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3 years on - never give up.

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  • 3 years on - never give up.

    Hi all

    I have not posted on this forum for probably over a year. (used to post under the name Susie but for some reason Ive had to re-register, must have expired or somthing!)

    Anyway, in short I am in my late twenties and live in the UK. My dry eye nightmare started around 3 years ago and at the time I put it down to some medication I was taking. In hindsight - although said medication certainly would not have helped matters, I now do not believe it was the sole cause of my dry eye problems. I have always had an intolerance to contact lenses so it likely I had a borderline dry eye anyway but taking meds probably pushed me over the edge in terms of symptoms.

    Dry eye took over my life for the best part of a year - when it was at its worst. I was obsessed and absolutely despaired. I thought my life was over and in a way, it was. My social life didn’t exist anymore, I became depressed, withdrawn and barely had the motivation to get out of bed most days. The only thing I was motivated to do was find something that could end my misery as I just could not imagine spending the rest of my life with dry, red, sore eyes. When I say I tried pretty much everything I mean pretty much everything! All that was available to me in any case. In the UK we don’t have certain options open to us such as restasis etc and I could not find a doctor who would let me try the blood serum drops – although I tried many times! I have tried 99% of the drops out there and even travelled to the US to see a doctor there for a different perspective and also with a view to obtaining restasis.

    The main reason Im posting is to say just don’t lose hope that things will improve. The one thing I have learned is that no two peoples dry eye will be the same – we all have different causes and will all respond slightly different to the various therapies.

    At my worst – I was using drops every hour (every half hour on a bad day) ointment at night including wearing tranquil eyes. I was also using restasis for a time and had various courses of steroid drops (pres-free). Not to mention hot compresses/cold compresses several times a day. Had 3 different types of plugs (and various dramas with plugs which I wont waffle about here!) and I was also on the verge of cautery. Again this was something my rather conservative doctor was reluctant to do as he firmly believed I needed to give things a little more time.

    Where am I at now? My conservative doc that I used to moan about probably did know what he was talking about after all - and Im certainly glad I didnt rush into the cautery. I wouldn’t go so far as to say Im cured – I will probably always be prone to dry eye and irritation as I do suffer with allergies etc. What I will say is I feel like I am almost back to normal. For the most part, my eyes feel comfortable. The only thing I am doing for them at the moment is putting in drops at night and first thing (some days!) when I get up but that’s really maintenance, I probably could get away without this all the time but its become part of my routine and as long as my eyes feel ok Im happy to do it – takes two seconds! Sometimes less can be more.

    I don’t have a secret my eyes have just fortunately improved with time and it no longer takes over my life. Perhaps I have also adapted to it a little I don’t know. Either way, I am in a much better position than I was when I first started this nightmare. I know it will not be the case for everyone, it depends on so many factors. But never lose hope, things can get better, its been one of the most challenging things Ive ever had to deal with and I truly understand the desperation you feel when nothing seems to help.

    Just dont give up.

  • #2
    Excellent!

    So happy to hear that things have gotten better for you...I am certain yours is the kind of story that keeps the rest of us going.

    Continued progress and success to you!

    Allie

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    • #3
      I love this post... I copied it into "Our dry eye triumphs" so more people will see it! Did you use to post as SusieD??? I remember you. And I am so glad to hear that things are going better.
      Rebecca Petris
      The Dry Eye Foundation
      dryeyefoundation.org
      800-484-0244

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      • #4
        Hi Susie! I remember you too, and so glad to hear you are doing better. I hope you continue to improve and thanks so much for posting your encouraging story!

        -Shells

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        • #5
          If it is SusieD, congrats. I know you were finding things tough.

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          • #6
            Hey Suzie,

            If you don't mind me asking, what was the drug?

            I have dry eyes as a result of accutane. be great to hear someone improved on their own.

            Comment


            • #7
              Great news!

              Wow, love to hear stories like this! I'm a little more than 3 years plus and just had (yet another) turn for the worse. My doc has taken me off of everything...restasis, plugs, most drops. All I'm doing now is using Refresh and compresses. It's been a couple of weeks of hell.

              Susie, your story is very inspiring. It gives me hope...when sometimes I feel like there is no more hope.

              Thanks for sharing.
              Kyle

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