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new user, I have the full dry eye package

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  • new user, I have the full dry eye package

    Hello, I am a 27 years old guy who suffers from basically everything I read on this forum.

    floaters
    STRONG photophobia
    loss of meibomian glands
    burning
    dryness

    Everything I am doing at the moment feels like it does nothing or little to nothing:

    _supplements: omega 3, collagen, hyaluronic acid, about to try probiotics, read somewhere that they may help

    _diet: I recently abolished alcohol, carbs, gluten. I also drink like crazy since years and doesn't help much. Actually, I think all this water gave me a very bloated stomach that won't go away now

    _eye drops: tried everything, no luck, but at least I stopped using ones with preservatives since the general consensus is that they are bad so I now use the preservatives free ones and also other drops that are supposed to reduce inflammation, everything recommended/prescribed by doctors

    _hot water: I find relieving taking hot showers, staying in wet environments etc, tried warm compresses and they did not work

    _glasses: I am now the guy who ALWAYS wear sunglasses, I must use them everywhere including home, by now I can stay without them only at night and if I'm outside with no strong/normal artificial lights. Driving is starting to get difficult. Photophobia is maybe my problem number one, then dryness/discomfort (I wake up at nights regularly because of it), then floaters

    Also tried: a foam that one of the many doctors I visited prescribed me, I had to wash my eyes (closed) with it. IPL. Lipiflow. Every eye drop that exist. Spent thousands of euros on drugs, visits, gasoline to get to those incompetent doctors. I can afford it but it's no fun and more importantly it's all a waste of time and it doesn't work!!

    My right eye is especially bad, it's a mess full of floaters that I can see even if I look at the screen of my computer, dimmed completely, while wearing sunglasses (yea it's THAT bad), it is do dry that I have to use eye drops constantly, it's the main reason why I have to use sunglasses at home (the left eye can still handle indoor lightning without sunglasses just fine), it's so inflamed that it's always half closed by now and I'm starting to lose eyesight too on that eye only!

    It's not like the leftone is that much better, but at times I wonder if wearing a patch/bandage on my right eye for a month or two could heal it a bit.

    I am sorry for the little wall of text, pretty sure you read similar stuff every single time you browse this forum, I still have hope that somedays someone will connect the dots and lead me towards the right direction... but at the moment I feel like doctors just don't even care enough and they all just give me standard stuff/procedures and are not interested in an holistic approach. I tried telling them my story several times, a lot of little/not so little things that have or had to do with my eyes (took finasteride for several years and I believe it had an effect on the eyes, when I was younger I used to have tough times when I was crying a lot every single day and I fear this may have damaged the eyes a lot, I try to find correlations with stressful periods/depression and aggravating symptoms... the general answer is "ok I see. Here at xyz we do this, this or this treatment". Very disappointing and a waste of time and money)

    Unfortunately I spend many hours in front of screens both in my free time and for work reasons. I can do something for the former but not so much for the latter, but if I had the certainty that screens are a major issue and I would feel MUCH better without them, I'd drop them in a heartbeat, even if that means staying without a job at all.

    I also strongly suspect I have Sjogren since I also have very dry mouth and throat all the time and I basically must sip water all the time and when sleeping I must keep the nose under the blankets so I breath hot, humid air. I also suffer from weird fatigue when doing even moderate physical activity despite being young and otherwise healthy. Of course no doctor told me I have this stuff because they wouldn't even care to connect the dots, but it would be pointless anyway since I read that there's no cure for Sjogren too, so who cares if I have it or not.

    I don't know what else to say... I read this forum a bit in the past, but not too much... I want to read it further and try the stuff you tried too. For now I want to try probiotics, I want to keep my gluten free diet, I want to try restasis, I'd like to try also testosterone drops or something like that, and I would love that laser stuff for removing the floaters... these are basically the stuff left to try and then I could say that I tried basically everything. also if you could recommend me, here or in private, any good doctor anywhere in Europe, that would be amazing.

  • #2
    Dry Eye Centre in London is a good place to start, if you can get there. There are also places in Alicante, Spain that are supposed to be good.

    What are your glands like? Have you had many tests?

    Comment


    • #3
      You sholud get a full blood test to discart any autoinmune disease, you need first a clear diagnosis to take the right action treatment.
      I recommend you take a Maqui berry supplement twice a day that will increase your tears (in spain i take MaquiConfort), use a night oinment and during the day Hylogel and Lipolac gel (carbomer) 3 times a day. I also drink juices and a add Maqui powder. For the oily layer i started taking Visaid Lacrima, witch surpringly work better than other brands i tried.
      Im sure you must have some dry eye specialist in Italy, but just make sure is really focused on dry eye and cornea. I tried 2 IPL and the best for me was optima from lumenis.
      For screen you should use blue light filter and some app to make dark all websites, that helps a little, otherwise I couldnt read much. Take care!

      Comment


      • #4
        Originally posted by marchrius View Post
        Hello, I am a 27 years old guy who suffers from basically everything I read on this forum.

        floaters
        STRONG photophobia
        loss of meibomian glands
        burning
        dryness

        Everything I am doing at the moment feels like it does nothing or little to nothing:

        _supplements: omega 3, collagen, hyaluronic acid, about to try probiotics, read somewhere that they may help

        _diet: I recently abolished alcohol, carbs, gluten. I also drink like crazy since years and doesn't help much. Actually, I think all this water gave me a very bloated stomach that won't go away now

        _eye drops: tried everything, no luck, but at least I stopped using ones with preservatives since the general consensus is that they are bad so I now use the preservatives free ones and also other drops that are supposed to reduce inflammation, everything recommended/prescribed by doctors

        _hot water: I find relieving taking hot showers, staying in wet environments etc, tried warm compresses and they did not work

        _glasses: I am now the guy who ALWAYS wear sunglasses, I must use them everywhere including home, by now I can stay without them only at night and if I'm outside with no strong/normal artificial lights. Driving is starting to get difficult. Photophobia is maybe my problem number one, then dryness/discomfort (I wake up at nights regularly because of it), then floaters

        Also tried: a foam that one of the many doctors I visited prescribed me, I had to wash my eyes (closed) with it. IPL. Lipiflow. Every eye drop that exist. Spent thousands of euros on drugs, visits, gasoline to get to those incompetent doctors. I can afford it but it's no fun and more importantly it's all a waste of time and it doesn't work!!

        My right eye is especially bad, it's a mess full of floaters that I can see even if I look at the screen of my computer, dimmed completely, while wearing sunglasses (yea it's THAT bad), it is do dry that I have to use eye drops constantly, it's the main reason why I have to use sunglasses at home (the left eye can still handle indoor lightning without sunglasses just fine), it's so inflamed that it's always half closed by now and I'm starting to lose eyesight too on that eye only!

        It's not like the leftone is that much better, but at times I wonder if wearing a patch/bandage on my right eye for a month or two could heal it a bit.

        I am sorry for the little wall of text, pretty sure you read similar stuff every single time you browse this forum, I still have hope that somedays someone will connect the dots and lead me towards the right direction... but at the moment I feel like doctors just don't even care enough and they all just give me standard stuff/procedures and are not interested in an holistic approach. I tried telling them my story several times, a lot of little/not so little things that have or had to do with my eyes (took finasteride for several years and I believe it had an effect on the eyes, when I was younger I used to have tough times when I was crying a lot every single day and I fear this may have damaged the eyes a lot, I try to find correlations with stressful periods/depression and aggravating symptoms... the general answer is "ok I see. Here at xyz we do this, this or this treatment". Very disappointing and a waste of time and money)

        Unfortunately I spend many hours in front of screens both in my free time and for work reasons. I can do something for the former but not so much for the latter, but if I had the certainty that screens are a major issue and I would feel MUCH better without them, I'd drop them in a heartbeat, even if that means staying without a job at all.

        I also strongly suspect I have Sjogren since I also have very dry mouth and throat all the time and I basically must sip water all the time and when sleeping I must keep the nose under the blankets so I breath hot, humid air. I also suffer from weird fatigue when doing even moderate physical activity despite being young and otherwise healthy. Of course no doctor told me I have this stuff because they wouldn't even care to connect the dots, but it would be pointless anyway since I read that there's no cure for Sjogren too, so who cares if I have it or not.

        I don't know what else to say... I read this forum a bit in the past, but not too much... I want to read it further and try the stuff you tried too. For now I want to try probiotics, I want to keep my gluten free diet, I want to try restasis, I'd like to try also testosterone drops or something like that, and I would love that laser stuff for removing the floaters... these are basically the stuff left to try and then I could say that I tried basically everything. also if you could recommend me, here or in private, any good doctor anywhere in Europe, that would be amazing.
        Hi there from another newbie. You do have a lot to deal with. Eye doc asked whether I have Sjogren's, so I got tested, no inflammation or autoimmune. She was nasty about it too, said do you want to bury your head in the sand? Like she is saying I have it. Well I don't. I am a veteran of Restasis and current Xiidra user - no result with either, although the doc says to continue just in case, I don't mind since it doesn't cost me much. Both meds clearly state not all patients benefit. I have tried everything, Lipiflow with no results, at all, preservative free OTC drops, warm compress/mask, punctal plugs (twice). I have not tried that light therapy thing and have not tried that thing where you have custom autologous eye drops made from your blood. Expensive, and since nothing else has worked I am not going to spend the money. Dry eyes can become a money pit. Doctors try to make you think other people are being helped but not you. I just think it's hard to fix. Anyway, good luck, hope you find a good doctor in Europe.

        Comment


        • #5
          Hi all, thanks for your replies, I much appreciate that you spent your time reading my story and gave me advices.

          My glands aren't good, I have had meibography in May and it showed 72% loss on right eye and 60% on left eye. That was before most of the treatments I had afterwards, mainly IPL and lipiflow. I will get another meibography soon to see if something has changed. To be honest with you, I feel no different from months ago so I doubt that the situation is improved. Also, to my understanding the lost glands don't come back in most cases, which is really disheartening but I'm not losing hope yet, it would still be possible to live a semi-normal life if I felt just a little better than this.

          I think I tried most places considered "good" in Italy, I am just getting this second meibography a.s.a.p., maybe also a visit to a doctor recommended by a friend of a good friend of mine who has a very serious problem that involves dryness too and is getting some good results, and then I will try abroad like you suggested. Only the supposedly best of the best, and let's see what they say.

          @bnc90 thanks for all the tips, I will definitely look into these! Never heard about this maqui stuff. Already doing/tried some stuff that you mentioned

          "Doctors try to make you think other people are being helped but not you" my friend this is exactly it, you nailed it... I wish you the best too, I believe it's not impossible, we just have to try and try and try.

          Comment

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