cancer” if they saw you walking down the street with a 125-foot orange in your mouth? We couldn’t either.
2. You’ll learn to live with it
We can’t joke around about this when we know people who have committed suicide because of the pain in the eyes. Others become disabled, unable to work, unable to perform simple daily tasks. So no, some of us will never “learn to live with it.” And like some cancers, Dry Eye can cause death.
Charlie Brown Balloon measures just 53′ x 31′ x 46′
But that orange, no one is ever going to say you’ll learn to live with something that big in your mouth. Heck, the Charlie Brown balloon in the Macy’s Thanksgiving Day Parade is just 53 feet long, 31 feet wide, and 46 feet tall.
Your orange is way bigger than that.
3. It’s all in your head
No-o-o-o-o-o-o, it’s not all in our heads. It’s all in our eyes.
And in the case of the 125-foot orange, it’s all in our mouths. Enough said!
4. But your face looks good
As if the only time your eyes might feel bad is when they’re red or swollen or something other than clear and bright. Macular degeneration anyone? But with a 125-foot orange in your mouth we’re pretty sure there’s going to be some distortion to your face and nobody’s going to think your face looks good. Nobody.
5. You can’t possibly have a 125-pound orange in your mouth
The worst thing is when nobody believes what you’re feeling in your eyes.
But the orange – there it is – all 125 juicy feet. Now, doc, please DO SOMETHING!
6. I don’t know what it is so I’ll call it neuropathy
Neuropathy seems to be the new catchall “disease” diagnosed by a variety of specialists these days. Ocular neuropathy is extremely rare, yet there’s a trend these days to attribute chronic Dry Eye symptoms to neuropathy. But is it neuropathy or is it, in fact, a case of inadequate diagnosis or misdiagnosis? Because in the eyes – with that high concentration of nerves – something exceedingly small that can’t be easily detected – can still feel significant.
But, if you had a 125-foot orange in your mouth, chances are the doctor wouldn’t call it neuropathy. Instead, he’d say something useful like, “Your problem is that you have a 125-foot orange in your mouth.”
7. I don’t see anything in there
The next word out of the doctor’s mouth will be “neuropathy.” (See number 6 above). But there really is an underlying issue here.
Let’s first take a short quiz.
10 Things You’d Never Hear Again if You Had a 125-Foot Orange in Your Mouth
Question: What are the three most important things in real estate?
Answer: Location, location, location, in that order.
Question: What are the three most important things in engineering?
Answer: Drainage, drainage, drainage, in that order.
Question: What are the three most important things in medicine?
Answer: Diagnosis, diagnosis, diagnosis, in that order.
Unsurprisingly, that 125-foot orange makes diagnosis real easy.
8. Your tests results are all negative
See number 7 above.
Signs (exam and test results) and symptoms (what you feel) often don’t coincide for Dry Eye patients.
But that 125-foot orange probably wouldn’t even warrant any medical tests. It’s just that obvious.
9. You might have symptoms, but there are no signs of disease
Really doctor? Maybe you need to sharpen your diagnostic skills, because Dry Eye patients can feel extreme pain and discomfort, even when there are no signs of disease.
But who could miss a 125-foot orange in anyone’s mouth. That’s unmistakable, although it would be pretty shocking.
10. Don’t they have drops for that?
No, they don’t have drops for what many of us have. And they don’t have drops, or prescribe drinks of water, to get 125-foot oranges out of people’s mouths either.
So next time someone says something to you about how good your eyes look, or that what you’re feeling is all in your head, or that you’re lucky you don’t have cancer, or whatever other nonsense you here all the time, you might try telling them about the 125-foot orange. Maybe it will change their mind.
Are you a patient Dry Eye Patient? In two words, probably not. In fact, you’re probably impatient and frustrated.
Are you a patient Dry Eye patient?
You’re sick of well-meaning people saying “just use some eye drops.” You’re tired of thinking about your eyes. You can’t believe how much money you’ve spent on them. You’re confused about the conflicting advice you get from doctors. When you let yourself look back at the life you once led, you wonder if you’ll ever get any of it back.
Take heart, you will.
If you’re patient, chances are – with the help of your doctor(s) – you will eventually figure out what’s going on and what needs to be done about it.
But it takes perseverance and patience. And that’s just not something most Dry Eye patients have. Who would when it feels like there’s a knife, or a log, or a boulder lodged in their eye?
The 125-Foot Orange
Remember the first time you woke up in the morning feeling like there was a knife in your eye? Did you panic? Did you want something done about it NOW!?!?!?
Sure you did. Here’s why. The eye has 300 – 600 times more nerves than any other part of the body. So something that’s small, like an eyelash, can feel 600 times bigger.
Let’s put that in perspective.
A 125-foot orange in your mouth!
An average orange is about 2.5 inches in diameter. If it were 600 times bigger it would be 125 feet in diameter. That’s an enormous difference. You’d notice if you had a 125-foot orange in your mouth! And you’d probably want somebody to take it out RIGHT AWAY!
All of your friends would notice too, and nobody would suggest sipping a little water to make it go down easier. They’d be right there by your side, calling 911, pulling out their juicers, and FREAKING OUT!
The Impatient Dry Eye Patient
When panic sets in we become irrational. Our thinking becomes clouded. We lose patience and get angry, lashing out at our doctors, at our friends, our families, and even at other Dry Eye patients. We thrash around as if we’re drowning. But the thrashing just makes things worse.
We don’t believe our doctors. How can we when they tell us different things? We wonder if we’ve been diagnosed properly. Will the treatment be effective? Will we ever, ever get on with life?
It’s an ongoing battle. Actually, it’s more like a war.
On Your Way to Healing
Like with any war, you need to know your enemy and its allies (all of the co-morbidities that complicate things), inside and out. How they behave. How they respond. What they’re going to do next.
Then there’s treatment. Remember that patience and steadfastness are on your side, even when it feels like there’s a log in your eye.
That’s when it’s especially helpful to stop, breathe, reflect, and remember that you’re on your way to healing. And healing, like all good things, takes time.
4 Reasons Why Treating Dry Eye is Like Baking a Cake
It may have started with some dryness or or feeling like there’s something in your eye. You’d seen countless commercials for eye drops that promised to help. When you got to the drug store you were overwhelmed. Who knew there were so many different drops? And the price, especially for the preservative-free versions, probably gave you sticker shock. So you opted for drops that didn’t seem too expensive, even if the bottle turned out to be ant-sized.
At first maybe your eyes felt better. But then, after a while, they felt worse. Pain. Burning. Redness. More pain. More burning. Feeling like someone plunged a knife in your eye, or worse. There can be worse?!?!?!?
What the heck was going on? You tried researching online, but reading was becoming more and more painful.
Finally, you saw a doctor, maybe an optometrist. Maybe an ophthalmologist. Maybe even more than one.
Maybe after a while you felt better. If you did, you were lucky. The treatments worked. You could get on with life.
But maybe you didn’t feel better. Why? Because treating Dry Eye is a lot like baking a cake. Here are four reasons why.
REASON #1 – Lots of Recipes
They all have some kind of flour and some kind of sugar, but there are literally countless recipes for cake. Chocolate. Vanilla. Strawberry shortcake. Angel food. Devil’s food. Cupcakes anyone? Boston creme pie. It’s not really pie, is it? What about frosting or drizzle? Is one tier ever really enough? Bundt. Pound. Pineapple upside down cake. Pineapple upside down CUPcake. Now we’re talking! What about a flourless chocolate cake?
There’s literally the same endless variety with Dry Eye. Each and every one of us is pretty much the same. We’re all human. We all have DNA. But at the same time we’re all completely and utterly unique. So if your doctor is treating you as if you were a statistic, or exactly like the patient who came before you, you might not feel better. It’s one of the most frustrating things about Dry Eye. But don’t despair. Just like with baking a cake, eventually you’ll figure out which recipe for treatment is right for you.
REASON #2 – You Really Do Need a Recipe
You could try throwing some flour and sugar into a bowl, adding some butter, maybe some eggs. Mix them up. Pour into a cake pan and put it in the oven. But at what temperature and for how long? If you take this approach – without a recipe – chances are your cake will turn out yucky. On the other hand – start with a recipe – and you’ll improve your chances of ending up with something luscious that might even be beautiful.
One of the things Dry Eye sufferers sometimes try is the shot gun approach. They throw any and every treatment at their eyes in the hopes that something will work. Maybe some will. Others won’t. The danger with this is approach is that some conditions could go undiagnosed and untreated. And if something helps, it’s anyone’s guess what does and what doesn’t. So you won’t know which treatment to stop or which one to keep doing.
Maybe you do need lubricating drops, warm compresses, lip wipes and Restasis. But maybe you need more. With a good and comprehensive diagnosis, just like with a good cake recipe, you’ll find out what specific conditions you have. Your treatments will target them and you’ll have a much better chance of a good outcome.
REASON #3 – The Better the Ingredients the Better the Results
Even if you have a good recipe your cake will only be as good as the ingredients its made of. If you use rancid butter or rotten eggs your cake will be horrible. But baked with good quality butter, fresh eggs, and other quality ingredients, your cake stands a good chance of being scrumptious.
It’s the same with Dry Eye. If you’re using lubricating drops regularly, avoid the ones with preservatives. If you apply warm compresses, only let the cleanest materials touch your eyes. And wash your hands. Don’t touch your eyes for any reason unless you’ve just washed your hands. Rest your eyes often and get a good night’s sleep. In other words, do everything you can to give your eyes a chance to feel better.
And then don’t stop doing it!
REASON #4 – The Better the Baker, The Better the Cake
Yes, just about anyone can make a cake from a mix that’s moist and delicious. But if you want something truly spectacular you’ll turn to an experienced baker who really knows her craft.
4 Reasons Why Treating Dry Eye is Like Baking a Cake
It’s the same with doctors. Most can treat mild forms of Dry Eye. But if your symptoms just aren’t going away, you may need to look for a Dry Eye specialist, typically an ophthalmologist who specializes in Cornea and External Diseases. These doctors will usually have the most training and the largest set of tools (just like professional bakers in professional kitchens), to treat all of the various co-morbidities contributing to your symptoms.
Whatever you do, whichever recipe you choose, don’t give up. There are lots and lots of cake recipes out there and lots and lots of treatments for your condition. That means there’s always hope!
If you’re a Restasis user, you’ll want to watch the Allergan and Imprimis battle.
Before we look into that, you’ll be happy to learn Imprimis announced it will soon offer a lower-cost alternative.
Watching Allergan and Imprimis Battle Over Restasis.
Allergan released a multi-dose version of Restasis a few months ago. But it charged the same high price as the single-dose vial version.
Patients have been storing what was left in the vials for later use. By squeezing out a few more drops from those single-use vials they could save some money. But a multi-dose version could end that practice, improving Restasis sales.
But what’s good for Allergan’s bottom line still left patients with hundreds of dollars a month in out-of-pocket expenses.
Allergan and Imprimis Battle
Enter Imprimis, a California-based compounding pharmacy.
Imprimis announced on October 19, 2017 that it will fill initial prescriptions of a generic version of Restasis (cyclosporine) for just 99 cents. Refills will start at $79 a month. Cyclosporine, an immunosuppressant, is the active ingredient in Restasis.
Imprimis’ is even working on a spin-off. Surface Pharmaceuticals will seek FDA approval for drugs for Dry Eye, blepharitis and other ocular surface diseases.
But the announcement prompted Allergan to file a lawsuit against Imprimis citing patent protection.
Congress Takes Notice
The patent protection saga is in itself noteworthy. Allergan transferred the Restasis patent to the Saint Regis Mohawk tribe, a Native American tribe in upstate New York. This move would quash any patent challenges filed by competing drugmakers. By default, that would extend patent protection.
According to Bloomberg.com:
The pact, which will entitle the upstate New York tribe to a one-time $13.75 million payment and $15 million a year in royalties, could open up a new way for drugmakers to head off challenges to patents backing billions of dollars a year in sales.
Technology companies have used similar moves in the past.
Getting the Congressional Attention
However, Allergan’s move didn’t go unnoticed. This one even got the attention of Congress. On October 3, 2017 members of the House Committee on Oversight and Government Reform sent a letter to Allergan’s CEO Brent Saunders. The letter reads:
The sovereign status of Native American tribes adds time and complexity to contesting the status of the patents in question, because tribes may be immune from the legal claims generic drug makers use to challenge patents and bring less costly drugs to market more quickly.
The implications of Allergan’s patent transfer raise questions for Congress as the exchange may impair competition across the pharmaceutical industry and ultimately dissuade companies from pursuing less-costly generic alternatives to brand drugs.
The letter goes on to ask Allergan for detailed documentation regarding the transfer of the patent. The deadline for submitting the information was October 17.
Allergan’s battles with Congress started a day earlier. On October 2, Sen. Clair McCaskill (D-Missouri) wrote to the Pharmaceutical Research and Manufacturers of America, asking the group to investigate if Allergan’s action with the tribe was “consistent with the mission” of the trade organization.
I ask that PhRMA review whether actions to block patent challenges through claims of tribal sovereign immunity align with PhRMA efforts to promote innovation and discourage predatory pricing practices and anticompetitive conduct.
A few days later she introduce legislation to do away with the sovereign immunity defense when challenges are made to the validity of U.S. patents before the U.S. Patent and Trademark Office.
But Does It Work?
The widely-advertised treatment for Dry Eye has had issues from the start. For example, in clinical trials it was only effective in about 10-15% of patients. According to the product information sheet distributed with each prescription:
RESTASIS demonstrated statistically significant increases in Schirmer wetting of 10 mm versus vehicle at six months in patients whose tear production was presumed to be suppressed due to ocular inflammation. This effect was seen in approximately 15% of RESTASIS ophthalmic emulsion-treated patients versus approximately 5% of vehicle-treated patients.
So if you do the math, Restasis helped about 10-15% of trial participants. Even so, it reached the FDA efficacy threshold of 10%.
Since it’s prescribed to lots of Dry Eye patients, it’s no wonder Allergan is protecting its patent. Who wouldn’t if they stood to lose some $1.5 billion in revenue, the amount Restasis brought in last year.
References
Congress probes Allergan’s patent deal with Native American tribe Helio Ocular Surgery News
October 6, 2017
View the full report
Imprimis to offer low-cost alternative to Restasis
October 19, 2017 Helio Ocular Surgery News View the full report
Letter to Brenton L. Saunders
Committee on Oversight and Government Reform, United Stated House of Representatives
October 3, 2017
View the full report
A Native American tribe, a drugmaker and an unusual patent plan
C Koons, S. Decker Bloomberg.com
September 8, 2017
If you’re a patient wondering why your Dry Eye symptoms aren’t getting better, you might ask yourself these three questions.
1. Are you describing your symptoms accurately?
Dry Eye Symptoms Aren’t Getting Better? Ask These 3 Questions.
There’s not much a doctor can do for you if all you say is your left eye doesn’t feel good. Your doctor will have to ask more questions before she knows what’s really going on. But if you’re specific from the start about what you’re feeling, e.g.: my left eye burns all over and I see bubbles in the tear film, your doctor might still have to ask a few questions (and even examine you), but at least you’ll be one step closer to an accurate diagnosis.
It helps the doctor if you’re clear, concise, and descriptive. Take a few moments, focus on what you’re eyes are feeling, and find the words that accurately describe your symptoms.
Plus, be sure to tell your doctor right away if you experience a new symptom. Let her know if treatment isn’t giving you the expected relief. You doctor can’t help you if she doesn’t know what’s going on.
2. Is your doctor really listening to you?
As long as you’re very clear about your symptoms and reporting them in a timely manner, your doctor should listen and not be dismissive. Your doctor probably knows something you don’t. But a doctor who doesn’t really listen to what you’re saying, or a doctor who’s rude or dismissive, just might not be the right one for you.
Sometimes it’s not just doctors who don’t listen. Sometimes it’s the organizations that represents doctors. We came across this last year when we reached out to the Tear Film and Ocular Surface Society (TFOS). As a patient organization we had hoped to provide the patient perspective to the upcoming Dry Eye Workshop II. Unfortunately, the organization’s leadership declined our participation. So instead we wrote a letter.
We sent the letter to the over 100 DEWS II participants. None of the participants wrote back. (So much for welcoming patient input). Maybe they’re just not aware of the importance of patient participation in healthcare. Here’s an example. The National Academy of Medicine (NAM), will be holding a meeting on July 17, 2017, in Washington D.C. to improve diagnosis in health care. One break-out group focusing on Patient-Centered Health Care, Education and Policy to Improve Diagnosis, will be asked these questions:
How can patient advocates improve the emphasis on patient-centered policies related to diagnosis in clinician practices, hospitals, and within the larger policy arena?
How can patient involvement in the diagnostic process be encouraged at all levels, including in the creation and implementation of policy, in addition to clinician-patient interactions?
Are you/Is your organization considering opportunities to better involve patients and families in promoting and improving patient-centeredness in diagnosis?
These are just a few sample questions, but do you notice the focus on patient input and patient participation?
Needless to say, we’re looking forward to reviewing the DEWS II reports when they come out later this year. We may even write them another letter.
3. Could it be the drops you’re using?
You’ve probably heard the saying, the treatment is worse than the disease. It’s true for eye treatments too.
It’s possible to develop allergies, or sensitivities, to the medicine that’s supposed to make you feel better. Preservatives and other compounds in drops and ointments can cause irritation. So if your symptoms persist, and you’re using a drop or ointment, or any other topical treatment, let your doctor know. Ask if the medicine could be the cause. Your doctor might suggest a different medication or tell you to stop the one you’re using altogether.
There are countless reasons why Dry Eye patients suffer with chronic symptoms or why new symptoms crop up. Asking yourself these three questions can help you embark on your journey to healing faster.
Please note, the Dry Eye blog will be on vacation for the rest of the summer. Be sure to subscribe to our blog to hear from us as soon as we get back.
Reference
Improving Diagnosis in Health Care: Implementation Workshop
Quality Chasm Series
Briefing Book
July 17, 2017 The National Academy of Sciences
Lecture Room
2101 Constitution Avenue NW
Washington D.C. 20418
Living with Dry Eye isn’t easy. Eventually you figure out what you can do to avoid additional pain, but it can take a lot of trial and error. I hope my 50 tips for living with Dry Eye will help you avoid, or manage, the pain of Dry Eye.
14. Remember to blink. Put a Post-it note on your computer, or download an app to remind you.
15. Limit computer and electronic device use as much as possible.
Light Sensitivity
16. Wear wrap-around sunglasses. (I like Fitovers). I wear two pairs of regular sunglasses on bad days. Or sometimes I put the disposable glasses I get at the optometrist’s office inside my regular sunglasses for added protection from the bright sunlight.
17. Ask your ophthalmologist to approve extra dark tinted windows for your car if you are light sensitive.
Filaments
18. Wear bandage contact lenses when your eyes are burning or you have filaments. The lenses reduce pain when air hits the cornea. These lenses have been a lifesaver for me, especially on bad days. I get a prescription for Biotrue ONEday disposable lenses by Bausch & Lomb. They don’t come in Plano (no prescription), so I get the -0.25 prescription lens. You may need to work with your optometrist and try several brands to see what is most comfortable for you. Wear the bandage lenses only when you’re having filaments, or when the burning sensation is intense, because long-term contact lens use can also cause dryness.
Sleeping
19. Use nighttime gel at night in the corners of both eyes, or inside the lower lids. (I like Systane Nighttime Ointment). Be sure to reapply during the night if you wake up for any reason.
20. If you sleep with your eyes even partially open, wear an eye mask or moisture chamber goggles. The parts of the eyes that are exposed to air dry out while you’re sleeping and you wake up in pain, with burning eyes. A mask can help to keep your lids completely closed (but not always), and moisture chamber goggles keep the moisture in.
Clearing Debris
21. Flush your eyes with sterile saline several times a day. Flushing clears out any irritating particles. Sterile saline is safe and preservative-free, available OTC or with a prescription. Just don’t use it so much that you dry out your eyes and make things worse. Use an emergency eyewash station only short-term if sterile saline is not available.
Nutrition and Supplements
22. Take fish oil supplements to increase Omega-3 consumption. (I use the Thera Tears brand). It takes a while to see any improvement, but it does help.
23. Reduce sugar intake. It feeds inflammation
24. Reduce caffeine intake. It dehydrates you and alters meibum production.
26. Find an ophthalmologist who specializes in Dry Eye, not one who just prescribes eye drops. (Ophthalmologists are MD’s who can diagnose and treat more complicated conditions and perform surgery if you need it). Find an optometrist who will work with you on glasses, or fit you for bandage, or wet, contact lenses.
27. It’s important to treat underlying causes of Dry Eye and any other systemic conditions to prevent further damage to your eyes. Find doctors who know your conditions and are willing to take the time to listen to what you’re going through.
Air Quality and Humidity
28. Use humidifiers in the bedroom and office to put moisture in the air. Many environments are dry, and offices keep the air dry because of copier paper curling. If possible, keep humidity levels around 40% . Mold can grow if there’s too much moisture in the air,
29. Use an air purifier in the bedroom to reduce dust and pet dander.
30. Try keeping pets out of the bedroom. I know this one is hard for some, but it helped me.
31. Avoid dusty and moldy places like basements, attics, and storage facilities.
Fumes and Smoke
32. Avoid smoke. The smoke from fires, fire pits, bonfires, cigarettes, and fireplaces can be very irritating. Check which way the wind is blowing if you’re going to watch fireworks.
33. Ask for help with housework so chemicals and irritants, and their fumes, don’t get in your eyes.
34. If hiring a maid isn’t an option, try wearing onion glasses (available at Bed Bath & Beyond or Williams Sonoma) whenever you clean or are around irritants. Even natural cleaning products, like white vinegar, can be irritating to the eyes.
OTC/At Home Treatments
35. Use warm and cold compresses — warm for MGD to open the glands and keep the meibum flowing, and cold to relieve pain.
36. Use cold compresses on the eyes as a last resort because they lower the temperature of the meibum and make it harder to flow.
37. Keep OTC drops and bandage lenses with you at all times.
39. Use lid scrubs for crusts on your lids and lashes. (I like the Systane lid wipes which are individually packaged and great for travel).
Pain and Medications
40. Take Vicodin for extreme pain. It can dry out your eyes more, but gets you over the hump.
Susie Brockman’s 50 Tips for Living with Dry Eye
41. Review your medication list and avoid pain relievers, hormones, anti-depressants and all meds that cause dryness. Talk to your physician about substitutions.
42. Take Pilocarpine 3-4 times a day to increase tear production.
43. Ask for lots of gel in the eyes when having surgery to reduce further drying.
Life-Style
44. There will be some days when you’re just not able to drive. Always have a backup driver on deck for those unexpected bad days.
45. Wash your hands often. Dry Eye sufferers tend to touch their eyes frequently to clear away debris, instill drops, blot, or a host of other reasons. Hands need to be impeccably clean to avoid contamination or getting anything in the eye. Just washing with warm soap and water, and drying thoroughly, is usually enough to remove dirt and microorganisms that can cause infection. (OcuSoft makes a special hand soap for contact lens wearers that I like).
46. Surround yourself with positive people who will lift you up, and not tear you down, so you don’t spiral into depression. You need a strong support group!
47. Try to reduce stress and avoid stressful situations. If you have Dry Eye from an autoimmune disease it will always flare up when you are under stress.
48. Don’t wear eye makeup or try serum that boosts lashes. Makeup can flake and get into your eyes and glands, and cause more discomfort
