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  • RCE and living alone

    Hi all, I've suffered with RCE since a trauma last year. I'm so happy I've found this forum because the main thing I struggle with is the loneliness of noone knowing what I go through, being scared to fall asleep. I was wrongly diagnosed several times and could only start treatment (lubricating drops and ointment) a couple of month ago. I have a couple of questions if someone could help I would greatly appreciate it.

    1. I've been seen by 2 doctors, one said I need to use the ointment, watch my hydration etc. for 6 months and then everything will be fully healed. The 2nd said I will have to use the ointment forever and will always have to watch what I drink, and will always have recurrences. Which one is right? and if I had PTK or some other therapy, does it ever get to the point where it's completely normal and I don't have to use ointment/eye drops?

    2. I currently live with my girlfriend but she has to move away later this year and I will live alone. My recurrences are severe and the pain stops me from being able to open either eye. When this happens my girlfriend sorts out taxis and guides me to the taxi and then guides me to A&E. How do people who live alone manage RCE? I have no idea what I'd do if I had an attack and I was alone, I wouldnt be able to use my phone to arrange transport or contact anyone, I would just have to stand outside my front door and shout until a passerby heard and hopefully helped me instead of robbing me.

  • #2
    I had RCE but no longer suffer pain for more than 1.5 years.
    My lessons to share

    1) do lid hygiene (or maybe add warm compress, if you have MGD)
    this is super important as ointment can block glands.
    Do not use baby-shampoo as it removes oil.

    2) when it occurs (& with big pain), dr should place special lens to protect cornea - only one dr did that for me for about 10 days

    3) ask dr to check your glands function including images & if you have MGD

    4) do NOT use ointment during the day
    5) wear swimming google when sleep

    I have only come to realize all these when I have learnt more.
    Sadly, none of 8 doctors even mentioned lid hygiene - all just recommended ointment.

    Have you tried/done any of above?
    Last edited by MGD1701; 25-Jul-2018, 10:14.

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    • #3
      Hi Jack. Right now you need to continuously baby your corneas, protecting them from the environment and keeping them moist. You might be sleeping with your eyes slightly open. This can cause RCE, so wear some night goggles, bubble bandages or even plastic wrap over your eyes and around your head to seal out the air. I use EyeSeals. Also before sleeping put in a thicker drop, if ointments donít work for you. I found Genteal Severe Dry Eye Gel was long lasting, soothed, moisturized, and really helped protect my eyes both night and day. For daytime, indoors and out, get some moisture goggles to protect your eyes at all times from air conditioning, wind, and other environmental factors. Many people like Wiley X, 7Eye and Ziena.

      https://dryeyeshop.com/collections/nights

      https://dryeyeshop.com/collections/d...ses-sunglasses

      https://dryeyeshop.com/collections/g...ts/genteal-gel

      I was told the surface of my eyes was like sandpaper and I had zero tear film for several years, and doctors were surprised I never got an erosion, so I honestly think the religious use of day and night protection plus Genteal is what saved me.

      For the long term, you might look into scleral lenses. Sclerals are nickel-sized dome-shaped rigid gas permeable lenses that vault over the cornea bathing them in saline all day, and the lens edges sit on the white sclera part of your eye. There are people who have RCE who these lenses have helped. Not everyone can tolerate sclerals, but itís worth going for a consult to try on a pair to see if it helps.

      The Boston PROSE scleral website has a good general description, and I also found another website as well, but there are several different brands. I wear the PROSE sclerals 12+ hours a day, and it helps a lot while I'm wearing them, and my eye surface seems to be in better condition after I take them off too. I believe sclerals are available in the U.K. at Moorfields and Oxford NHS hospitals.

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

      http://www.sclerallens.eu/possible-candidates/

      http://www.moorfields.nhs.uk/service/contact-lens

      http://www.ouh.nhs.uk/eye-hospital/d...ct-lenses.aspx

      Comment


      • #4
        I don't know where you live Jack but, if they are available, I highly recommend getting some serum drops compounded. Serum drops are made from your own blood which is drawn out and then spun down to separate the plasma out. It is then combined with saline and put in containers which you keep frozen. You only thaw out one vial at a time and it will keep up to 3 weeks in the fridge. The serum drops contain stem cells and other vital nutrients to help heal the eye surface and keep it healthy.

        Before I started on the drops I used to have dry spots on my corneas every time they were checked. Since I started using them I have not once had corneal erosions. I never had full blown erosions that debilitated me to the point that I couldn't open my eyes like what happens to you but for me they have been invaluable to the overall health of my ocular surface.

        Comment


        • #5
          Thanks everyone, on my next fun day out to the eye hospital I'll ask about checking my tear glands and getting serum drops/corneal lenses.

          Originally posted by MGD1701 View Post
          I had RCE but no longer suffer pain for more than 1.5 years.
          - thanks for the tips, although I'm not sure what you mean by "lid hygene". Also, do you mean you naturally no longer suffer erosions or do you still have to use ointments and wear goggles etc.?

          I guess there won't be many people on here who no longer suffer symptoms, and I really sympathise with people who have non-trauma RCE, it seems a lot worse... but can anyone back up what either of my opthamologists have told me? One who said I only need to lubricate my eye for 6 months before the abrasion is fully adhered again and then I'm back to normal, or one who said my eye would always be more fragile post-trauma and I'd get attacks all my life?

          If the latter is true, I'd rather push for surgery even if my attacks are getting less frequent, the anxiety is as bad as the attacks.

          Comment


          • #6
            had PTK which solved RCE - but recently one doctor told me that PTK can cause dry eye. But I had no choice. I have read untreated dry eye can lead to RCE.

            Lid Hygiene
            There are commerical available wipes - safer.
            Many videos at youtube, better find the ones from eye doctors - such as
            Dr Sandra Lora Cremers illustrates better
            Best way to wash your face and use diluted tea tree oil
            https://www.youtube.com/watch?v=14kFLBqXDHk
            Last edited by MGD1701; 25-Jul-2018, 07:23.

            Comment


            • #7
              Originally posted by MGD1701 View Post
              had PTK which solved RCE - but recently one doctor told me that PTK can cause dry eye. But I had no choice. I have read untreated dry eye can lead to RCE.

              Lid Hygiene
              There are commerical available wipes - safer.
              Many videos at youtube, better find the ones from eye doctors - such as
              Dr Sandra Lora Cremers illustrates better
              Best way to wash your face and use diluted tea tree oil
              https://www.youtube.com/watch?v=14kFLBqXDHk
              Haha I had an episode today and the doctor told me I have blepharitis and to do all the lid hygiene you listed above. Ridiculous that I've now been to 2 GPs, 3 A&Es, and 3 private optometrists for my RCE and this has never been spotted until now. Let me know if you have any other advice, thanks.

              Comment


              • #8
                Indeed, very ridiculous. None of 8 doctors told me lid hygiene nor did they detect MGD.

                MGD
                Since you have blepharitis - wise to make sure have your gland examined, images done etc as suggested earlier, if you have not done so. Best is to learn a bit by yourself - you wont get bored!

                Most people are under-diagnosed & untreated for years, like me, then miss the chance to stop progression.
                At earlier stage, MGD is not that difficult to fix nor to detect.
                When symptoms present, often moderate level at least.
                Last edited by MGD1701; 04-Aug-2018, 02:27.

                Comment


                • #9
                  I'm hoping my story will help others.

                  I had RCE for 2.5 years. Went to corneal specialist, opthamologists, etc... besides getting prescribed Xiidra, buying an assortment of eye gel drops, lubricants, etc... they still persisted, about once a month.

                  I finally, earlier this year, ran across a white paper online about an infant with a corneal abrasion that wouldn't heal. Turns out the infant was zinc deficient. Once zinc levels were fixed, the abrasion healed. Here's one example FROM 1982... you'd think they'd have put 2+2 together with this already. https://www.researchgate.net/publica..._corneal_ulcer

                  I got my zinc checked, and I'm deficient! I started taking chelated zinc, 30mg once a day with food in the mornings and haven't had a single erosion in 6 months!! I did, however, at once point, have a severe eye twitch problem for weeks, and read that can be a sign of too many minerals, so I backed off the zinc to a couple times a week and still- no erosions! Turns out there are zinc deposits in the eye, and zinc is a necessary mineral to make the eyes function properly, so please, please, request your PCP check your essential minerals (calcium, zinc, etc..) because those could be underlying issues with eye health.

                  I'm be curious to know if this is the same issue with other people. Essential minerals aren't routinely tested. How many people may be suffering when it's a simple daily mineral pill to fix it?!

                  Comment


                  • #10
                    Zinc wasn't mentioned to me but I take that anyway. I was however told to take vitD, omega3, and flaxseed oil, because they help open meibomian glands to stop tears evaporating.

                    My doctor's opinion is that the night ointments block up your meibomian glands, so when you use them it needs to be in conjunction with lid hygeine. I have found that if I put in too much ointment, my eye will be really red the next day, and using a hot compress usually helps settle this.

                    I used to take sleeping pills as well and another thing I don't think most people are aware of is that iburprofen and pharmaceutical sleeping pills suppress tears and dry out your eyes, now I've switched to herbal ones and have also found this helps.

                    Comment

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