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  • Help me sort things out

    So everytime I visit a new eye doctor, they tell me my cornea looks fine. Even under fluorescine there's bearly any damage visible, almost indistinguishable from healthy eyes. Sometimes even no damage at all. Little to no redness. Still my eyes burn a lot. I got lipiview treatment and my meibomian glands also look pretty ok, oil is expressible with mild force
    Only eye doc flipped over my upper eye lid and told me the surface of my conjunctiva looks very rough and is probably causing all my problems. White discharge in eye and burning sensation. She suspected an allergic reaction.
    I tried anti-allergic drops but they didn't help. I'm on Ciclosporin now for about 4 weeks and my symptoms got at least 50% better.
    Still I think I'm actually battling a chronic conjunctiva which is causing 99% of my symptoms and haven't found help for that so far. So obviously heat isn't the right choice for an already irritated conjunctiva.
    Also I'm trying alternative medicine which treats the body as a whole and not only the eyes. Healthy mind, healthy body...
    Another thing I noticed. My emotional state seems to influence my eye pain a lot. Just this week I had an appointment where I felt really uncomfortable and my eyes burned pretty hard. I also forgot my eye drops so I had to go through this and couldn't wait to get my drops. As soon as I left the office (with a good feeling) it took only 1-2 minutes for my eyes to be good, with no drops or anything inserted. This happens a lot. I can go from good to bad and from bad to good within little time. If there would be constant inflammation, this also couldn't be the case, right?
    I also have regular psychotherapy now, although I feel like it's not really helping me so far. I've been diagnosed with anxiety disorder for many years and my therapist seems to put all the eye symptoms on my nervous system. Also I'm starting to think there's a huge involvement, I don't think it is 100% of my problem.
    So what could be next on my treatment schedule? Cold compress 3 times a day? Low dosage steroid drops?
    Last edited by wissen1; 23-Aug-2017, 01:50.

  • #2
    There is also the possibility of corneal neuralgia, some get it after chronic inflammation for a long time. It's sometimes known as "pain without stain" referring to the fluorescein dye staining test they do to check cornea dryness etc.

    http://ophthalmologytimes.modernmedi...peutic-dilemma

    As you say cyclosporin, an immunosuppressant, made things 50% better, maybe you can ask about low dose 0.03% tacrolimus ointment on eyelids which is also an immunosuppressant. A few on the forums found it helpful but others found it too irritating to tolerate so as with everything it's trial and error.

    http://www.dryeyezone.com/talk/blogs...-dry-eye-cases

    http://www.dryeyezone.com/talk/forum...-to-tacrolimus

    http://www.dryeyezone.com/talk/forum...3-ointment-w-w
    Sufferer due to Toxic Epidermal Necrolysis.
    Avatar art by corsariomarcio

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    • #3
      Are you referring to "pain memory"? You mean some sort of phantom pain? Like when somebody loses a leg and still feels pain there? I guess psychotherapy is the right place to start treating it since I also react with pain to a bad emotional state?
      I just went riding my bike for one hour with a constant speed of 13mph which is usually terrible for anyone suffering from dry eyes due to the wind. I feel super afterwards...even the dry eye forums can't explain this to me. As I said in my starting post, I don't even think that my cornea is causing the problems, but rather the conjunctiva.
      I guess dry eye is really different for anyone out there.

      P.S.: Please don't give me any triggers that could worsen my mental state. I'm very prone to this atm due to anxiety disorder.

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      • #4
        I think the neuropathy has more to do with the nerves on the eyes becoming more sensitive to pain. Having zero sensitivity is not a good thing either though - the nerves remind you to blink. Stuff like autologous serum, amniotic membrane etc. that has nerve growth factors can be helpful to some people with it or just for dry eye in general. I didn't meant to worry you, just someone recently said their eye doctor said their eyes looked totally fine, all tests come back good, but they still felt awful, and some suggested exploring the idea of neuropathic pain. It could be totally off mark like you say, we on the internet can't diagnose.

        For some people hormones can be a factor. The eye is a mucous membrane and hormones regulate how lubricated they are. A few here, male and female, have gotten hormone levels tested and gone down that route with success for their dry eye. Exercise like cycling can cause a rise in certain hormones which may be proving beneficial, I know some here have had reduction in dry eye when modifying testosterone etc. levels. Exercise also releases endorphins and happy confident experiences release dopamine which can reduce pain perception.

        Getting your psychological well-being is important since anxiety and panic attacks redirect supply e.g. blood to certain organs that would be traditionally used to face off to or flee from a threat (aka the fight or flight response). Cognitive behavioral therapy, mindfulness, meditation are all potential things to try on the psychotherapy path. Nutrition, sleep, exercise and such are also important.

        Yes dry eye is different for everyone and so too the best treatment path so don't take anything I say as pure undeniable fact, just take it as throwing ideas out there in case one clicks and offers an idea for another solution to try.

        I hope I am of any help. I have also experienced panic attacks so I don't intend to make things worse, I wish you all the best. I hope I didn't offend you.
        Sufferer due to Toxic Epidermal Necrolysis.
        Avatar art by corsariomarcio

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        • #5
          Thanks for your very well written and considerate post. I can't thank anyone enough trying to help people in need. I'm sure someone up 'there' will recognize this as well.
          If at all my eyes got less sensitive to environmental triggers. For example if I got cigarette smoke in my eye it used to hurt a lot more a few years ago, I remember this. I think I really should put autologous serum on my therapy plan, but it's so damn expensive. No insurance will pay here for this in my case.
          I think I got all blood tests done possible that could be related to eye problems and sadly (lol) my blood tells me I'm as healthy as I could be. I didn't test testosterone specifically but DHEA which I was told is something like a pre-hormone and should be off the mark as well if there is a problem with hormones involved.
          I think the hardest part about all this dry eye stuff is finding the right doctors to do the right tests for you.

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          • #6
            Autologous serum is rarely supplied where I am too so the cornea specialist suggested fingerprick autologous blood 4x a day. I sterilize finger with an alcohol wipe, prick with a sterile lancet like when diabetics test glucose levels and place the blood inside lower eyelid. It has taken the edge off some of the pain and maybe helped with inflammation somewhat. Sadly my case involves all three layers of the tear film, tear deficient due to lacrimal gland scarring, oil deficient due to meibomian gland dysfunction and possibly mucin deficient due to reduced goblet cells. So still suffering chronic pain and vision issues. Going to keep up with it though and carryon trying other things.

            Sounds like you may not need to go that far though, it seems lifestyle changes and psychotherapy could be a great help instead by the sounds of the great relief you're already getting from exercise and such. With psychotherapy there's lots of different methodology, like cognitive behavioral therapy, mindfulness therapy and other forms to try if one doesn't work out. It will take time to see results but take it a day at a time. You may also find the cyclosporin continues to improve things further as for some it can take a few months.

            Steroid eye drops carry risks, so if you do try those maybe just go for it short term and get monitored for raised eye pressure and cataracts if long term. Cold compresses sound worth a try first.
            Sufferer due to Toxic Epidermal Necrolysis.
            Avatar art by corsariomarcio

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            • #7
              There were even days where I just used lubricating drops because I felt like well it couldn't hurt to lubricate the eyes from time to time although I didn't feel the need to. I just hope it's not just coming from the ciclosporin. Because well I can't use it forever....
              So you're not getting autologous serum because of the cost or you can't get it anywhere near you?

              I still wonder what happened to me a few months ago. Until March 2017 I was still sitting endless hours in front of the computer everyday with some mild burning here and there and all of a sudden everything got out of control. By that time I suffered two tragic events in my life, which also fully triggered my anxiety disorder again.
              Last edited by wissen1; 23-Aug-2017, 12:25.

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              • #8
                There was a trial that said at least 6 months or more on cyclosporin led to improved symptomns even after 10 years.

                http://bjo.bmj.com/content/early/201...ol-2015-306930

                In UK we often rely on the free National Health Service, but they're particular about sending the drawn blood to GMP labs for processing so the costs end up being expensive £400 ($512) per month, and local CCG groups decide whether or not the NHS will fund it, some groups struggle with budget more than others and refuse to save on costs. But yes also I wouldn't be able to afford it myself if I went via private healthcare.

                There are some who say they went through a period of grief or severe stress, then their problems started. We all differ in how our bodies cope with certain things, so I believe anything is possible. I also think if we already have a slightly compromised or deficient aspect of our bodies, e.g. the occasional burning you had, then panic and anxiety can tip it off the scale as our body is less able to compensate.

                There's some threads discussing anxiety and dry eye:

                http://www.dryeyezone.com/talk/forum...eye-connection

                http://www.dryeyezone.com/talk/forum...se-from-stress

                http://www.dryeyezone.com/talk/forum...d-dry-eye-pain

                http://www.dryeyezone.com/talk/forum...-like-symptoms

                http://www.dryeyezone.com/talk/forum...on-trigger-mgd
                Sufferer due to Toxic Epidermal Necrolysis.
                Avatar art by corsariomarcio

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