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37 year old with 18 years of Aqueous-deficient dry eye and counting!

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  • 37 year old with 18 years of Aqueous-deficient dry eye and counting!

    Hi!

    My name is Mandy. I am a 37 year old female living in Madison, WI.

    I have researched and researched dry eyes to ad nauseam and this site has brought me the MOST information and comfort throughout the past few years when my dry eyes went from mild to severe. Thank you, Rebecca for this wonderful service! And thank you to everyone else who has contributed and provided wonderful information/insight into this infuriating chronic condition.

    My condition started when I was 19 (1997) and just finishing my sophomore year of college. I recognized something was wrong as my contacts would just SUCTION to my eyes and no amount of contact lens drops or saline would help. I was soon diagnosed with dry-eyes by a dr. in Northern Wisconsin (where I was living that summer). During my junior year at the University of MN I saw a corneal specialist at the University who performed laser cautery performed on all of my punctum, which provided some comfort. I do not remember what my Schirmer's results were at that time. During this time I did a lot of research on dry eye at the University medical library where I read about Sjogren's Syndrome. I visited a rheumatologist who ruled out SS for me.

    Over the next few years I jumped from eye drop to eye drop to seek comfort, but nothing provided long lasting comfort. I used a humidifier at work and home. I used warm compresses morning and night. Around 2002 my friend's father (a now retired opthalmologist) put punctal plugs in 2 of my ducts (oddly one in the upper left and one in the lower right as he said the others still looked mostly closed due to the laser cautery). He also had me try lacriserts (which I found incredibly uncomfortable and not particularly lubricating). Over the next several years I was reasonably comfortable or was just able to accept that this was my fate. He also prescribed Restasis which I have been using 2x/day since 2002 with minimal relief. As stated before, during this entire time I cannot recall what my schirmer's were.

    In 2004 I went back to school to get a masters degree and in 2006-2008 went to law school in New England. During this time I saw Dr. Greiner in Boston who would do lid expressions on my eyes...although it didn't seem to help too much (as it really seems that MGD is not the cause of my dry eyes) I continued to see him for a few years. I also used Soothe eye drops during this time and seemed to notice some help from them (which I get NO help from now).

    I moved back to Wisconsin in 2008 and seemed to have fairly minimal symptoms for awhile. I was even able to wear contact lenses again for up to 8 hours/day. I started seeing a specialist in Madison in 2010 who tested my eyes and my schirmers were 7 in the right eye and 8 in the left during this time period. Whether that was higher or lower than before I have no clue! I saw her a few times and then stopped until 2013. At the 2013 visit she prescribed me with azasite which I would use 1x/month for a series of 7 days (2x/day the first two days followed by 1x/day for five days). During this time I also started taking Omega 3 pills on and off

    In the summer of 2014 my symptoms REALLY took a turn for the worse. I worked with my optometrist at this time (due to change in insurance I didn't have a referral to the othalmologist) to try different punctual plugs in my bottom puncta as well as the top. Plugs in the top puncta caused too much eye irritation so my optometrist referred me to the same opthalmologist I saw previously. This time she increased the amount of Omega-3s I was taking and also discussed potential other options., including a trial of dissolvable plugs in my upper puncta. These did not cause overflow tears and in late April of this year I had my upper puncta cauterized. I am noticing substantial increased comfort with this and even SOME, although quite small, tear overflow (in both eyes) although it has only been a few weeks I hope this continues as long as possible. At my last visit she prescribed DHEA drops, 2x/day, from which I don't think I am really noticing much improvement from using. I do notice SIGNIFICANT burning for about 10 minutes after putting them in, but then my eyes feel fine (not better, not worse).

    Through my research on this web site I also decided to purchase nighttime moisture goggles (which really helps since my partner LOVES to have the fan blowing on his face when he sleeps) and day time moisture chamber glasses (which are AWESOME as I LOVE outdoor sports). At this time I have only purchased these with tinted lenses, but have a feeling before winter I will need to get some with clear lenses for the winter months. It took me MONTHS to find the right fit for moisture chamber glasses (none came EVEN close to providing a seal) as well as a lab that was willing to make my prescription in a wrapped goggle. I ended up with the Wiley-Gravity with the Rx insert and find they are fairly close to tight seal.

    Oh, I find that most ointments irritate me and Refresh Celluvisc is the strongest I can seem to use.

    I find mediation and yoga VERY helpful/

    As for work, work is hard as I sit at a computer all day. I can't imagine doing this for the next 27 years (until I can retire) with eyes like this. Come on, Science!

    I look at my phone WAY too much. I have started using audiobooks more and realize I am going to have to make many more changes in how I "read."

    So, that is where I am at. Thoughts, comments, suggestions, questions...all are welcome!

    I look forward to more conversations with you all!

    So, that is where I am. At this point, with all 4 puncta closed, I have more relief than I have in ages.

  • #2
    Hi Mandy. I am about your age and also suffered from dry eyes, but not nearly as long as you have. I am sorry to hear about your experience and completely understand what it feels like to suffer from dry eyes and have to use your eyes all day for work. I just signed up to this site and recently added a post about what has helped me pretty much cure my dry eyes. Perhaps the posting could give you a few new ideas. You can read it here:

    http://www.dryeyezone.com/talk/showt...doesn-t-for-me

    I do think that the best solution for me was a change in diet and changing the more "internal" factors of the problem instead of focusing on the more superficial "external" factors. Hope this helps you at least a little.

    -Trajan

    Comment


    • #3
      It sounds like you are doing everything you can. Are you on doxycycline? I'm not sure it helps me, to be honest, but a low dosage (20 mg) may be worth a go. A low dosage may do less harm, and my docs have no concern over long term usage at the dose.

      Stress seems to really exacerbate my dry eye. Do you find that dry eye correlates with job stress? Glad to hear you are doing yoga. Anything to combat end-of-day frazzle helps.

      Like you, I would develop sensitivity to drops over time, and had to quit certain brands. I use no drops now.

      Comment


      • #4
        Hi Trojan!

        Thank you so much for your response! I do agree that external factors exacerbate the problem and so I am working on several of those and once I get them under control will hopefully find some reprieve!!! I looked at your post and feel that some of these items might be useful for me to try. I will let you know how it goes!! I am so glad you were able to find an almost cure

        Comment


        • #5
          Hi No Tears in ATL,

          I am so interested in the fact you use no artificial tears now. Was it a big transition. Do you have a zero Schirmers? I forgot to say I did try do you several years ago bit haven't for a long time. Maybe this is something I will ask my Dr. to add to see if it makes a difference. Are you Aqueous deficient or do you have MGD or both? Which is worse for you?

          Thanks for your post!

          Comment


          • #6
            Hi Amanda,

            I hope you’re doing well. I’m new to this forum. I have both aqueous Deficiency and MGD. I see that you have aqueous Deficiency. Please help! Any advice, should I buy the Restasis and give it a shot?

            Comment


            • #7
              Hi Heidi! I have tons of advice. Are you aware of the facebook page for the dry eye zone. It's called: DryEyeTalk - Patients Only. You should definitely join it. There are tons of people on there with tons of ideas and experiences. It's very helpful. You should also check out https://www.dryeyestories.com/new-blog/. The entire website is very helpful, but I have posted my story on there and what I have tried. Many others have as well. rebecca also provides incredibly useful information! Please let me know if you have any other questions after checking all of that out!

              Comment


              • #8
                Hi Amanda,
                ok great thank you! I will check that

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