4 Reasons Why Treating Dry Eye is Like Baking a Cake

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.

Treating Dry Eye is Like Baking a Cake

What did they prescribe?

Lubricating eye drops. Warm compresses. Lid wipes. And, talk about sticker shock, Restasis. Maybe you started taking Omega 3’s.

Come back in 6 or 8 weeks, they said.

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.

Why is this like Dry Eye? Because before you start throwing treatments at your eyes, you first need to know exactly what you’re treating. Do you have meibomian gland dysfunction? Restasis probably won’t help much. Do you have aqueous deficiency? Lid wipes, not so much. Demodex mites? Skip the serum tears. Foreign body sensation? It’s anybody’s guess.

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!


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Restasis Users Watch the Allergan and Imprimis Battle


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


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Save The Date DRY EYE RETREAT 2018

Please Note: This event has been cancelled. We apologize for any inconvenience. 

Dry Eye Retreat
November 9-11, 2018
Williston, Florida

Save the Date

We’re back from an extended summer break and excited to announce Dry Eye Retreat 2018 for anyone suffering with Dry Eye, their families, and friends.

So many of you have told us you feel alone and isolated. Together we can change that.

Meet other Dry Eye sufferers.

Share your experiences.

Participate in Support Groups.

Make a difference!

Check back often or subscribe to our blog for updates.

Cedar Lakes Woods and Gardens in Williston, FL.

Send your questions and comments to blogger@notadryeye.org.

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Dry Eye Symptoms Aren’t Getting Better? Ask These 3 Questions.


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.

Not A Dry Eye Foundation’s Letter to DEWS II

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

 


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Susie Brockman’s 50 Tips for Living with Dry Eye

Susie Brockman
Susie Brockman’s 50 Tips for Living with Dry Eye

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.

Read Susie Brockman’s amazing Story of Hope

Dry and Windy Places

1. Turn off all ceiling fans. The air movement will dry eyes out even more.

2. Turn off overheard air vents on planes as soon as you board.

3. Close air vents in cars and bedrooms.

4. Keep windows rolled up in the car.

5. When flying, use nighttime gel and drops. Drink lots of water. Lower the window shade on your row.

6. If possible, vacation in humid environments. Climates that are dry can make the eyes much, much worse.

7. Avoid windy conditions and places whenever possible e.g. make sure the vent in a restaurant isn’t going to blow on your face before you sit down.

Lighting, Computers

8. Remove half of the fluorescent bulbs in your office if you are light sensitive. Consider desk lamps for lighting.

9. Use a screen filter on your computer to minimize glare and reduce eye strain.

10. Use computer glasses (prescription strength are available through optometrists) to minimize glare and reduce eye strain.

11. Dim computer monitors and cell phone screens to minimize glare and reduce eye strain.

12. Take breaks from your computer and while reading anything.

13. Consider audio books to reduce eye strain.

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.

25. Drink Lots of water! Stay hydrated.

Doctors

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.

38. Only use preservative free eye drops.

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

49. Get plenty of rest.

50. Never give up!

Susie Brockman, Chronic Dry Eye Patient


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Product Updates

Latest Product Update

If you’re like many Dry Eye patients, you’re always on the lookout for new Dry Eye therapies, information about existing therapies, or wondering what might be on the horizon.

Here are our latest product updates. (View our advertising policy).

CyclASol®, Reduces Fluorescein Staining

According to its manufacturer, Novaliq GmbH, CyclASol, a preservative-free cyclosporine A solution, reduced corneal fluorescein staining in a phase 2 clinical trial for patients with moderate to severe Dry Eye.

Cyclosporine A is an antibiotic and the active ingredient in RESTASIS (a.k.a. IKERVIS). It’s good to hear about a preservative-free version, especially for those who might benefit from the drop, but would prefer to avoid long-term exposure to preservatives.

http://www.novaliq.com/2017/01/05/novaliq-announces-positive-topline-results-of-phase-2-clinical-trial-evaluating-cyclasol-in-adults-with-moderate-to-severe-dry-eye-disease/

Seciera™, Proprietary Cyclosporine A

Sun Pharma announced Phase 3 confirmatory clinical trial results for Seciera, another preservative-free cyclosporine A drop with a “patented, novel, proprietary nanomicellar formulation.”

http://www.sunpharma.com/media/press-releases

Klarity, Rehabilitates and Stabilizes

Imprimis announced exclusive rights to Klarity, a preservative-free, topical solution and gel containing chondroitin sulfate, for patients with Dry Eye. According to its press release, Klarity protects and rehabilitates the eye’s surface after surgery, wearing contact lenses, or in cases of moderate to severe Dry Eye. It treats edema and free radical formation associated with Dry Eye and “can serve as a cell membrane stabilizer.”

http://irdirect.net/prviewer/release/id/2426340

Cannabinoid-based Therapy (Yes, Cannabis)

Ora Inc. has been retained by AXIM Biotechnologies for product development and clinical trials on glaucoma and Dry Eye treatments using cannabinoid-based ingredients. From the sound of it, the therapy is likely focused on reducing pain or other discomfort, rather than treating any underlying cause of disease.

http://aximbiotech.com/wp-content/uploads/2017/05/AXIM_03212017_ORA-CSA-MEDIA_FINAL.pdf

Human Lubricin ECF843, Improves Dry Eye Signs

Novartis will in-license ECF843 (a human lubricin protein) worldwide (outside Europe). In a phase II study, with 28-days patients showed improved signs of Dry Eye. More testing is to be expected.

https://www.novartis.com/news/media-releases/novartis-strengthen-rd-pipeline-licensing-ecf843-ophthalmic-indications

TrueTear™ Intranasal Tear Neurostimulator

The FDA recently approved Allergan’s TrueTear hand-held tear stimulator. The device has two prongs that emit small pulses. Choose the strength level, place prongs in nostrils, and voilà, tears!

Doctors sometimes place Q-tips in nostrils to test reflexive tear production, a tear that is more caustic then normal tear film. So, could TrueTear exacerbate Dry Eye symptoms?

http://www.truetear.com/

Probing Restores Meibomian Glands

Although more studies are likely, and necessary, this one suggests meibomian glands can be restored, or regrown, with probing. That’s good news for anyone with obstructive meibomian gland dysfunction.

http://bjo.bmj.com/content/early/2017/06/06/bjophthalmol-2016-310097.full

P-321, Keeps Eyes Hydrated

Parion Sciences agreed to grant Shire “exclusive worldwide rights to develop and commercialize P-321. P-321 is “an investigational epithelial sodium channel (ENaC) inhibitor” for treating Dry Eye. P-321 may block tear absorption and keep the surface of the eye hydrated. Additional clinical studies are still required.

https://www.shire.com/en/newsroom/2017/may/o53zxn

Zerviate, for Allergies

Nicox received FDA approval for Zerviate, a topical eye drop containing the antihistamine cetirizine, for ocular itching associated with allergic conjunctivitis. Cetirizine is the active ingredient in Zyrtec. Allergic conjunctivitis can contribute to Dry Eye symptoms.

http://www.nicox.com/assets/files/ZERVIATE_FDA_Approval_20170531_EN.pdf


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Susie Brockman’s Story of Hope


My story of hope begins over 15 years ago when mucus filaments began forming on my corneas. Each time I blinked, the filaments would scratch my corneas, and my eyes would become inflamed. They became sensitive to light, and I started seeing an ophthalmologist up to three times a week.

Susie Brockman’s Story of Hope.

To give me some relief, the ophthalmologist would numb my eyes and scrape off the filaments. Sometimes the filaments would return within a few hours. It was horrible! Finally, suspecting a connective tissue disease, the ophthalmologist recommended I see a rheumatologist.

After a Gallium scan in 2002, the rheumatologist diagnosed Sjogren’s Syndrome, a systemic autoimmune disease in which white blood cells attack moisture producing glands. He prescribed Plaquenil, a drug that treats malaria and symptoms of rheumatoid arthritis. It helped some, but I continued to struggle with Dry Eye, and filaments, for years.

I didn’t know what to do. I begged my ophthalmologist to give me a bottle of numbing drops so I could get some relief at home, but that was out of the question. Numbing drops can cause harm with frequent use and are never prescribed to patients. They would damage my corneas even more. Instead, the ophthalmologist prescribed steroid drops to control the pain. After using them for a while, I developed a cataract.

Surgery Exacerbated My Symptoms

I lived in pain for years. During that time I saw countless doctors and tried everything: Restasis, punctal plugs (several times), lubricating drops, and just about every prescription drop available.  After developing painful ulcers, I was referred to a cornea specialist who suggested cauterizing my tear ducts. He in turn referred me to an oculoplastic surgeon for the procedure that seemed to help only a little. Tragically, during the procedure my cornea was scratched, which only added to my misery. I suffered with Dry Eye for another 10 years.

Susie Brockman
Susie Brockman says, “Never give up!”

Then in 2013, I was diagnosed with colon cancer, and had a right hemicolectomy.  A surgeon removed the right side of my colon and attached the small intestine to the remaining portion of the colon.  Unfortunately, one section that had to be removed, the ascending colon, puts moisture back into the body. Without this organ, and still suffering from Sjogren’s Syndrome, my Dry Eye symptoms got even worse.

My eyes became more light-sensitive, and I wasn’t able to see anything but a bright, white light when I went outdoors. Driving was out of the question. I couldn’t go grocery shopping because the lights in the stores were too bright, and my vision was blurred.  Even in church, I wore sunglasses. I removed the fluorescent lights in my office. I couldn’t sit near a window in a restaurant, or have the blinds open in any room, because the light caused pain. Even the lights of a TV were too bright, causing pain.

One time the pain was so great I went to the ER.  There was nothing they could do but give me strong pain meds. The meds helped ease my pain temporarily, but made my symptoms even worse.

Don’t Come Back

One day, the ophthalmologist I’d been seeing for 20 years told me not to come back. She couldn’t help me anymore. I left her office, got in my car, and wept. Where could I go for help? What would I do?

I searched online and found PROSE scleral lenses, a treatment for Dry Eye. I thought I’d finally found a solution for my pain. As soon as the office approved me, I was on a flight to Boston to get fitted for a pair of scleral lenses at the Boston Foundation for Sight. At $10K per pair, they had to help. I ended up spending two weeks in Boston.

With the lenses in, my eyes they felt pretty good. However, the moment I removed them, the pain was back and even more intense. The lenses were difficult to put in, and I went through nine trial sets before finding a pair that fit.  The day I was scheduled to fly home I broke one of the lenses, and had to get a replacement before leaving. I realized scleral lenses weren’t the answer for me.  Maybe for some, but definitely not for me.

Sew My Eyes Shut

As if all of that weren’t enough, while still in Boston, I began having blepharospasms. My eyes would spontaneously close and then stay tightly closed. I would have to undergo treatment with Botox injections for the spasms when I returned home to Knoxville.

Back home, I made an appointment with the oculoplastic surgeon who had cauterized my tear ducts. I explained about the blepharospasms and asked for Botox injections. He refused to do them. He said I would be in so much pain from the injections that he would have to sew my eyes shut. That didn’t sound like a viable option, at all!

I Wasn’t Ready to Give up Yet

How was I supposed to live with this? I was in constant pain. It felt as if both eyes were filled with crushed glass. My vision was extremely blurry, and opening my eyes between spasms was excruciatingly painful, so I kept my eyes closed as much as possible. I’d started walking into things. I still couldn’t drive. My boss asked me to consider going on disability because it was difficult for me to see the computer.

I became depressed. Pain medication and antidepressants made my eyes drier and exacerbated my symptoms. Social situations became difficult because I was in pain and unable to keep my eyes open. I researched Seeing Eye dogs and Braille, but they wouldn’t stop the pain. I even considered suicide, but because of my faith, I ruled it out.

This was no way to live. Squinting and in pain, I kept searching online for help, and eventually found a doctor in Florida who said he could. I was skeptical about trying another doctor, but decided to give him a chance. I wasn’t ready to give up yet.

Another Doctor

At my first visit, the doctor spent four hours with me, diagnosing a variety of conditions and putting together a treatment plan. He ran tests on my eyes that no doctor had done before.  First, he confirmed I had aqueous deficiency, then he cauterized the rest of my tear ducts to keep any tear film from draining out. For conjunctivochalasis, he recommended amniotic membrane transplants (AMT), and for meibomian gland dysfunction, meibomian gland probing.

Still skeptical, I scheduled AMT surgery for the following month, one eye at a time, about four weeks apart. The first eye went perfectly, and healed right on schedule. The second eye recovered more slowly. Unfortunately, after the second surgery, I was still unable to see in that eye. I resolved myself to a life of blindness. I would be O.K. with that, as long as the pain was gone. But the doctor wasn’t about to give up on my sight. He flooded my eyes with steroid drops, restoring vision in that eye! Later, he probed my meibomian glands. He even set up an appointment with a local plastic surgeon for Botox injections to control the blepharospasms. I could finally see again, and my eyes were much more comfortable. This new doctor had restored my hope!

Susie Brockman’s Renewed Hope

My eyes have been improving ever since.  But it’s been a process, and it’s a process that continues. I still receive Botox injections every two months for blepharospasms, even though they dry my eyes a bit. (I’m researching other treatments so I can stop the Botox injections: hypnosis in the UK; brain retraining in Canada). I currently use autologous serum drops, made from my own blood, five times a day in each eye, and I’m undergoing other treatments for meibomian gland dysfunction. I still have bad days, but I’m not in constant pain like I was before.

Plus, now I’m able to drive, though not if I develop a corneal filament, not if it’s a long distance, or if I’m having blepharospasms. My eyes are not as light-sensitive as they were, and I can see outdoors again. Most importantly, I found what I thought I had lost forever, hope. That’s why my advice for others who are suffering is never give up!

Susie Brockman, Chronic Dry Eye Patient


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Is There Such a Thing as a Bad Blinker? YES!


Many years ago, before I learned I was a bad blinker, I attended a job-related rally being covered by the local news stations. When a reporter approached and asked to interview me, I happily agreed. That evening the interview aired on the local news channel. I was excited about being on TV, that is, until I saw myself. I was blinking a lot, a whole lot.

Is There Such a Thing as a Bad Blinker? YES!

Still young and vain, I’d hoped anyone who was watching and knew me wouldn’t notice my crazy blinking. Beyond that, I didn’t give the excessive blinking too much thought, brushing it off as something having to do with my nerves. Maybe it was some kind of nervous tic, like when people wrinkle their noses or grind their teeth when they’re talking to someone.

I Was Always the One Ruining Photos

Eventually I noticed that in photographs I was always the one caught blinking, making me look like I’d had an adult beverage, or two, too many. If my eyes happened to be open, they always looked tired, making me feel self-conscious. I began avoiding cameras like the plague, unless I was wearing sunglasses or, if not those, my reading glasses.

By now you’re probably wondering why I’m going into so much detail about my bad blinking. It’s simple. Before being diagnosed with chronic Dry Eye, I took blinking for granted (except as noted above). Blinking to me was just a natural process, and while I blinked a lot, I really had no clue about the important role blinking plays in eye health.

Who Knew Anyone Could be a Bad Blinker?

Then, with the onset of Dry Eye, I would wake every day with a foreign body sensation in my eyes. It felt as if sand was imbedded in them. The feeling would cause me to blink like a maniac. My husband said my head bobbed with every blink. So with painful eyes, and a bobble head, I visited a Dry Eye specialist who sat me in front of a computer that tests blink rate. I found out I was a partial blinker, meaning when I blink my eyes don’t close completely. The condition even has a name: lagophthalmos. Who knew anyone could be a bad blinker?

Ready for the camera, bad blinker Susan Howell sports camouflage glasses.

It turns out the average person blinks 15 to 20 times per minute. That adds up to a lot of blinking throughout the day. With every blink, tear film in the eyes renews. Tear film consists of three layers: a mucus layer near the surface of the eye; a watery layer in the middle; and an oily layer on top that prevents the watery layer from evaporating. (Some research suggests that these layers aren’t completely separated).

My-Bow-Me-An Glands

Meibomian glands (pronounced my-bow-me-an) are tiny finger shaped glands in the eye lids. With every blink, they secrete the oil, known as meibum, through openings along the lid margin. At the same time, lacrimal glands — almond shaped glands beneath the outer corner of the eye brow — secrete the watery layer. The oily and watery layers spread across the ocular surface during the blink, lubricating the eyes. Tear film drains out through the tear ducts, carrying bacteria and other debris.

When the eyes need to, they automatically blink again, and the entire process repeats itself. A bad blinker, with a low blink rate or a partial blink, interrupts the delicate tear film cycle, reducing tear film production and leading to dryness.

Once I learned all of this, I understood how important it was for me to blink consciously, making sure I closed my eyes completely with each blink. I constantly struggle with this, but I’m determined to improve and stop being a bad blinker. You know how it is. You’re watching TV, talking the phone, or checking Facebook, and you catch yourself with that deer-in-the-headlights stare. Not good. Staring only makes things worse for a bad blinker.

Blinking Exercises

Blinking exercises can improve what you secrete and how you blink. I’ve tried them, but I find it hard to remember to do them. It’s something you might discuss with your doctor. He or she might recommend one or more of these exercises to improve blinking and reduce dryness.

While I’m still a partial, bad blinker who blinks too much, I make a conscious effort to blink fully throughout the day. Maybe one day I’ll even be able to say “cheese” in front of a camera without my sunglasses. So here’s to blinking, the right way!

Susan Howell


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Are You Treating Your Dry Eye or Someone Else’s?


When you first started treating Dry Eye symptoms, you may have started out using lubricating eye drops, most likely the less expensive ones with preservatives. For a while, maybe they helped. Maybe they still do. Or, maybe they don’t.

If you progressed beyond just lubricating drops, along the way you probably used some prescription medications to treat infections, inflammation, or allergies.

It’s possible you used something to clean your eyelids and lashes, or something to get rid of demodex mites.

Some of you had in-office procedures — tear duct cautery, meibomian gland probing, Lipiflow, gland expression, IPL, to name just a few.

Some even underwent surgeries.

What about supplements like omega-3 or lutein? Did you add those to your diet? Did you change it in other ways?

How about water, do you drink lots more now?

Some of you use lenses, like Scleral lenses or Dailies Total 1’s.

Warm compresses anyone? How many times a day and for how long?

Maybe you sleep with moisture chamber goggles at night and go out with wrap-around glasses during the day? Don’t’ worry, no one thinks you’re fooling around. Although some people might say you’re crazy. Have you heard, “It’s all in your head?”

It would be comical if it wasn’t so serious. Dead serious. And expensive. Did we mention PAINFUL?

Are You Treating Your Dry Eye or Someone Else’s?

Whenever we Dry Eye patients get together we like to talk about our symptoms and treatments. It goes something like this.

This is how I feel. How do you feel?

Are you treating your Dry Eye or someone else’s?

This is what helps my symptoms. What helps your symptoms?

We ask and we tell because we’re all desperate to feel better and get our lives off permanent hold. But there’s a risk, one that we should all be aware of.

Are you treating your Dry Eye or someone else’s?

What works for one person won’t necessarily work for another person, because all of our Dry Eye conditions are unique and special to each of us, just like our fingerprints.

Does knowing that make you feel any better?

We didn’t think so.

Consider a broken leg. If you show up at the ER with a broken leg, it’s quite likely the doctor will order an X-ray before setting the bone. Why? Because your bone and the break are unique. The doctor can’t treat yours the same way he treated the broken leg that came in the ER two hours ago.

If later, you run into someone who has a broken leg, you’ll probably compare notes. This is how I broke my leg, what the doctor did, and what I’m doing now. You might even exchange tips on how to scratch those hard to reach spots, how to keep your cast dry, or how to manage pain.

Each Dry Eye Patient is Unique

But you probably won’t rip apart your cast and try to reset your leg yourself. For one it would be hard to do (not to mention foolhardy), but you also recognize that your broken leg is unique to you

So just be mindful, when you’re chatting or talking with someone about your Dry Eye symptoms and set of conditions, that you don’t start treating something you don’t have. It’s a good idea to check with your doctor before you try anything new.

And yes, ask questions. Lots of them. The more you know the better, because your Dry Eye condition is unique to you and needs to be treated that way.


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Managing Dry Eye Today and Every Day


Whenever I run into someone who tells me they have Dry Eye, one of the first questions I ask is how they manage it. I want to know their diagnosis and the treatments they’ve been prescribed, especially if it’s something they need to do every day.

Managing Dry Eye Today and Every Day

Many of these people say their doctors diagnosed Dry Eye. They use nothing more than over-the-counter lubricating eye drops and they’re good to go. Sometimes the best remedy is natural allergy relief. Years ago I was one of them — diagnosed with Dry Eye and sent on my way with a sample of preservative-free lubricating drops. Sadly, those days are long gone.

A Spiral of Worsening Symptoms

As my disease progressed, doctors neglected to diagnose — and also treat — other related conditions. This caused a spiral of worsening symptoms. When things got really bad, and as I became more and more frustrated, I began my own intelligence gathering. I discovered what might be happening with my eyes, and what might be done to improve my symptoms.

Gathering intelligence took many forms. I listened to my eye doctor(s), spoke with other patients or found them on social media, and read what I could. All of this intel helped me weed out the viable treatments from the vast sea of nonsense out there, or what just might not be a treatment appropriate for me.

How I’m Managing Dry Eye Today and Every Day

Now, after surgeries, many other treatments, and years of applying a slew of medications to my eyes, my routine, is much less involved. Though it’s still nothing to sneeze at.

Susan Howell at a nature preserve with Rosy, an Australian galah parrot.

This is how I’m managing Dry Eye today and every day. When I wake up I rinse my eyes with sterile saline solution, then clean my lids with Ocusoft Plus, a foaming lid scrub. After that I use a prescription allergy eye drop, one in each eye.

It doesn’t end there.

I take supplements daily — Omega 3 fish oil, a probiotic, and turmeric. At day’s end I apply a warm compress to my eyes. (This late-night compress gives me a few minutes to relax while enjoying the warmth of the compress on my eyes). Afterwards there’s another lid scrub. Then finally, a drop of Azasite goes into each eye to combat bacteria that causes my tear film to be soapy. Phew!

What If I Stopped?

With so much eye care to administer at home, I sometimes ask myself, what would happen if I stopped my daily routine altogether? Would my eyes feel even worse? I suspect the answer would be yes, but I’m just not willing to find out, at least not yet.

Or sometimes I wonder if all of that care really helps my eyes feel better. Honestly, it’s hard to be absolutely certain. Even with a daily routine, my symptoms are like a roller coaster ride. Some days my pain is manageable. On other days I want to rip my eyes out. Sadly, it’s like that for many chronic Dry Eye patients.

Inflammation, My #1 Enemy

One thing I learned when I was in intelligence gathering mode is how inflammation effects my symptoms. Whatever the condition — meibomian gland dysfunction, ocular rosacea, anterior blepharitis, poster blepharitis, or demodex mites – most treatments aim to reduce inflammation. It’s often the inflammation that leads to pain, swelling, redness, dry or watery eyes, and leaves us feeling miserable.

The question is, what’s causing the inflammation in the first place? When my doctors treated the inflammation itself, I never really felt better. Now, I’m addressing the underlying causes – demodex mites, bacteria, and so on – and that’s why my symptoms continue to improve.

Some causes of inflammation are obvious, but others not so much. Figuring out my triggers was the key, because there are many things that can cause inflammation.

Diet

One is diet. I’ve learned that my diet is a huge factor in the inflammation associated with many of the ocular surface conditions I face. Sugar, in particular, is the mortal enemy of my eyes. Unfortunately, I have a sweet tooth. Aaaargh! Over the years I replaced sugar with fruits, vegetables, whole grains, and nuts. It wasn’t easy, but it was a change that helped a lot.

My #1 enemy. Sugar.

At a recent office visit with my ophthalmologist, he confirmed just how important a low-sugar diet is for me. When he examined my meibomian glands and found I was producing less oil, he asked if I had changed my diet. Reluctantly, I confessed to eating three jelly donuts the day before, too embarrassed to even mention I had washed them down with a root beer float! I was busted, but also more determined to be disciplined about what I eat.

If you’re thinking about making changes to your diet, vitamins, or the supplements you take, it’s always a good idea to check with your doctor first.

Hydration

I keep a glass of water on the kitchen counter.

Another thing I learned was how important it is for me to stay hydrated. When I drink a lot of water my eyes feel better. (Up to 60% of the adult human body is composed of water). Making sure I drink plenty of water throughout the day is essential. I keep a glass filled with water on the kitchen counter as a reminder that I need to drink up.

Do My Part, Stay Informed.

When I leave my eye doctor’s office with the hope that a prescribed treatment will bring me some relief, I remind myself that I need to do my part, stay on course, and be disciplined about the treatment, whatever it may be. If a treatment is making things better, great! If things get worse, I tell my doctor so my treatment can be adjusted.

Plus I continue to stay informed. If I hear or read about some new treatment or supplement through the Dry Eye grapevine, I ask my doctor about it. (We’re all on the lookout for that magic bullet that might bring us relief, right?). In this way, I stay an engaged and informed partner in my own health care.

Choose Hope

There was a time when I thought I was running out of options, depressed, and losing hope. I know now that there was no need to lose hope. There are lots of treatments out there, and some made my eyes feel a whole lot better. It took some time to get diagnosed and find the right combination of treatments, but I finally did. As a result, managing Dry Eye today and every day has become a lot easier. Even though there are still days when my eyes are miserable, my worst day these days is miles better than my best day 1.5 years ago.

So I choose hope. I hope you will too.

Susan Howell


Send your questions and comments to blogger@notadryeye.org.

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