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Does anyone else have to walk around with one eye closed because it's more bearable.

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  • Does anyone else have to walk around with one eye closed because it's more bearable.

    Hi
    just wanted you know if anyone else is having to close one eye in order to reduce discomfort. Fir example today I closed my right eye for 4 hours. Having to do so on a daily basis. What a rubbish disease this is!!!!

  • #2
    Yes, I had to close both of my eyes the majority of the time during the three years I was homebound to reduce discomfort. Eventually I developed blepharospasms (involuntary blinking/shutting of the eyes). My eye doc explained this condition developed because itís human instinct to close the eyes when it feels damaged for protection, and at that point I was told the surface of my eyes were like sandpaper and I had virtually no tear film. However despite this, I never got an erosion or abrasion, so am thinking closing my eyes along with everything else I was doing to baby my eyes like Genteal gel, serum tears, moisture chambers, night goggles, etc. must have helped protect my eyes even though this was a tough period.

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    • #3
      Hokucat. Thank you for your reply. was getting worried I was the only one doing this. How are your eyes now? I am having a pretty rough time at present. Been prescribed restatis but too frightened to use it in case I get left with permanent red eye and because I have mgd and my research has shown it only works for aqueous dry eye. I would like to try serum tests. Did serum tears work for you?

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      • #4
        I am managing now, including knowing my limits so my eyes donít start going downhill again. Besides MGD I also have aqueous deficiency, and when I used Restasis for several years my eyes got worse. Iím not saying the Restasis added to my issues, it might have, but it didnít help me personally.

        I still use serum tears, but am not certain how much it helps me. But despite having very severe dry eyes, Iíve never had a corneal abrasion or erosion, so it could have helped prevent that. Iíve heard it especially helps people who have corneal neuropathy and personally know someone who has damage to their cornea who it helps.

        I just responded to another post where I posted a link to my Dry Eye Story. Am putting it here also for you in case you didnít see it, if by chance thereís something there that might help you:

        https://www.dryeyestories.com/new-bl...ous-deficiency

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        • #5
          Thank you so much. I have already been using green tea with lemon for over a year from one of your earlier posts. It doesn't appear to have helped me but maybe stopped from getting worse. I am a nurse from England who has suffered for past 3.5 years. I had to go part time from my job that I loved as I couldn't manage. Thinking I may have to give up work as my eyes are getting worse. I am eating a healthy diet. I have no tests too. I think I could possible have sjogren'syndrome too as I keep catching colds. You are so kind responding to my posts. God bless you and your family. Let's hope in the future we get better treatments.

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          • #6
            Youíre very welcome. Want to help support if I can. What is the quality of your oils like, is it thick like toothpaste, are some glands not producing any oil, etc? Have you tried any treatments to try to unblock or open up your glands, like manual expression, Lipiflow, IPL, or probing? Just thinking given you have MGD and itís getting worse, you may need to do treatment(s) to try to unblock the glands first, or things like diet changes, doxy, etc. may not help.

            Being a nurse is a good background to have dealing with this condition, with all its complexities, research, and trial and error. If you are able to take a complete break for awhile to focus on getting better and not be utilizing your eyes at work so much, that might be beneficial.

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            • #7
              Hi. I went to our emergency Eye hospital in London 3 weeks ago and they said I had plenty of oils. Thinking that it what is irritating my eyes. That is why I am thinking Theratears would address that imbalance. They are not available on Amazon UK website currently. I hAve a box of restatis at home but too frightened to try them. Got a hispital eye appt on 14 August so I will wait to see shar she says. Not had probing, IPL or anything like that. Thinking of trying PRP drops. Thank you so much.

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              • #8
                Originally posted by Hokucat View Post
                I am managing now, including knowing my limits so my eyes donít start going downhill again. Besides MGD I also have aqueous deficiency, and when I used Restasis for several years my eyes got worse. Iím not saying the Restasis added to my issues, it might have, but it didnít help me personally.

                I still use serum tears, but am not certain how much it helps me. But despite having very severe dry eyes, Iíve never had a corneal abrasion or erosion, so it could have helped prevent that. Iíve heard it especially helps people who have corneal neuropathy and personally know someone who has damage to their cornea who it helps.

                I just responded to another post where I posted a link to my Dry Eye Story. Am putting it here also for you in case you didnít see it, if by chance thereís something there that might help you:

                https://www.dryeyestories.com/new-bl...ous-deficiency
                You mention that Restasis made you worse. I believe that it also made me worse. I used to be able to manage my dry eye with a few drops during the day and since being on restasis my eyes are irritated and need more drops. Especially after the second drop of the day. Can you please share how it made you worse? Thank you

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                • #9
                  I donít know whether or not Restasis contributed to my worsening eye condition. But during the several years I was on it my Schirmers went down to zero, my TBUT virtually nil, and the entire surface of my eyes became like sandpaper. At this point I had to use drops all the time as I was in debilitating pain, especially gel drops helped some since it would last a little longer, but really could not get any material relief for years. Despite this, several doctors (I made the rounds) still asked me ďAre you on Restasis? If not I can prescribe it for you.Ē I think they were highly incentivized by the pharmaceutical company to prescribe this to many dry eye patients even though the success rate is so low. Iím sure it helps some people, Iíve read of some in this forum who it helped, but not me.

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                  • #10
                    Hi:RESTASIS made my eyes worse... my eyes kept getting more and more irritated till I absolutely had to stop.I was using a lot of the original REFRESH PM ointment (someone had given me 20 tubes...) day and night and my eyes kept getting very irritated ...one day I forgot it when outside and had to get SYSTANE ointment and it is much more helpful (also day and night).I wash my face and eyes every night with organic baby body,shampoo soap and tape my eyes (kind of....) at night with MEPITAC the only tape that does not irritate my skin.....

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