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Hello...newbie from Canada

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  • Hello...newbie from Canada

    Hi. I have been a visitor here for a year or so as I bought the tranquileyes goggles here. I am 43 and have Sjogrens syndrome. I figured this out a year and a half ago even though bloodwork is inconclusive. Eyes are so bad at night especially...I wake up from the dryness and have to put drops in before bed and twice in the night. Extremely light sensitive too...cant turn on a light in the morning...thank goodness for dimmer switches! I know you can relate. Driving into the sun is impossible and my sun visor broke on the car so I cant move it to the side when the sun is coming in that way. Strange how these things become indispensable. I wear non prescription glasses all the time...vision is fine but the air shield helps. A sense of humour also helps lol as I also wear these embarrassing shop glasses when I can get away with it ( ie alone or with kids around). Great fashion statement. I am walking humidistat at home in the dry Canadian winters...I can tell when it drps below 50 in the house and end up boiling pots of water on the stove. It is nice to know I am not alone although it feels that way amonsgst the people I know.
    Some things that have helped considerably especially the last three months: cutting out wheat, fish oil, bioidentical progesterone cream ( not on eyes but on skin elsehwere) and sea buckthorn oil . I take Seabuckthorn capsules once or twice a day and put a bit of the seed oil on my eyelids. I have gone from a seven out of ten in terms of discomfort to a 4 or a 5 now so I am sharing this to hopefully help some of you. Hard to tell which if these has been responsible or if it is all of it.
    I am now about to try the progesterone/ testosterone eye drops from Leiter's. My opthamologist wrote me a prescrip at my request and I want to try it. I do think it makes sense that hormones play a part especially seeing a difference from progesterone cream. I tried estriol and it made them worse and I also notice cyclically that when estrogen is high my eyes are worse. So I am waiting for them to arrive and wanted to know how any one else fared with these. I know there is one poster here who is trying them.
    Also wondering if anyone else is having success with sea buckthorn. I was confused to see Dr Oz writing an article saying that sea buckthorn is inflammatory when he was the one pushing this originally. It appears as if he is trying to sell a purified Omega 7 which is straight palmitoleic oil as opposed to palmitic and palmitoleic oil which are in sea buckthorn. Apaprently palmitoleic is the anti inlammatory oil so maybe he is onto something but is sea buckthorn truly a bad choice? I really do feel an improvement since taking it.
    Thanks for reading this everyone and hang in there.

  • #2
    Hi Debbie
    i can certainly relate to all you said. especially about the sun and dry canada winter air and trying to drive! and dimmer switches!! I just wanted to mention about the dry eyes at night. One of my doctors suggested the use of muro128 (ointment). I used to wake up in complete dry-eye pain a couple times a night but now I put a bit of this ointment in my eye and i don't need any other drops during the night. The muro 128 is not a prescription but you may have to ask for it at a pharmacy as it isn't usually with all the other eye drops. Hope it helps you.
    -Mo

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    • #3
      Hi Debbie,

      I can definitely relate the the non-prescription glasses, I also wear them all the time. Also the photophobia. Last time I tried to drive on the parkway the sun was low & right in front of me, I couldn't read the road signs at all and missed my exit. MGD (posterior blepharitis) is my problem.
      I'm wondering how you know you have Sjogrens. I was certain I did but all tests negative and the rheumatologist I saw told me I don't have the history for it even though in addition to dry eyes my mouth sometimes feels dry and my finger joints sometimes swell a little. Also my eye doctor told me Sjogrens patients have no reflex tears, which I have.
      Things that helped me: cutting out peanut butter, processed food, sweets & trans fats. Also taking NAC and Azasite drops.
      I'm very interested to know if the testosterone drops work. I just had the testing done and mine is very, very low. Good luck!
      -Blu

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