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It got better. Message of hope 2.5 years later.

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  • It got better. Message of hope 2.5 years later.

    I am one of those people from early 2018 who stopped coming here eventually. I could not work, drive, enjoy hobbies, at times sleep. I was in constant pain or strong discomfort apart from sleeping. I left my job, I was stuck at home, contemplating some very dark thoughts, going though panic attacks and depression. I despised my friends and their happy little lives as I questioned every morning why I had to wake up agains. I was hopeless and disappointed in medical professionals.

    But I am better now.
    My blinks do not hurt. That was a debilitating symptom.
    My eyes do not feel dry. Even in grocery stores. Only if humidity is below 40% indoors.
    No weird sensations or pain.

    I only feel them sometimes at night or in the morning. And not all the time.

    I can bike without dry eye glasses and my eyes tear if I am too fast. I still wear them often because every fast-going biker should.

    I don’t really use the eye drops much. Not going to the office helped. It was at times below 20% humidity. No, I can’t work in an full-time or evening part-time in the current office space. Ironically, thanks to a pandemic no one looks at me strangely for working from home.

    I drive. I can drive for 2 hours or more. When we bought our current car I could not drive at all. My eyes felt full, weird, heavy.

    My eyes are not scratched. My TBUT hovers around 8-9 or more. My inflammation score is still there but low. My osmolarity is still low. I can see oils in my glands. Some of them are kind of stuck so I still keep on daily massages.

    Yes, I am still afraid. I am afraid to jinx it. I am afraid it will come back full force. It was bad. Like, “I can’t live like this” bad.

    But a lot of times now I can think ahead. I can plan a trip. I can follow through. And I am not scared all the time. I have some power. High tech, low tech. I have some control and coping tools.

    One big learning from this. There is no recipe for recovery. Someone swears by eating certain foods, someone by Xiidra, someone by IPL, others by manual expression.

    Dry eye is complicated. At a certain point in my life I have read the full report from the dry eye doctor symposium. It is an amazing resource but way over my head in many respects. But it helped explain some of my conundrums.

    Dry eye is a wicked problem. It is multi-faceted with self-feeding loops and can arise from dozens of causes. Try to find your recipe.
    I will share more in comments.
    Last edited by hopeful_hiker; 13-Aug-2020, 22:30.

  • #2
    What has helped me
    • Daily survey. Every day, I filled a questionnaire that I have made using Google Forms. My symptoms score, what I have done, ate, slept. Eventually, I had a lot of data. One thing that stood out was sleep. Whenever I didn’t sleep enough I felt bad or in pain.
    • Sleep. Sleep is key. I go to bed late. I don’t care if that means I am sleeping until 10:30. A string of days that have enough sleep mean my eyes will be 90% normal. Sleep is extraordinary. I don’t know what happens, but it works like a charm. My worst flare ups were when I consistently did not get my 8.5-9.5 hours of sleep. Try it. Sleep until you wake up without alarms for a month.
    • Serum drops. I believe I have developed nerve pain due to dryness. My blinks HURT. I remember crying once when a wind blew in my face after a long painful day, causing my eyes to water and giving me relief. My blinks at not perfect. When we have 90% humidity days, that’s when I am fine completely. But it was not like that. Even in fully humid days, I felt pain. Even as my signs improved, I felt pain. Until I started taking serum drops. 100% first, 50% now. I didn’t take them for 3 months and I am ok. But I will continue taking them. They restore nerves and heal corneal abrasions. You should try it if you suspect you have neuropathic pain.
    • Restasis. Does it work? Who knows. But I am taking it and it does not hurt. I know I have inflammation still so I will keep taking it so that my signs are ok.
    • IPL (four times now yearly). Oh it hurts. And it’s expensive. And it freaks me out because I am afraid my pupils will somehow get damaged by light. But it also works. My oils are better. The tiny rosacea blood vessels are better.
    • Lipiflow after IPL. Two times.
    • 10-minute hot compress+massage plus gentle eyelid cleaning. I have a 20x mirror and I can see oil drops. If I have been bad, and skipped hot compress days, I need to do it for 2 days to see oils again.
    • Hypochlor. Does it work? Who knows. But I think it was one of the key ingredients in bringing the bacteria that can contribute to oil stagnation under control.
    • Avoiding low humidity. Saying goodbye to the office. That’s where I still feel like crap. And you know what? It’s not worth it. Indoor humidity has to be at least at 45% for me. Outdoor at 35%. Somehow I felt better in the semi-arid grassland Park then at the office. I believe a lot of people have damaged eyes from working at the office but they are just asymptomatic. I notice how my also young co-workers have red eyes. It’s not normal.
    • Book: you are not your pain. I was angry at all mental health professionals I saw. They didn’t know pain. They didn’t understand. But this book spoke to me. It was brutally honest and knowledgeable at the same time and that was comforting. The authors knew pain.

    If you are in the Vancouver or Seattle area, please go see doctor Periman. She is really intro dry eyes.
    Last edited by hopeful_hiker; 13-Aug-2020, 22:29.


    • #3
      Cause of my dry eyes:
      • Stress (unrelated to dry eyes) and subsequent crying
      • One thing from that time is now with me is tinnitus. That you can’t cure.
      • Being on the computer for 16 hours a day.
      • Being in a place with known allergens for 3 weeks.
      • Partial blinks.
      • Being in a dry place with forced air for three weeks.
      • Getting off the pill and making hormones go out of whack.
      • Rosacea flare up from crying.
      • Putting a meditation pillow on my eyes when my eyes started to get scratchy. Oh my. That led to even more scratching.

      Things I have ruled out or tried.
      • Sjogren’s: basic blood work and lip biopsy
      • Diet issues (Omega did nothing for me)
      • Xiidra made me feel worse. May be coincidence.
      • Gluten. I eat fine and gluten-free diet made no difference.
      • Plugs. They really helped at the time and made my life better. Lower plugs only.

      Last edited by hopeful_hiker; 13-Aug-2020, 22:08.


      • #4
        I am so happy to hear you are doing better! That’s definitely one positive result of the pandemic, maybe others have or will have some benefits not going into the office too.

        It is so great to get posts from people who have made it through. It’s a process that one continues to fine tune, I still make changes to my diet and regimen and it’s been 5 years since I started being able to manage my condition.

        It’s interesting how things like lack of sleep and crying can make one’s eyes worse, you are so right those can be triggers. Several nights ago my little senior doggie was having a hard time breathing and was extremely anxious for several hours in the middle of the night, and it worried me so much I didn’t sleep the entire night and was crying because it seemed it might be it for her. Fortunately she is ok for now, but up until today my eyes were severely dry, I couldn’t even wear my scleral lenses. I think sleep really helps one’s eyes rest and heal, and crying and stress can be very inflammatory.

        Consider submitting your story to Rebecca and Aidan’s Our Dry Eye Stories, if you have not already. It’s a nice central platform to capture success stories like yours to give people inspiration and hope. I’ve had many people from both within and outside the forum reach out to me on that site where my story is there with many others’ stories, so hopefully we can provide support and hope to even more people.
        Last edited by Hokucat; 13-Aug-2020, 22:55.


        • #5
          So good to see you virtually! Hokucat, thank you for commenting and so great to see you here again, sharing your experience and learnings with others.

          Yes, I actually had 2-week insomnia prior to dry eye onset. There is no way that was not a major trigger. I also got a bit better in the fall of 2018 and drove to an early morning function at work. I was in pain for two days. I was so desperate to prove that I am not “done” and that I am not “damaged goods” that I didn’t go home instead. This illness was completely invisible in my case and I did end up facing subtle discrimination at work.

          I hope your doggie is okay. <3

          Thank you for the suggestion! I hope to submit it eventually.


          • #6
            Thank you for sharing great news. So happy for you.

            Nighttime protection
            Do Dr. Periman recommend ointment? Brand?

            Does Dr Periman control it with Azyter or other drugs?

            Red lid margin upon awakening
            Do you have such issue? Do you know why and how to improve it? nighttime ointment, perhaps?

            Thank you.


            • #7
              congrats, really happy for you!!


              • #8
                Originally posted by Guest View Post

                Nighttime protection
                Do Dr. Periman recommend ointment? Brand?
                Not to me, I already had a preference. Ointment caused a lot of redness and tearing and my case. I used to put a Hylo Gel (2% concentration sodium hyaluronate) and then rub ointment on closed lids to seal off any air.

                Now I still use Hylo. Typically, 1%.

                Originally posted by Guest View Post
                Does Dr Periman control it with Azyter or other drugs?

                Red lid margin upon awakening
                Do you have such issue? Do you know why and how to improve it? nighttime ointment, perhaps?
                She did not recommend Azyter to me. However, she has a long list of approaches. They are tailored to each person.

                I do not have red lid margin. My redness was actually caused by the ointment. I actually kind of wish I never used it because I clearly can’t tolerate it.


                • #9
                  Originally posted by deep_dry_eye View Post
                  congrats, really happy for you!!
                  Thank you!!!


                  • #10
                    Thank you so much for such a comprehensive post. So so grateful. Do you have evaporative dry eye?


                    • #11
                      Originally posted by LindaDawn View Post
                      Thank you so much for such a comprehensive post. So so grateful. Do you have evaporative dry eye?
                      I am glad you found this post helpful!

                      I think in my case untracked EDE led to inflammation and ADDE. There is confusing evidence (for laymen at least) suggesting that inflammation can impact the lacrimal gland even in the absence of a systemic auto-immune disease.
                      My glands were blocked and full/fat. Docs performed debridement, IPL and Lipiflow to get them better.

                      I still have thickish oils. I can skip compresses but eventually it catches up to me. I also use hypochlor since thick oils can be a result of bacterial activity. Bacteria can munch on oils causing oils to get worse. So it is a cycle.

                      I use a mirror during a gentle massage to see if oil escapes the glands. I can also see it float around the ocular surface (makes things blurry).

                      My tear meniscus was okay. Schirmer’s is kinda useless but my results were crap.


                      • #12
                        Thank you again. I can’t bring myself to look at my eyes so I couldn’t do what you do. Which hypochlor cleanser do you use? I use Occusoft in the shower 8n the morning. Maybe I should use at nighttime as well. Keep us updated please on your progress. It helps enormously. Thank you again.


                        • #13
                          Hi hopeful_hiker

                          Could you kindly satisfy my coursity, if you dont mind. You mentioned,

                          1) 'LipiFlow after IPL': How long after the (last) IPL?

                          2) Rosacea blood vessels - Did Dr Periman ever mention if demodex is the trigger for such blood vessel?

                          3) 10-minute hot compress+massage plus gentle eyelid cleaning
                          How do you massage, with fingers, q-tip or other methods? Do you agree that if the oil is clear, no need to massage?

                          4) Hylo Gel (2% concentration sodium hyaluronate)
                          Is sodium hyaluronate same as hyaluronic acid (HA)? Seems not.

                          Thank you so much.


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