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  • Feeling scared :(

    Hi - I was diagnosed with dry eye several years ago, but a few months ago my doctor started me on Restasis due to diplopia (double vision) in one of my eyes. The symptoms weren't too bad, manageable with drops, but a few weeks ago my dry eye symptoms suddenly got REALLY bad. I'm a little freaked out about this because I'm not sure what the long-term outcome will be and how I am going to cope and manage with this. I believe my condition is due to perimenopause and a reduction in sex hormones, but my doctor is trying me on Restasis (which I've been on for 2 months with no improvement yet). I have reduced tear production and meibomian gland dysfunction - so evaporative eye issues with no replacement tears. I'm freaked out partly because I am scared my tears will completely dry up! I'm also going through some pretty significant family-related stress which I imagine is contributing to this. For those of you who have this - - do you still produce tears when you cry or are those gone too? The doctor isn't optimistic the Restasis will work, then where does that leave me? I am also taking omega 3 FAs for the meibomian gland dysfunction, but what can be done for the tear glands? Any words of encouragement will be most appreciated - especially as it relates to the tears totally drying up and not being able to cry ever again.

  • #2
    It would be helpful animallover to know what you have tried so far beyond restasis, what has helped, what has not so that we are not preaching to the choir about what you should or should not do/try.

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    • #3
      I have tried over the counter drops both preservative free and preservatives. Frequent use of the drops make my eyes more uncomfortable and when I start them I have to use it every 15 min for comfort. So I got moisture chamber glasses (which help some, but they don’t fit well and are awkward to wear in public). I’ve also been using a warm rice bag twice a day and that helps some, but doesn’t last. I live in a cold climate in Wisconsin and the heating is challenging. I’m afraid I’ll never want to go out or travel ever again and my job relies on travel. Thank you for asking. With this condition do we lose all our tears? I’m not optimistic that the Restasis will work.

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      • #4
        What kind of testing has he done to diagnose your condition? Has Sjogren's been ruled out or has he just given you the 'yep blepharitis' routine. Is he/she a specialist in dry eye or a regular optometrist?

        I have Sjorgen's and yes I do produce tears when I cry, lots of them but this kind of tear is different from a regular wetting tear...

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        • #5
          I read your reply on Christmas and it was the best gift. Knowing I can still have tears if I get upset is reassuring to me (I don't know why that matters so much to me, but I am relieved regardless - thank you!). I've had the Schrimer tear test (about 5 mm for both eyes) done and the tear break up time test (5 seconds). The doctor (regular optometrist) also examined my lids with a slit lamp to assess the meibomian glands (which were thick and some blocked). I've also been seeing double in one eye which my eye doctor is attributing to the dry eye. My internal medicine doctor ran Sjorgan blood tests (I don't know the specific name of all of them), but those came back negative. I've been taking restasis for about 2 months and the drops do help with the inflammation, but I don't feel an appreciable increase in tear production (sadly). I've also been taking increased omega 3 for the past several weeks and using a rice hot compress twice a day (if I do it three times a day my eyes feel dryer). I tried the wet warm compress, but that irritated my eyes more. I put Systane gel in my eyes at night and sleep next to a cool mist humidifier which helps a lot. Then I use the Systane non-preservative drops as my eyes feel burning (it helps for about 3 minutes, then my eyes feel burning again). I'm not sure how often is appropriate - my doctor said 4 times a day, but honestly I could be using them every 15 minutes (I don't use them that often, but I would like to if I thought it would help, however, I have found my eyes get more irritated the more frequently I use the drops). I just ordered some moisture chamber glasses (saw another post of your's recommending them). How do you cope with the burning all the time? Will the moisture chamber glasses relieve that? I'm worried that if the burning is bad now, what will happen when my schrimer tear test drops to zero? I have no idea what to expect and that is what makes me scared and I think my anxiety over this is making things worse. Thank you so much for your help - I am truly grateful.

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          • #6
            Hi animallover
            compress: if you dont feel good afterwards, likely something wrong (duration, heat or inflammation issue).

            Inflammation: If you have inflammation, put it under control is super super important (with good diet/ lidhygiene - avoid sugar, processed food etc). Heat is bad, if you have bacterial load.

            Combination of GLA + omega 3 works more effective in terms of inflammation, oil quality and tear production. Not all supplements are the same. if you are a woman, bio, cold pressed Flaxseed oil is good/safe.

            Lid cleanser: Many doctors in USA recommend Avenova with pure HOCL, especially to kill bacteria. many educational videos at YouTube.

            Restasis: could take 6 months for some people.

            Sjorgan blood tests: there is test, Sjo, can detect about 4.5 years earlier than the normal blood test, seems only available in USA.

            Gland images: if you have not taken images, good to take to ensure no atrophy etc.

            Good luck!
            Last edited by MGD1701; 30-Dec-2017, 07:03.

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            • #7
              Thank you for the information MGD1701 and farmgirl! I will ask my doctor about the Avenova and the Sjo test. I don't have a lot of dry flakes or crusts around my lids. I used to have a meibomian gland cyst a little over a year ago, but that went away. I've asked my doctor for a referral to an ocular surface specialist, but there doesn't seem to be a lot of options around here. I just got my moisture chamber glasses (had to get them fitted to me and thankfully I was able to find a glasses company that could do this), these are helping a lot (even though they do look a little funny). I did just learn that the company that makes these (Ziena) will be launching a new line early next year. I hope for myself and I wish all of you reading this relief in the New Year!

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              • #8
                Hi Animal lover:

                Three things:

                #1: I also tested negative for Sjogrens with the blood work which is more common than not. The gold standard is a lip biopsy which for me was positive so it might be worth it to pursue if you really want to rule it out conclusively.

                #2 have you ever tried punctual plugs?

                #3 I am attaching a link to a post I wrote a year ago which may give you an aha moment. The constant burning is inflammation caused by the dryness and possibly irritation from what you are putting in your eyes and/or excessive computer use. Limit as much as possible your use on electronic devices.

                http://www.dryeyezone.com/talk/forum...bout-eye-drops

                Above all hang in there you will figure it out. I no longer have the constant burning only in the eve if I am on the computer for an hour or more or get really dried out like if I am on an airplane with no moisture chamber glasses. Has you doc ever prescribed a course of steroids. Might be worth it to ask. If he /she does make sure they are non-preserved (bausch and lomb minims prednisolone) since you are so sensitive to what goes in your eye.......cheers...F/G

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