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  • Please Help!

    I am having trouble and need advice. I am thrilled to find this website with more information in one place than I have found in the eleven years since I was diagnosed with Sjogren's Syndrome.

    I'll attempt a history: autoimmune tendencies and all but diagnosed with lupus but for reduction of symptoms at the ceasing of prescriptions. Sjogren's diagnosis at age of nineteen while being screened for plaquenil treatment. Moved to rocky mountain area seven years ago which greatly helped joint pain but obviously worsened dry eye.

    Current situation is this: I am at my wits' end with what to do with my eyes. My moisture wicking is at about 11 which isn't terrible but dry. My worst problem is that my dryness wakes me up at night it gets severe during the night. I am a busy mom and sleep soundly so it takes a lot to wake me! I am also concerned about long term damage as a result of dryness. I think I've tried about a dozen types of drops with some minor temporary relief.

    Two years ago I had temporary plugs inserted to see how I felt. It was like a Carribbean paradise vacation for my eyes, but alas, within a week and a half I awoke at 3 am in the desert as they dissolved. We tried "permanent" plugs (hahaha) upper and lower and they drove me crazy. I went back after two days and my Dr. (who is very considerate) said he'd hate to bump into me at the store blinking spastically like that so he tried a different type of plug that was not a "cap". Within months these disappeared and so he tried the smartplugs which followed suit and also fell out. I said how wonderful my eyes felt while the plugs were in and I think maybe they thought I was crazy and didn't believe they were falling out but the numbers also show my point. We tried another set of temps to see how I felt but they worked their way out also even up to a week after insertion which I could visibly see: little threads sticking out of the duct and scratching against the whites of my eyes. Needless to say that wasn't satisfactory. Based on this experience the Drs said I am not a candidate for plugs.

    So I've been on restasis for about a month and have noticed little improvement. The stinging and blurring is annoying but would be worth it if I had actual results but it hasn't helped much if at all.

    I use a severe formula gel (genteal) and a warm eye pillow at night which helps a bit.

    Is there something I'm missing?

    I wish I could just have all four permanently seared so I can stay at that Carribbean Paradise and not have to think about my eyes so much and be awakened in the night by a feeling of sticking my head out of a car window travelling at 60mph with my lids propped open.

    Any help?

    Thanks in advance.

  • #2
    I think you'd be a great candidate for punctal cautery. You hinted at it with your "seared" reference. Do a search, there's a bunch of threads on here about it. Basically the tissue in your puncta is burned and closed. It reopens in some people, but then is usually re-cauterized.

    Good luck.

    Comment


    • #3
      Originally posted by dryeyewhy
      Current situation is this: I am at my wits' end with what to do with my eyes. My moisture wicking is at about 11 which isn't terrible but dry. My worst problem is that my dryness wakes me up at night it gets severe during the night. I am a busy mom and sleep soundly so it takes a lot to wake me!
      Is there something I'm missing?
      Hello, welcome, and I'm sorry for your struggles. I had to cancel the purchase of a home in Northern Colorado because of my dry eyes, so I understand a bit of what you must be experiencing.

      What do you do for humidification in your home?? Do you have a humidity meter (hygrometer), especially in your bedroom--like, on the nightstand by where you sleep??

      If you are NOT running a separate humidifier in your bedroom at night, my first recommendation would be that you buy one TODAY (weather permitting ), and start using it at night. You'll want to experiment, but I might suggest you try to hit something like 55 or 60% humidity, then shut it off when you leave the bedroom in the morning (to allow the room to 'air out').

      I'd do this EVEN IF you have a whole-house humidification system. If you DO NOT HAVE a whole-house humidification system, I would ALSO recommend that you look into having one installed. Not too expensive. Huge difference in daily comfort.

      I wish I could just have all four permanently seared so I can stay at that Carribbean Paradise
      I probably would hold off on that until you've tried other measures. Plugs: okay. Cautery ("searing"): I would wait.

      All the best ... and Happy New Year!

      Neil
      Who STILL wishes he were living in Northern Colorado....

      Comment


      • #4
        just a welcome from someone who understands

        Hi,
        Sorry you had to find us, but glad you did. I have Sjogrens as well. So do a few other of our members. I just wanted to tell you about www.sjogrensworld.org

        It's a forum for people who have Sjogrens and it is probably the best one I've found. And I know it is sometimes hard to research all of this out.

        I'm just wondering...you mention that you manage pretty well during the day..is it possible that your eyes aren't closing all the way and maybe you could benefit from the eyeeco night time goggles? There are lots of posts about these and I think Rebecca has them in the store here also. I use them.

        Again, welcome. This is a great group.

        Billye

        Comment


        • #5
          Hi, Dryeyewhy!!!

          Sorry about all your troubles, but you've come to the right place!

          I'm cauterized in all four punctae. You may need some advice on a doc who can do a good job of cauterizing. I had mine done more than three years ago and the are still sealed. Sounds like you've be very happy this way. I do blot a lot more often than I'd like, but it's better than the alternative.

          I would also recommend a humidifier like Neil suggested. We installed one on our furnace and I run one beside my bed at night. The master bedroom is like a rain forest. It's not the hubbies favorite habitat, but he copes and doesn't complain. He no longer uses the ceiling fan either which was another of his favorites.

          Lastly, I would recommend one of the eye drops sold on this web site for nighttime use. Dwelle may work nicely for you. It's rather heavy, but could get you through the night. I've concluded with confidence that when my nights go better with the high humidity and waking to instill drops, my days go better. I am certain there is damage done at night when my eyes get bone dry.

          Best of luck with all this. I'd stay with the Restasis for a good long while if you can stand it. Lots of people have done well on it, but only after a long time...a year at least.

          Keep us posted.

          Diana
          Never play leapfrog with a unicorn.

          Comment


          • #6
            Welcome

            Welcome to this site. I am sorry to hear that you are going through such a difficult time. I had my four puntae cauterized and I use protective glasses to avoid having the wind bother my eyes. Since I live in Central America which is very humid I can cope but I wouldn't dare to travel to a dry place because I would be miserable.

            You mentioned you were diagnosed with autoinmune problems. I been doing a lot of research and I've read that in some cases you can improve your autoinmune problems if you get rid of the culprit, for instance metal dental fillings, breast implants, etc. followed by a detox regime. You could probably explore a little in that area. I really hope this information can help you.

            May this new year find you in better health

            J

            Comment


            • #7
              Sorry you have to be here but WELCOME

              Hello there.. I know exactly what you are going through. My eyes are also dry at night,and I definitely worry about the damage being done. I have had dry eye for awhile, but Lasik made it worse, especially at night. I definitely would recommend cauterization. I had it done on my lower ducts, and it helped greatly. I wasted my time with plugs. They are very aggravating, and I would have saved a lot of money and time, if I had just had the cauterizing done first. It was very simple and pretty much painless. I hope you find something that works for you. When I read the daily routine of some of these people on here, I realize that there are a lot of things that I am not doing, such as supplements, compresses, lid scrubs. I would recommend reading back through the threads and you will find so much information. Good luck

              Comment


              • #8
                Just a reminder, there is also LOTS of information on our main website (www.dryeyezone.com). The "Top 10" list in the Encyclopedia is a good place to start.
                Rebecca Petris
                The Dry Eye Zone

                Comment


                • #9
                  Welcome

                  You mentioned you were wearing pads on your eyes at night -- have you tried some moisturizing goggles such as Tranquileyes? http://www.nexternal.com/tdec/Category27

                  I think the humidifier should help too.

                  You could also try an oil-based drop at night (like Soothe or Refresh Endura) to help stop the tears you have from evaporating.
                  ---
                  Blepharitis leads to MGD causes dry eye?
                  Dry eye drops cause eyelid irritation exacerbating Blepharitis?

                  Comment


                  • #10
                    Thank you all for advice

                    Thank you for your quick and helpful responses. We do use a humidifier at night in our room and also made sure the house we bought had hot water heat (most here are forced air).
                    I right away ordered the tranquileyes and tried the dwelle drops. AMAZING!
                    My Dr. was very impressed with the goggles and was writing everything down as I was showing it to him (my dh wanted to know if the Dr. was going to pay ME this time!) I am sleeping well through the night and guess what? We tested my moisture at the Dr. and it was the best it has ever been (including when I had in my plugs) so the tear QUALILTY and the dwelle drops have so much to do with that. We'll see how the next few weeks go but I am immensely encouraged and thank you all!

                    Comment

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