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  • Worse by treatments?

    I'm a woman in my early 30's from North of Europe. Was up and going with my very prominent career as an architect when this all happened. It was also a period of suddenly loosing my father and family tragedies following this event. Having healthy eyes and perfect sight I suddenly two years ago woke up with recurrent corneal erosions. When seeking help for this they told me I had blepharitis. I got put on oral tetracycline and Dexamethasone drops for a couple of months. The recurrent erosions disappeared but I began having symptoms of dry eyes. 1,5 years ago I started to search help for my dry eyes and have been thorough several treatments (again with oral antibiotics and Dexamethasone drops), I have been doing lid scrubs with lid massage and heat packs, eating omega 3 supplements, taking lubricant drops...but by every treatment I only got worse. By every treatment with cortisone drops worse. Lubricant drops only seems to irritate my eyes (and yes I use preservative free) and lid heating irritating the day after. The diagnosis I got is MGD and too low production in tears (around 2 on Schimmers test). Some months ago I took a flight overseas to meet a specialist in Florida and he did intraductal probing with manual expression on me and cauterized my tear ducts. Before the visit I was feeling as a 5 on a scale of 1-10 where 10 is worst ever, leaving the clinic I was feeling as a 9-10. So I got so much worse by these treatments as well and I still haven't recovered now three months later. He told me I have conjunctivochalasis on the top part of both eyes, something all other doctors told me they really couldn't see. He also told me that his treatments with probing and cauterization would bring me down to a 2 of 10 and then I could consider an operation for the conjunctivochalasis or not. He was not prepared I would feel crap after his treatments and I never really got any answer why they made me so much worse. If really the issue is MGD and lack of tears at least some of the treatments should pay off? At the moment I am sleeping with moister chambers, avoid taking lubricants since some days as I had a bit flare up a couple of days ago and really don't understand why (perhaps I shouldn't have gone to that spa the other day) My eyes are not red at all, they burn a lot and it feels like someone's putting acid inside them....and the last days it feels like I have something underneath my upper eyelids. I feel fine when sleeping and five min when wakening up but then hell kicks in. I am out of gluten and coffee since several months and cut out suger but nothing seems to help at all. At the moment I am feeling as a 8-9 on a scale of 10 and life is simply horrible. I'm not sure how to think about regime anymore, not sure if I dare to do the lid heating and massage anymore, not sure if I dare to put warm compresses tonight or not, not sure about anything at all. I do have hypothyreosis but have been on medication last 9 years.

    That's my story so far, hopefully I'll have something more positive to share later on (a regime that works and so on) but at the moment I'm simply struggling with keeping mood up.

  • #2
    Ella, I'm going to bed soon but will reply tomorrow, keep your head up!

    Comment


    • #3
      Hi Ella
      I had recurrent corneal erosions, inflammation and MGD for some years.
      As untreated by more than 15 doctors who just gave me (wrong) drops many glands are gone.

      Warm compress: Do you feel oil? Is your oil thick, glands are clogged? If you dont feel great after compress, something wrong.
      I find with wet heat (like Blephasteam/42C) is effective/safe - wet heat can also remove dirts, bacterias etc.
      Seems you use (microwaved) heat pack? I tried it too, dont find them effective/safe.

      Lastly, after visiting many doctors, I realized they are not so knowledgeable nor solution-driven.
      So I have done lots of research/experiments (like a full-time job) and solved problems by myself.

      It is important to identify problems/causes (for example, Vit. A, D, issues?) and
      tackle them ALL at the same time - slowly you could achieve results.
      Last edited by MGD1701; 15-Jul-2017, 08:03.

      Comment


      • #4
        Hi MGD1701.

        About the warm compresses: I used Blephasteam for 3 months following massage without noticing any difference. I went over to the gel ones you heat up in the microwave and after being shown how to properly massage I did have oil coming out. The doctor told me to do this 2-5 times/week as more then that could be irritating. However, when I use the warm compress following with massage, my eyes get blurry so I guess oil is coming out. However, the day after my eyes tend to get worse and I am suspecting this is what cause my last flare up with lasted 3 days now (that I went to the spa 4 days ago and went to steam saunas as I thought that could be good).

        I also did manual expression of my glands at a doctors office, after that I had a major flare up.
        Later on I did intraductal probing with manual expression at dr Maskins office in Florida, and the day after I had a major flare-up which lasted for several months now. Since the last treatment my eyes are much worse and the flare ups much more extreme. Everytime I try to use warm compresses since the last treatment it seems like I have a flare up. I do the massage properly and do not over heat the heat pack.

        I take Vitamine A, D, Zink, Selen, Mg since 5 months now

        As I am diagnosed with MGD and lack of tears treatments with warm compresses and massage should work but I get the opposite effect...and the treatments I took at the clinics (manual expression which is similar to lipiflow) should work but they all caused me flare ups.

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        • #5
          Hi Ella
          Erosion: Did you solve this? I did PTK to solve the problem.

          Glands/oil: first try to collect facts so you can deal them in a more effective fashion.
          If you oil is clogged, first need to open. LipiFlow helped me on this.
          I think this is most important to get oil running. Warm compress can NOT achieve this (if glands are too clogged) as the heat can NOT get to side.

          Last edited by MGD1701; 16-Jul-2017, 15:11.

          Comment


          • #6
            Hi Ella

            I think we all know how you feel. I am 28 from Ontario, Canada female. I developed this problem when I was 22 after a stressful period in my life as well. I had moderately bad skin as a teen but nothing too bad. All of a sudden, I developed rosacea and MGD. It has been hell as well. I am going to MGD probing hopefully this year but am hoping it doesnt make me worse, Your story makes me a bit hesitant, as you are not the only one to say it made them worse. I will tell you what I have done to make myself a bit better:

            *warm compresses at night, followed by a lid expression
            *using 4 fish oil per day (must be in triglyceride form)
            *i use a low dose steroid once daily (risky but my doctors are ok with it, as long as I am checked regularly)
            *I use Cliradex (lid wipe) at night due to my rosacea
            *Restasis twice a day (don't think its available in Europe?) I could be wrong though
            *anti depressants, this made me mentally accept the chronic nature of the condition so I didn't go crazy
            MOST IMPORTANT FOR ME WAS DIET. I now eat a low carb, low sugar paleo diet

            Hope this helped at all?

            Comment


            • #7
              Hi Ella. When you had probing done, did you feel any "pops"? Typically if the glands are blocked, when the probe unblocks a gland, the patient feels a pop. If your glands were indeed unblocked from the procedure but you feel no relief, it may be that they are not producing any oil or the quality of the oil is poor. If so, probing alone will not help.

              My oils were thick like Criso oil, or dried up. Besides being diagnosed MGD and blepharitis likely due to autoimmune disease and complicated by excessive computer use, I also had 0-1 TBUT and zero Schirmers in both eyes during my worst years.

              I had five probe procedures over two and a half years. After each of the first four procedures, my eyes felt a very tiny bit better after each probe, but after a week any improvement was gone, and during that time I recall my condition continued to worsen. In general I was eating a very healthy overall diet, but after each of the probe procedures I made different diet changes to see if I could change my oils to flowing, but nothing worked until I started drinking fresh lemon juice in green tea 2x daily after my fifth probe. After less than a week, my eyes started feeling more moist. They have continued to improve, and I have not needed a probe since then (late 2015), and my doctors confirm I now have some tear film.

              So somehow the lemon/tea helped my oils and possibly my lacrimal glands, for you or others it may be some other diet changes, IPL, or even meds like doxycycline or testosterone cream. But it was a two-step process by FIRST unblocking my glands with probing, THEN finding the lemon/tea. I still have some degree of dry eyes, but now it's manageable. Here's a thread where I posted some key factors that helped me, including diet, in case it might help you.

              http://www.dryeyezone.com/talk/forum...ccumulate-info

              I hope you find some relief soon.

              Comment


              • #8
                Since you say everything is making it worse, I'd be tempted to say try stopping everything except a night ointment to prevent another erosion like the one that started everything off. Then add things back one by one and stop them if they cause more irritation / flare. That can even include any supplements etc.

                If a warm compress is irritating despite getting a flow of oils then perhaps it's something about the quality of the oils being spread. You could also consider rosacea involvement as heat worsens this, rosacea can also lead to blepharitis and one trigger can be physchological stress which could tie in to your initial cause (grief). Perhaps see a dermatologist about a diagnosis. If there is rosacea involvement then eye doctor Latkany is supposed to be experienced with ocular rosacea.

                Maybe try a cold compress too:

                http://www.dryeyezone.com/talk/forum...-cold-compress

                http://www.dryeyezone.com/talk/forum...presses-scared

                And antioxidants to improve the quality of the oils, like Hokucat's citrus green tea idea or a diet / supplements with Astaxanthin, Lutein or Zeaxanthin. There's an antioxidant eye drop called VisuXL released recently. There are also antibiotic eye drops and ointments like chloramphenicol, levofloxacin, azithromycin etc. if you've already tried oral doxycycline.

                You mentioned you do lid scrubs so maybe you've already tried all these but for eyelid hygiene and hydration there's: Ocusoft Plus, Cliradex, Optase or other Tea Tree wipes, Heyedrate, Ocusoft Hypochlor, Avenova, iLast Hydraclean, fractionated coconut oil, cucumber gel.
                Last edited by PhoenixEyes; 16-Jul-2017, 06:26.
                Sufferer due to Toxic Epidermal Necrolysis.
                Avatar art by corsariomarcio

                Comment


                • #9
                  Hokucat Thanks for the tip, I started with green tea and lemon juice yesterday, excited to see if it gives any result.
                  When I had the probing done I did feel "pops" but didn't get any relief, even felt way worse, after the procedure. Not sure if there is any difference in intraductal probing (which I had and the "pops" where scarring opening up) and probing (which I had once in Norway, where I only had a couple of glands in total being blocked, rest was open and they perfomed manual expression without probing).
                  I can mention thought that when I used to do warm compresses with lid expression at home (which I performed constantly for a year but stopped with 10 days ago as I felt it's making me worse) I use to get oil out even after just a minute or so. But warm compresses and lid expression always made me feel more dry.

                  It's still a mystery to me whats causing the extreme burning, by dr Masking I got told I have conjunctivochalasis and that a surgery would correct this, but he also told me the intraductal probing would bring me to a better state and then made me worse. I am rather suspecting that the bad guy is the poor quality of the oil, and as I do have hypothyreoses there could be some autoimmune involvement.

                  Comment


                  • #10
                    PhoenixEyes thanks, will look around for a dermatologist and check on the possibility of ocular rosacea (even though I never had any skin problems related to this but perhaps its not connected)

                    Comment


                    • #11
                      I am rather suspecting that the bad guy is the poor quality of the oil, and as I do have hypothyreoses there could be some autoimmune involvement.
                      Others have mentioned thryoid issues in relation to dry eye so definitely worth seeing whether that is a factor.

                      http://www.dryeyezone.com/talk/forum...e-and-thryroid

                      If you also have dry mouth then secretagogues like Evoxac, Salagen etc. may be worth a shot, some lucky few also find it helps their eyes.

                      http://www.dryeyezone.com/talk/forum...1-evoxac-users
                      Sufferer due to Toxic Epidermal Necrolysis.
                      Avatar art by corsariomarcio

                      Comment


                      • #12
                        Hi Ella. It does sound like poor oil quality is contributing to the burning, since you say after warm compresses, manual expression, probing, etc. you feel worse. Seems these things may be helping more oil, abeit poor, to be excreted. Given you seem to be worse after probing, that may have opened up your glands so more poor oil is coming out than before, possibly causing the increasing flare-ups since the probing.

                        So definitely worth a try to somehow improve your oil quality. Lemon juice in green tea worked for three other people besides me who also have MGD and blepharitis, so it's a place to start. If it doesn't work for you, don't be discouraged, there might be something else your body needs to function correctly to make good quality oil. I tried many diet changes over a period of a few years, one at a time for at least two weeks at a time, before I found lemon/tea worked for me. Someone else has posted adding basil worked for them, others detox before changing to a healthy diet, etc. Some people's oils have also improved with IPL, and meds like doxycycline, testosterone cream, and taking oral hormones. Everyone's circumstances can be different, so unfortunately no one easy fix!

                        Given while sleeping you do not have discomfort (good you wear moisture goggles at night), until five minutes after you get up, sounds like limiting exposure to air may help. Perhaps wear air shields/goggles during the day, including while you are indoors...many people seem to like 7Eye and WileyX.

                        I would not rule out conjunctivochalasis. You might have both this and poor oil quality. Apparently CCH causes burning too, but does not always require surgery. Perhaps you can get a second opinion on whether you have this and if surgery is recommended from someone whose specialty includes this area.

                        I also wear scleral lenses 12+ hours a day to help with remaining dryness I have from lost/atrophied glands. It may be something you want to consider if you cannot adequately resolve your MGD. However, sclerals might not be a option until you take care of the CCH, if you do indeed have that. Here's a good description of sclerals in general on the Boston PROSE scleral website, but there are several different brands:

                        http://www.bostonsight.org/PROSE/PRO...y-Eye-Syndrome

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