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  • Hello from Sweden

    Hello everybody,

    Just feel like writing myself of a little bit. My name is Marcus, Iím 27 years old from Sweden,
    and i have had dry eyes (MGD) for over 6 years now. 6 years of hell, in a period of life which should
    really be something else.

    The first years I had hope and I thought maybe the next thing would be just the thing to ease my pain/condition, but the years have gone by and 6 years later the problems are probably worse
    compared to the first year.

    I'm a person (among others in here) who eloign myself from life, who cannot do what I want to do and when I find myself in situations where i used to find happiness with friends etc. I cannot be the person I want to be. I'm a person who can't maintain a look against other persons, I think that sums it up. No other words needed, how can one live like this? Self-esteem: Zero.
    Wind, cold, the sun, bad quality of air are some things that can ruin a whole day or for sure specific moments. 1-hour morning meeting in a meeting room and the whole day is ruined. Half an hour in a food store, the rest of the day is also ruined etc.

    The problems came after I started to work in an office in front of two screens 8-9 hours per day. Im still here since I don't think things would change with another screenfree work, maybe less suffering during the work but at the end of the day the problem would still be there.

    After this I have tried eyedrops (maybe 20-30 different brands), warm compresses, eyelid cleaning, Omega 3, IPL (2 out of 3 treetments), Lipiflow (6 weeks ago) and several other things like diet change etc. (after being on google for 6 years, trying to find a solution). Nothing of these things have had the slightest impact on the problem.
    Today I am going back to Swedens only specialclinic for dry eyes, i think I'm going to burst out in tears in front of the doctor since I feel like telling him what I really feel and that I no longer can live like this. I really had hope about the Lipiflow but it was just another punch in the stomach.
    I feel so alone in this, I want to let know people around my understand how much I suffer and the impact this has on my life not being able to be the person you want to be but it's hard to explain.
    Dry eyes, how bad can I be? Just take a few eyedrops. Right..

    Also been to a psychiatrist for the last year, she is great but changing my thoughts/actions does not solve the problem.

    Any hope out there? I desperately need some.
    Last edited by Hajen13; 14-Jan-2019, 06:57.

  • #2
    Hi Hajenthirteen first of all you are amongst friends here, we have or are where you are now.

    This is the common question asked but do you know what is the underlying reason for your dry eyes? What is the diagnosis? Do lack tears and/or do your tears evaporate too quickly? Do you have MGD and/or blepharitis? Have the docs checked for inflammation or demodex? So many questions.

    Until you get a clear understanding of the root cause or causes of your dry eyes you can't focus the treatments. I learned that the hard and expensive way.

    Comment


    • #3
      Hi can relate to your story I am in the same situation except that itís been going on for one year so far, not six. Letís hope we can find some answers here.

      A couple of questions in addition to the previous post:-

      - Have you had meibography to see if you have all your glands?
      - Have you been tested for thyroid issues?
      - Do you have itchy eyes? Have you been tested for allergies?
      - Are you on any other medication which may cause dry eye eg accutane, anti depressants ?

      Comment


      • #4
        Hi! quattroboy Thank you for the welcome! I dont have much data on the problem as i can see that many others on this forum have but i know that the problem is the quality of the tears and that not enough "fat" is being produced rather than the lack of tears. I just returned from the clinic, i asked about blepharitis and we did some sort of test which showed a very small possibilty for blepharitis. I got some new tissues for eyelid cleaning which are made specifically for blepharitis (just in case i got it) but as the doctor told me i dont have any obvious signs of blepharitis. No, the doctors have not checked for demodex as far as i know and neither inflammations. Is this something dryeye doctors in the states usually do?

        Hi! Alix Lets hope technology/research or this forum take care of our problems within short.

        - Have you had meibography to see if you have all your glands? No or not as far as i know.
        - Have you been tested for thyroid issues? Funny that you ask this question, when i spoke to the doctor today i asked him about the possibility
        of an underlying disease and he mentioned for example the thyroid among other things i should test. I will visit a clinic for these
        tests within short. Have you done a test for the thyroid?

        - Do you have itchy eyes? Have you been tested for allergies? Yes sometimes the eyes get very itchy and i feel the need to rub them, mostly when the problems are peaking. I have not been doing any allergic tests.
        - Are you on any other medication which may cause dry eye eg accutane, anti depressants? No medication at all and nothing special in the past either.


        Apparently im one of 4-5 persons out of approximately 3000 persons who don't respond to the classic treatment being done by this clinic in Sweden i
        was told today (no wonder that i feel lonely over here). Even though i don't feel any relief since the last time i did the Lipiflow the doctor thinks that it looks a lot better and more fat is beeing produced.
        He gave me a free third treatment for IPL today (did the first 2 treatments over a year ago), hopefully this will show some results. Feel a bit better right now
        afterwards..
        Last edited by Hajen13; 10-Jan-2019, 09:32.

        Comment


        • #5
          Hajenthirteen Can you get hold of Restatis ? Or even better, Xiidra? I am having to travel to the US to get hold of Xiidra to help me with my dry eye

          Comment


          • #6
            @Hajenthirteen The reason I asked about getting tested for thyroid issues is that this is the first thing the doctor said I should do when I went to see him about my dry eye problem, as this could be the reason behind it. The blood tests were quick and easy - they came back negative.

            I have the same condition as you ie. MGD/evaporative dry eye and at the beginning of my nightmare thought it would be easy to fix with eye drops but it's turning out to be very very hard to manage/resolve, so can understand your frustrations. Many people here on this forum are in the same boat so you are not alone.

            Do you have access to Ikervis/autologous serum drops/PRP in Sweden? Also has the doctor mentioned anything about taking doxycycline? Some people find relief with this.

            Good news about the IPL by the way.

            As for me, I haven't found anything that is helping me after a year of suffering with this, but as steam/humidity makes my eyes feel "normal" I have just bought myself Blephasteam. Perhaps you could get this as well?

            Comment


            • #7
              Hajenthirteen I think a great place to start if it does sound like MGD is to do what Alix mentioned and get a meibography to see how much damage there is to your glands. It's a simple process, however I don't know the availability of this in Sweden. It will give you something that resembles an x-ray and each gland will show and you can see where your good and bad are. I found it helpful as it gave me some sort of quantification as to what I'm dealing with.

              Comment


              • #8
                HI Marcus:

                Let me tell you that if you work on screen(s) all day you can bet that is most likely the source of your problems. You may have to consider a career change. Here is a link to a synopsis written by a member called pythonidler. It is an excellent resource to help with the understanding of this multifaceted disease.

                If your doc did lipiflow he most certainly probably has the capability of doing lipiview which is the meibography. Make sure you ask because that is key to a good diagnosis. Did they express your glands after the IPL, and if so what came out? Don't be discouraged just yet because IPL can take several treatments to yield results. I have had 6 so far and didn't really get any improvement at all until after the third. The 5th and 6th have given me the best results though.

                Quattroboy is correct when he says "Until you get a clear understanding of the root cause or causes of your dry eyes you can't focus the treatments." so a clear understanding of the status of your glands is key.

                Comment


                • #9
                  Originally posted by hannahmaywils View Post
                  Hajenthirteen Can you get hold of Restatis ? Or even better, Xiidra? I am having to travel to the US to get hold of Xiidra to help me with my dry eye
                  HI Hanna: Just a note to let you know that drugs are VERY expensive in the US, they are much cheaper in Canada. Xiidra in Canada costs about $70 USD ($100 canadian) for a one month supply. It actually does me 2 months because I can get a total of 4 drops out of a container so only use one/day, not 2.

                  Comment


                  • #10
                    If your clinic didnít image your meibomium glands, thatís slightly worrisome. Any good clinic would image the glands to determine if thereís been atrophy, among other things.

                    when are your symptoms the worst? In the morning? Or do they feel best in the morning and get worse during the day? Do you have mucus in the corner of your eyes frequently? Do you snore? Do you sleep on your side? Do you produce poor quality oil, grey and turbid? Or do you have good quality and poor quantity?

                    I think getting the allergy testng and hornone testnjg is a good idea. Make sure to ask for tsh, t4 AND t3. Most doctors will not do t3 but itís important. Get your other hormones checked too, testosterone free and total, progesterone, estrogen, fsh, lh, etc. that way you can start eliminating possible causes.

                    Let me say say that for MGD, the best drugs Iíve used are compunded steroids and doxycycline. If your oil is a problem, I think doxy is a go to medication but I havenít seen you mention that drug. Again, Iím not your doctor, I havenít seen you, so I canít make medical decisions for you. However, I would assume they would try that drug with you because itís a really effective drug for MGD depending on the cause.

                    Let me also say, Iím sorry youíre dealing with this. If anyone here understands how life can get so bad, itís me (and Iím not special, we all live our own little hell). When you say, how can you live like that. Makes me sad because I know EXACTLY how you feel. If I didnít get some relief, I wouldnít have done so well, letís jist leave it at that. So I get it..,thatís why, for you especially, you may have to figure this out a bit in your own AND/OR travel to a different country for better care. I would NEVER have figured out my diagnosis on my own. I needed a genius investigative doctor to figure this out, and I found one after almost a year of suffering. Finding good care should be your primary goal and keeping yourself as comfortable as possible in the meantime.

                    I didnt see a mention of steroids either...so they havenít tried steroids or doxy on you yet? As for lipiflow, I do t think Iíve seen it help anyone long term. I guess if your MGD is due to old age, that the glands are just sluggish and eventually clog, I coukd see lipiflow possibly helping. People like ourselves, I believe our pain/discomfort probably puts us into another category. Iíll say that if hot compresses donít work well, or offer relief for very long, lipiflow probably wonít do much long term. Same with ipl. Ipl is indicated for people with ocular rosacea. For those people, it constricts the dilated blood vessels in the lids. If you donít have inflammation caused by rosacea, ipl probably isnít the best fit either. Both will help, but most likely only temporarily.

                    Thatís why finding the root cause is key. For example, I have floppy eyelid syndrome. Every doctor was testing me as if I had advanced MGD and ebmd. Which did nothing to really help me. Because it was the back of my eyelids that was the isssue. No doctor flipped my eyelids til I met this guy. Then he said, you have chronic papillary comjunctivitis and stretchy eyelids, do you snore? I said yes I just started this last year. Boom, he nailed it. Told me to stop all the drugs I was on, start doxy and steroids and cover my eyes at night (I rub my face into my pillow, which causes a lot of this). Then I finally started healing. So you must target the therapy. People may say, take this drug or that drug, I just said that to you. But at the end of the day you need a professional to diagnose you and then apply a good drug therapy.

                    Good luck, we can help, donít give up and keep searching for answers. If you have a moment, read python finders computer induced dry eye. I know you said you havenít quit work. He suggests to do so if you work in computers. All that discomfort you feel is causing further damage. I know you donít want to hear this, but I think you need a new job. I know this is a lot to take in, but I promise you, you can get better. Good luck.

                    Comment


                    • #11
                      I am overwhelmed from all the response, i all of a sudden don't feel as lonely in this as i have been for the past 6 years. I will get back to you during the weekend! So glad i found this forum and realizing that i am fighting the fight with a lot of other persons, hope you all have a good weekend.

                      Comment


                      • #12
                        hannahmaywils No i don't think so but i sure would like to test one or both of them one day since i have been seeing these products been mentioned a lot in here. Are they prescription free?

                        Alix Okay i understand, thank you. I had pretty much the same experience with eyedrops as yourself, a little bit of relief in the beginning (during the first year), then not so much effect and finally i thought that most of the drops i used only made things worse so these last years i have been skipping eyedrops completely. I don't know about neither Serum drops or doxycycline i will write these down for the doctor, even though i don't think Serum drops are available in Sweden yet. Thanks for the advice on Blephasteam, i saw that the clinic has these for sale in there own shop. Are these comparable to warm compresses?

                        CJ L. Thank you, i will bring this up with the doctor as well.

                        farmgirl Yes you are probably right but the thing that makes me doubt that a little bit is that even after 1 month of vacation and being away from the work, screens, dry office air etc. i have not noticed any improvement or perhaps maybe just a slight improvement. It sure would be nice to try being away for a longer period, wish i was a millionaire But of course there are other works, unfortunately screen free workingplaces are not in majority here in Sweden 2019. But the breakup from this current job comes closer and closer, i just hope i have a new one the day i can't take it anymore. Regarding the IPL, no they have never done any sort of expressions after these treatments. Thank you for your input, i will work hard to learn exactly what the doctor is seeing when he looks at my eyes.


                        Dowork123 First of all thank you for sitting down taking your time to write this long message that means more than i can express to you. When you are saying that you know exactly what i am describing that really makes something to me, no one has ever said these words to me before.

                        In general the problems are definitely the worst in the mornings during the travel with bus + subway to the workplace here in Stockholm and then the first couple of hours at work are usually horrible until it usually gets better (depending on having to be in meeting rooms ore not etc.) and then it usually get worse again during the last working hours when the eyes gets really red.

                        I don't snore very much, i usually sleep on the side and i don't have mucus in the corner of the eyes. The problem is with the quality of the oil, not the quantity but i don't know a lot more than this unfortunately. It is sure that i need to get at clearer picture on the problem, hopefully i can get it at the clinic otherwise i have to go outside of Sweden.

                        I will ask the doctor for doxycycline when it being mentioned twice in this thread now It is prescribed however.

                        I am glad that you are doing better after seeing this doctor i wish i could meet a doctor like that, a person who really knows medication and can ask the right questions.

                        I will not give up, again thank you so much.



                        A few questions to the forum:

                        * Is it worth to try flaxseed oil? I have seen that some people on this forum seems to connect the use of this oil to
                        there improvement. I guess it can't hurt?

                        * The only thing that makes me feel normal these days is after drinking some stronger alcohol, the eyes get blank and i can
                        feel like a normal person for a few hours until the spell is gone. Am i alone experience this or is there anyone who
                        share this feeling?


                        / Marcus
                        Last edited by Hajen13; 14-Jan-2019, 06:24.

                        Comment


                        • #13
                          @Hajenthirteen Hi have you thought about visiting an eye hospital/dry eye clinic in a neighbouring country to get a second opinion? I really do believe that getting a meibography done is key - you need to know exactly what the state of your glands are. Whether you have them all there and they are just blocked, or whether they are atrophied then would decide what the best treatment is. Personally I saw several different doctors at Moorfields (best eye hospital in the UK), not getting anywhere, before getting Lipiview done at the Dry Eye Centre in London where I found out for the first time that most of my glands are gone and that I am a partial blinker.

                          Please look into getting Lipiview/meibography done in Sweden. If this is not possible, I would recommend the Dry Eye Centre in London.

                          As for Blephasteam, I haven't used it yet (waiting for it to arrive in the post) but you can read reviews on this on the forum, and I will post feedback once I've used it.
                          Last edited by Alix; 12-Jan-2019, 04:41.

                          Comment


                          • #14
                            Hi Marcus

                            What important is
                            1. get accurate diagnose so you can deal with it in an effective/economical fashion and
                            a right combintation/order also makes a difference, including
                            gland functions/images, glands could look normal/beautifully but no function, meaning no clear oil comes out.

                            stop inflammation cycle
                            if you can find doctor with MMP-9 is the best as it can detect more and more accurate too, I would say.

                            2. healthy diet, avoid sugar, processed food etc. flaxseed oil helps but combined with GLA works more effective. Combined these with your big meal works better too.

                            3. moisture glasses is a must to avoid (indoor/outdoor) stress from wind, dry air, blue light - etc. - brand 7Eye is great for such purposes.

                            4. Vit.D, zinc, Vit. A are important. Most people do not have enough Vit. D. Wise to check first.

                            Maybe you could find some useful tips from my old posts
                            http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

                            http://forum.dryeyezone.com/forum/ar...ueeze-lids-etc
                            (make sure to watch the videos I have found - Dr Korb, the inventor of LipiFlow, LipiView, 2016's)

                            http://forum.dryeyezone.com/forum/dr...dr-mark-milner

                            Good to educate yourself as there are too many new things to learn - this is how I have managed it and you can make it too.
                            Be positive, curious. Good luck!
                            Last edited by MGD1701; 12-Jan-2019, 06:38.

                            Comment


                            • #15
                              Alix I am thinking more and more about it because as it is right now the "truth" about my problems lies in one persons hands, the person who founded and runs this clinic i am talking about.
                              I do have trust in him as he seems very well educated in the area but i am not ready to put my life in his hands. London is not far away so it could be something, thank you for the recommendation. Do you know if the Lipiview is usually performed at the same time as (or during) the lipiflow process? I guess if a clinic have the Lipiflow machine they should have access to the lipiview?

                              MGD1701 Thank you for your post. Since a couple of weeks back i am eating as healthy as i possibly could (maybe a bit exaggerated), avoiding added sugar completely together with eating more green and trying to get all the vitamins. If there is a chance that this might help i no longer can afford to cheat in this area since it's not close to being worth it. What is GLA? Moisture Glasses
                              looks interesting, seen those before and maybe it is time for a buy (if they do shipping)

                              I will check out the links, thank you again.
                              Last edited by Hajen13; 12-Jan-2019, 10:21.

                              Comment

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