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A message of hope

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  • A message of hope

    I'm better. Actually much better. I never thought three years ago that this would ever again be the case. Burning every waking moment. Eyelids sticking to my eyeballs at night. Significant depression. No real desire to continue on. I had zero Schirmer in one eye and 2mm in the other. My Lipiview showed 30% dropout in both lower lids.

    I'm grateful for this forum for helping me understand I wasn't alone and to educate me. That being said, I avoided checking in for months at a time, as it often brought back the depression and the fear. That's why I'm posting tonight and hope others add more success stories - they are out there and I'm one of them.

    I have two pieces of advice 1) find a doctor you trust and has a proven track record of happy patients - ask for references or do your own online research and 2) work with them on a treatment plan and a care program, follow it, and modify it as necessary with their guidance.

    After unsuccessful attempts to find a good doctor locally, I bit the bullet and traveled to Tampa to see Dr. ******. My past posts of these appointments are available if you want to search all the details, but in summary, after all four puncta were cauterized and three probings sessions over three years, things are quite good. The glands I have left are working well and producing good oil. My eyes are moist, sometimes too wet but I'll take it. No more burning, no more sticking. I'm living again. Yes, I have spent a lot of money with Dr. ****** these past three years. Would I do it again? In a minute.

    I've done all of these for three years now and will continue doing all of them:
    Heat mask every night for 10 minutes
    Doxycyclene 25 mg
    NAC supplement
    PRN fish oil
    Borage oil
    30 seconds of hot water over the eyes in the shower every morning
    96 ounces of water a day
    Blinking exercises

    I've stopped doing the following:
    Lid wipes - after running out and waiting for my amazon order, I noticed things got better. I continue to improve. I think there is such a thing as cleaning your lids raw. I never allowed the natural oils to build up and was always wiping them away.
    Cevimeline - this was an experiment by Dr. ****** that we both agreed after a few months didn't seem to make a difference.
    Allergy Eye drops - after a couple months, it seemed clear this wasn't my issue
    Rewetting drops - haven't need them for 2 years or more.

    Did I see continual progress - no, and that's what is frustrating sometimes. That being said, I can honestly say that every month was better than the next despite the daily ups and downs. If I was a 1 or 2 on a scale of 1 to 10 a few years back. I'm a steady 8 now with many days 9 or 10. I think if I hadn't been obsessing over my eyes daily these last three years, I probably wouldn't notice them at all. That's the next thing I need to work on - put this out of my mind completely.

    I hope someone who needs a boost is out there reading this. I certainly needed it a few years ago.

  • #2
    That's a really good post to cheer us up!

    I am loving it. Nothing feels more exciting to me as a dry eye sufferer than reading recovery stories.

    An important lesson that I learned is that regular cleaning of eyelids and eyelid margins can be detrimental washing away the lipid buildup. This is something I had been doing for the past few months.


    • #3
      Hello, I'm happy to hear that you are feeling better.

      I'm doing that at the moment:
      Heat mask every night for 30 minutes (I'm using a USB heated mask bought on amazon. which one are you using?).
      Fish oil (omega 3 supplement)
      70 ounces of water a day
      Nasal cleaning with saline solution, sometimes twice a day, sometimes once a day. (I'm doing that because it helps me to keep my nose free at night, and maybe it remove allergenes)

      I will try adding blinking exercises. Can you share how to do it?
      Today I bought Flaxseed Oil, I want to see if it helps.

      In my case it could be something allergy-related, because the ophtamologist found an allergic response, and the ketoftil eye drops let me feel a bit better (but far from normal).

      In these three year have you tried the Pulsed Light treatment (IPL)?

      With your protocol are you able to read books for 2 hours without problems? I'm asking because I can work in front of a monitor, but I can't read books for more than 30 minutes without feeling dry eyes.


      • #4
        Thank you so much for your message of hope, really needed to hear this right now.


        • #5
          Thank you, Iím happy for you!


          • #6
            Very pleased for you. Can you tell me how much NAC and borage oil you take please. And iWHAT PRN FISH OIL PLEASE. ALSO IS THE DOXY 25mg once a day and life long? Also did you have mgd? Do you use shy eye drops at all.