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i just cannot stand this anymore.... :(

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  • i just cannot stand this anymore.... :(

    it's been 1.5 year that im struggling with eye problems due to contact lenses. it's been 1.5 year that i have a chronic irritation of eyes and dry eyes: when i wore lenses, my eyes were irritated but i couldnt feel the dryness and when i stopped lenses, i felt that horrible dryness and the irritation never went away...
    Its been 1.5 year with almost a dozen of optlamologist, allergist and a psychologist but nothing better...
    needless to say that it has huge and far-reaching consequences on my social life and school life ( im 20) : at first i was trying to stay normal like everyone else, going to parties ect but the symptoms worsen overtime my eyes became so dry and so red that i was impossible to continue like this, its was just hell, so now ive lost contact with all my friends, ive missed my exams and have to start again next year.
    thats stuff deeply affect my self esteem, i don't look anymore in the Mirror because my eyes are just a mess, i don't look people in the eyes (normal people with normal eyes don't know how Lucky they are) and can barely keep my head up when i'm walking outdoor
    i have mgd and it must be severe because after 4 months of blephasteam, 3 months of doxy, 5 month of cyclo,+ 3 months of flaxseed oïl, + lower plugs, my eyes have not improved, even just a little bit. the doc said ,one month before, that my BUT has improved... okay but i don't care i had the same symptômes when my BUT was 4.
    Moreover ciclosporine 0.05% made my eyes extremely sensitive to everything,( i can't go normally to the kitchen , i have to put my head down because the air is killing me) but i don't want to stop cyclo cause im afraid of the rebound effect that some have experienced. Its been 6 weeks that im at home and i have went out only 1 time to go to the doc and my eyes just killed me...
    The worst thing of this story is that its summer, my eyes are still a mess, opthalmos are on holidays, and in 1.5 months i will have to go to school again and i know i WON'T do it with those crappy eyes, i refuse to go through that again...
    im really afraid of having those atrophied glands or maybe just blocked glands because massage do nothing .i know there are solutions like lipiflow or probling but in France there is no probing and lipiflow is too damn expensive..
    i wanted to say this because friends don't understand and even my mother doesn't understand the level of discomfort of dry eyes and i have nobody to talk about it exept other dry eyes sufferers...I really admire those of you that continue to live and figth against this for years but i have just tried everything i could and i'm too tired of dryness, burning and of people asking about my bloodshot eyes.
    Some people wants to win at lottery, i just want to have normal eyes.
    so im very depressed, i just don't have ANY patience anymore and i seriously don't know if i will go through the summer like this
    Last edited by nicolasdu92130; 04-Jul-2013, 05:44.

  • #2
    Here's the thing - yes, this year has obviously been totally sucking for you, and it's not made any easier by the fact that regular people just don't understand what you're feeling.

    But, when you're ever feeling so depressed that you don't think you can do this anymore, remember this - you WILL find a solution, it's just that it sometimes takes a while to find it. You have potentially DECADES of awesome life ahead of you - so let's say worst case this eye thing drags on for another year - that's 1 measly year out of DECADES of awesomeness - so can you get through 1 more year in exchange for DECADES of awesomeness to come? You better believe you CAN. It's simply not logical to do otherwise, is it?

    I'd write more, I have some ideas... but I have to get my little guy off to swimming lessons right now... can't be late!

    In the mean time, hang in there, and know that you are not alone in this. There are many people out there just like you, and they have gotten through this, and so will you.... just be patient (easier said than done, I know... but you can do it!)
    Yet another post-Lasik (2005)...
    Anyone have a time machine so I can go back and undo this mess?


    • #3
      Hey there,

      Sorry to hear about the dry eye, I know how you feel. I am only 24 and have had it for two years so not much longer than you. In that time, I have spent thousands on treatments and drops, and nothing has been the "miracle cure" BUT I have been through short bouts of what felt like a remission. During these "remission" times, I remembered what it's like to live
      normally, and the thought that maybe one day I can be like this again has kept me sane.

      You are only 20 and like Sagg said, you have a lot of time to figure it out. I know we all want this gone like yesterday but it takes a lot of trial and error. I don't work right now and although this is depressing, I know that ONE day I will be maybe semi normal again with whiter eyes. I don't expect perfection (this was hard at first) but even minor improvements give me hope. it sounds like you still have other treatments you can try and maybe one will be "thing" that let's you move on.

      When I am down, I read the "Dry eye Triumphs" section of the forum. It will allow you to realize it is possible to get better as many others have. Sometimes I also google "dry eye remission stories, or ocular rosacea remission stories"

      Regarding Restasis.. I have recently stopped after a six month trial as it was making things worse. (This is just for me.. Doesn't mean it doesn't help others) I am going through a rebound my doctor said will last a few weeks. I personally don't recommend stopping if you are not prepared to be worse off for a few weeks. I have stopped in the past as I have tried it many times and I always get a rebound. It goes away but takes a few weeks..

      Anyway, I hope you start to feel better soon and know people on here can always help.


      • #4
        I'm sorry you're going through this. I can relate to every word you wrote. With this level of suffering it would be nice to know and feel supprted by other people in person going through the same thing. It is very tough when it seems like no one around you really gets it. I hope some day there will be support groups for dry eyes like other chronic conditions.
        I hope you get some relief soon.


        • #5
          thx everybody for replying

          saag, you are totally right about the decade of awesomness and that is typically what i would say to someone in my situation^^ but right now, at the moment, the problem is that i can't see it, im just felling miserable and with no hope in sight for the next months

          faith1989, ive read too the dry eye trimphs, its very inspirating, but i need a improvement, even a little^^
          really hope we will get through this, this is not a life for Young people, nobody deserves this

          jade, you r totally right, it would be so great to have dry eye friends in my areas, but there isn't a dry eyes community in France.


          • #6
            Originally posted by nicolasdu92130 View Post
            thx everybody for replying

            saag, you are totally right about the decade of awesomness and that is typically what i would say to someone in my situation^^ but right now, at the moment, the problem is that i can't see it, im just felling miserable and with no hope in sight for the next months
            I hear ya... hard to look too far ahead when you're in dire straights and need improvement NOW.

            When I was at my worst I found that hard too.. (just posted about that here, actually - you'll have to scroll a bit to get to it, but start at "Picture needing drops every..." and go from there)

            What helped me at my worst, mentally speaking, was to just focus on right NOW... how to make this minute more comfortable. One quick and easy thing that helped me a lot when my eyes were burning was to run to the bathroom, and turn the water on as cold as it got - let it run until icy cold, then splash the cold water over my closed eyes. Dry off, and continue with my day. I'd do this water thing as often as needed - even if it was every 10-15 minutes at first - it gave me a lot of relief.

            Also, I started wearing moisture chamber glasses - tough to do from a social standpoint, but sometimes you just get to a point where you just need to be more freaking comfortable and you'll do whatever it takes. I'd wear my sunglasses Wiley X's everywhere - even grocery shopping. And since seeing myself in them depressed me, I just made a point of NOT looking at myself in the mirror when wearing them. No sense in reminding myself that they were on my face - that made it easier to act normally when chatting with people etc so I would feel less self-conscious.

            Also, as I'm sure you're already doing, rest your eyes as much as possible - instead of watching TV, just listen to it with a cool cloth over your closed eyes - you can peek at the TV once in a while if you must see what is going on, but you'll probably find that for most of it, you'll be able to follow along just fine by merely listening to it.

            For books, try audiobooks - they are not too bad, and don't bother the eyes like reading does.

            For computer use, cut it out entirely, other than maybe a quick e-mail check each day, or a few minutes here and there to research things that might help your eyes.

            Check out the DEWS report - - it's a fantastic resource for what's in the treatment guidelines - to save your eyes, skip to the chapter on management of dry eye - there is info on treating MGD/blepharitis

            Try to figure out what is causing your eye problems. I know, you've been to a ton of dr's already... but sometimes the patient is best equipped to do the kind of trial-and-error stuff that is needed to figure these things out. Sure, get tested for obvious possibilities like hypothyroidism, allergies by your dr etc. but after that, maybe some self-experimentation is in order...

            But in the case of allergies, sometimes you may be allergic to something that isn't showing up on the prick testing that the allergist does. You could experiment for a few weeks of a diet where you eliminate all of the most common food allergens (ex. dairy, wheat, nuts etc), and see if your eyes improve.

            If that doesn't work, then maybe try a strict anti-inflammatory diet - maybe a few weeks on a basic one will do ie. no processed foods, lots of fresh fruit/vegies, no "white" foods (white bread, potatoes) etc.

            If that doesn't work, maybe try a few weeks of an ultra low-carb diet since some say this way of eating has an anti-inflammatory effect in the body...

            You just never know what might help...

            Also, if you're not already doing so, you could add omega-3 supplementation to your routine - omega-3 fatty acids are anti-inflammatory (and inflammation is typically involved in dry eye and MGD) - I'd strive for about 2 grams of omega-2's per day - sources include fish oil, and krill oil - read the labels carefully to make sure that whatever you take gives you enough omega-3 fatty acids - if you don't tolerate one brand, try another - how well you tolerate these supplements can vary a lot from brand to brand.

            re: Restasis (cyclosporine drops) - many people struggle with these, but due to it's potential to provide your eyes with some anti-inflammatory effects, it might be worth it to re-visit this issue - did you try keeping the Restasis in the fridge? often putting it in while cold leads to less discomfort. Also, I find that I do much better on Restasis if, after putting it in, I close my eyes tightly and rinse off any Restasis residue from my eyelashes so it doesn't continue to leach into my eyes all day long. Also, about 15 minutes after using Restasis, I find that using a drop of artificial tears can help counteract the irritant effect of the Restasis. Maybe these tips will help you too...

            I have always felt like I'm in some kind of war with my eyes... and I'm hell bent on being the victor and not letting it get the best of me. This outlook often helps me grit my teeth and carry on fighting to have a good and HAPPY life despite how difficult this can be at times. That being said, I'm in a great place eye-wise these days (far from normal, but compared to where I've been, this is fantastic)... so there's hope for you too. No matter how bad it is now for you, things will improve eventually... it's just a puzzle that you need to solve first.
            Yet another post-Lasik (2005)...
            Anyone have a time machine so I can go back and undo this mess?


            • #7
              thx you very much saag for you reply, far more useful and motivating than what my parents said (they think im just lazy, that my eyes are in my head....very very frustrating stuff...)

              thx for the ideas, i didn't think about restasis on my lashes, i will try to wash them after, it could help with the stinging.
              i will try cold too and the diet elimination stuff to see
              considering omega 3, thats ok i have super fish oïl omega 3 from fortifeye, its very very concentrated, so no problem about it

              About computer, thats wierd because even if i blink a lot,if, i have low luminosity, if i don't stare and if im a little higher than the normal position, i still have trouble with it... but no problem with tv

              my problem has been caused by lenses, they messed my eyes so much

              for the gogles, i'm not ready to make the step, i wouldn't overcome the social aspect^^

              im really afraid that my mgd is very bad, because nothing helped me and however im on everything recommended by the DEWS exept thing like Azasite, but there is nothing like this in France

              thx again for the idea, and i will praying for a miracle ( i have an appoitment Wednesday, i will bring tons of article and discuss about treatment with the doc )


              • #8
                Originally posted by nicolasdu92130 View Post
                About computer, thats wierd because even if i blink a lot,if, i have low luminosity, if i don't stare and if im a little higher than the normal position, i still have trouble with it... but no problem with tv
                I think it's pretty common for computer use to be worse than watching TV. I know it's definitely true for me - as my eyes started improving, I was able to start watching TV normally again well before I could start using the computer more each day. Part of it is probably to due with the fact that the activities I usually do on the computer require more concentration (and therefore cause me to blink less) compared to passively watching TV. I find writing on the computer is one of the worst things for my eyes, whereas simply reading on the computer is significantly better. And watching TV is usually better than reading on the computer... unless I'm watching something that I found so gripping that I stare at that too haha

                Originally posted by nicolasdu92130 View Post
                my problem has been caused by lenses, they messed my eyes so much
                I wonder if people who start off with contact lens intolerance are predisposed to it due to other factors - why are YOU unable to wear contacts anymore, whereas others wear soft lenses every day for decades? Some people even abuse their lenses so much, overwearing them, sleeping in them, not cleaning them properly, yet still, their eyes are white and clear, and their eyes feel fine. Why can't you do that? What is different about you? (and me, incidentally... my inability to tolerate contacts was the reason I got LASIK) In searching for a cure for yourself (or even just improvements), I'd not only focus on the obvious tactic of doing everything reasonable to lower ocular inflammation, but try to figure out what that mystery factor is that made your eyes react as they did to contact lens wear. That mystery factor could be key to getting your eyes back on track.

                Originally posted by nicolasdu92130 View Post
                for the gogles, i'm not ready to make the step, i wouldn't overcome the social aspect^^
                Well, maybe you could start off with at least wearing them where no-one you know will see you? ex. a/c blasting in the car when driving alone - wear the Wiley's - walking around at home alone? wear the Wiley's. Running errands alone? wear the Wiley's. (the sunglasses ones aren't the end of the world... they really aren't... especially if you stick to only wearing them when alone, or unlikely to run into anyone you know) If wearing them lessens the irritation you feel, that will likely mean less inflammation, and can help your eyes (and MG's) improve faster than they would otherwise.

                Originally posted by nicolasdu92130 View Post
                im really afraid that my mgd is very bad, because nothing helped me and however im on everything recommended by the DEWS exept thing like Azasite, but there is nothing like this in France
                Not the end of the world about the Azasite... we don't have it here either, and I was still able to fix my MG's - in my case, I appear to be intolerant to wheat - when I stop eating wheat, my MG's go back to normal. I've gone on and off wheat for weeks at a time, and I get the same results every single time.

                One more thing - when trying to figure out what was going on with my MG's, having a magnifying mirror with an LED light in it helped a lot - this enabled me to actually SEE my MG's improve (or not) depending on what I was doing. I didn't have to guess based on how red my eyes were, or wait until I saw the dr. to find out how my MG's were. I could monitor them every day and see for myself if any changes I was making were impacting my MG's. I bought my magnifying mirror on

                re: mirror... get something like this

                This one has better magnification than the first one, but it doesn't have an LED light, so you'd want to have a penlight to shine on your MG's so you can see them well enough (just don't look directly into the light... they all have warnings about that, and I'd be scared to find out what would happen if I disregarded the warning hehe)

                While I know many people depend solely on their dr. to tell them if their MG's have improved, my experience is that my MG's can look drastically different within a few days time depending on what I've been doing - so, if I go to the dr. on a "good" day, he'd think my MG's must be doing awesome, when maybe it was just a freakishly good day and I've been doing badly for 90% of the other days in between appointments. It's better for me to see for myself in order to have a truly accurate picture of the general trend with my MG's.
                Yet another post-Lasik (2005)...
                Anyone have a time machine so I can go back and undo this mess?


                • #9
                  What you have said about the reason of my lenses problem is interesting because a few month before i ve been to an allergist and according to her im allergic to dust/mite

                  okay so i have cleaned everything in my bedroom, changed the bed, hepa vaccum etc, and during one week there was not a single mites in my bedroom. Ive noticed no improvement
                  Moreover i tried anti allergic drops during one month and no improvement
                  and my eyes never itch ¨¨

                  So i was at a loss and i gave up that possibility

                  what is more suspect is that i have papillas under my lids, i snooze like 5 times per week.

                  i really think that i have something like peranual conjontivite added with that dryness and mgd problem

                  considering that before the lenses i have never had any problms with my eyes, in think that developed allergies with my lenses du to my poor hygyene (with the lenses huh )

                  i will clean my bedroom again to see if anything change and maybe try those Similasan anti-allergy eye drops

                  thx again saag


                  • #10
                    Originally posted by nicolasdu92130 View Post

                    considering that before the lenses i have never had any problms with my eyes, in think that developed allergies with my lenses du to my poor hygyene (with the lenses huh )
                    Keep searching... it may take a while, but it will be worth it if you can figure out with certainty what your true trigger factor is.
                    Yet another post-Lasik (2005)...
                    Anyone have a time machine so I can go back and undo this mess?


                    • #11
                      I am sorry to hear that you are suffering so much, it is unfortunate that your parents have never had to spend even a half a day in your shoes because if they had they would totally understanding.

                      I do want to encourage you to get a pair of the wiley X glasses though. I got mine online from safevision. They sent me 5 pairs of frames paid for with visa which I tried on for fit and then returned for a credit. The Wiley-X brick won for me and I got the darkest lenses possible with my prescription in. I wear them EVERYWHERE!! They are such a comfort to me and honestly, they are not even ugly. Sometimes I feel like a moviestar since I am the only one wearing sunglasses but really I CANNOT survive without them. I do have clear ones which I don't like to wear as I think they look like a raccoon but tonight I wore them in public as I had to walk in the dark from an outdoor event, through a midway to the public transportation system and then to my car. I took them off on the train but wore them outside and NOBODY gave me a second look. Without a word of a lie if I get walking in a mall and I can feel any breeze on my eyes I almost panic and have to race back to the car for my precious Wileys.

                      Truly the moisture chamber glasses are a God send and I am quite certain that if you ever got a pair you would be loath to live without them.

                      This is just one of the many things you can try in an effort to get your life back on track. Don't pass up the opportunity now because when you do you will kick yourself for being vain. They are now just a part of who i am and if somebody has a problem with that it it theirs, not mine. If you had polio and had to wear leg braces people would just think, oh she/he has polio had has to wear leg braces...nothing more.

                      I encourage you to give them a try....F/G


                      • #12
                        Nicolas, So sorry you are suffering with this but glad that you are old and wise enough to take action and do the best you can to heal yourself.

                        I think you need to take advantage of your access to cornea disorder specialists and get more guidance on whether it's allergic papillae rubbing on your eye surface making things worse, or whether you need help with chalazia. Which cyclosporine 0.05% are you using? They must advise you how to withdraw or change the base, if that's best. We are in over 6m regular follow-up but we make another appointment with the team if there are problems. We have had different anti-inflammation regimes that have been good - some heavy on prescription drops, some minimum - and this is partly why there's this 'your guess is as good as mine' approach as we get used to how our eyes react, especially with allergies and individual sensitivities which develop, but experienced advice is better than trying random meds.

                        Worth reading Rebecca again about time and healing

                        Sometimes I say things to my poor daughter like 'well you're not really looking after yourself as they have advised...' whereas, truth is, her instincts on how to look after this are good when she is not so stressed. Positive thinking people of all ages really help and we have to avoid the trivial complainers sometimes! There are plenty things she can't do but we have to choose to enjoy what we can do, especially the small happinesses. Young people getting ill and spending time resting in a darkened room with eyes closed and cold compresses seems like it wasn't supposed to be in the plan - is this how you and your family are feeling? Same with other conditions that onset young - I think diabetes, meningitis and glandular fever and accidents are very testing too. My sister-in-law is totally immobilised with fast progressive multiple sclerosis but she travels the world with her husband in an disabled-adapted camper-van. A more philosophical approach on what life is supposed to be about is required.

                        Did they do a swab for microbial keratitis from contact lens solutions?

                        Protect your eyes with prescription wraparound sunglasses, as Farmgirl says (sure works for Iron Man). Then you can keep a moisture chamber or a tear film that will enable healing, and go out for walks, shops, museums, watch or play sport without photophobia and pain. Paid dog walking has been great to force my teenager back outside into nature, also she does some volunteer work with children which is tiring but little children cheer her up. Nobody cares if you are wearing sunglasses. We are lucky to live near the Thames and everyone on the river wears sports wraparound eye protection with seals. Maybe some sailing or rowing or camping would help with your mood once your eyes are protected.

                        We are still using a humidifier, esp by the computer for studying. Remembering to blink is a problem, esp when the dry eye surface doesn't prompt it. Also relaxation can include yet more staring at screens so it's important to go outside for breaks while studying, and explore audio entertainment rather than visual. What a great time to learn acoustic or electronic guitar or keyboard.

                        Another option is to cover or tape your eyes (3M microporous surgical) at night, in case that helps. Good nutrition and good oils seem to help. We also sometimes use eg Body Shop teatree gentle face wash and moisturiser products in case of demodex overgrowth, which seems to help with MGD, but that probably isn't your main concern.

                        Azasite is definitely available in France as Azyter although it's a useful antibacterial rather than a cure-all. It stung on day 1 but OK after. We used it 2/day for 3 days, 1/day for 3 days. From your existing chemical damage, I'm not suggesting it.

                        It's worrying that you are thinking about self-medicating on eg anti-allergens without help to know what needs fixing. Particularly in the early days she was given random antibacterials and anti-allergy drops with preservatives that did much more harm to the eye surface than good, ie 'medicamentosa'. This was before we had a useful diagnosis of meibomian gland dysfunction and type IV hypersensitivity.

                        An optometrist could count TBUT for you if you can find one with dry eye interest who isn't just focussed on selling eyedrops, maybe someone with hospital experience? Our optometrist does the refraction for the spectacles but has experience with disorders and advises us when re-referral is needed, so maybe that type of ongoing support would be good too.

                        Have you got some plans for the long summer? Even a list of small projects - trip to buy something, organise family photograph and video history into online albums, practical tasks at home, gardening - help with depression, especially if your contribution is useful or you choose to do something specifically to better your health. Sometimes when we are studying we lose touch with how important, helpful and healthy the small and easy tasks are, like shopping for older people or delivering leaflets for community projects. An enforced daily morning walk routine wearing the wraparounds is a good one.

                        People talk about being strong and fighting chronic illness but for us it has been the opposite - more like choosing a good happy life, deliberately doing enjoyable and useful things, like going for a drink with a friend, cleaning someone else's shoes just to see their face, choosing a new shirt. This long hot summer is when we have the time to do these good things.

                        The turning point with depression is to specifically choose to do good things that lift your mood and health. This can mean being quite bossy with yourself about taking that early morning walk and a healthy bedtime routine, what your mother would have done for you when you were a child really.

                        Try deliberately giving yourself a few days 'holiday from worrying'. It's amazing how this helps and of course nothing is much different, just no anxiety. Then this becomes a healthy and good mental habit, and you're focussing on what's now wise and possible, and open to exploring new solution ideas. SAAG is an amazing positive thinker so I would go back over her posts and watch her YouTube video.

                        Just now in London, we've got this combo of hot, dry, pollution, water full of chemicals, and seasonal allergens, as you say, and I guess Paris is the same, so some time out of the rat race and a trip somewhere more healing to the eyes seems like a good idea during the 1.5m. It will be easier to think about next academic year if you've had a break. Any thoughts?
                        Last edited by littlemermaid; 08-Jul-2013, 03:25.
                        Paediatric ocular rosacea ~ primum non nocere


                        • #13
                          thx for replying

                          farmgirl :

                          you are definitely right about the glasses i will get information about it (because outside Wind is my main problem, my eyes seem to be very sensitives) and what is the procedure to get it adapted to my view ( i have myopia and astigmatism)

                          littlemermaid :

                          im using ciclo 0.05% that is all i know^^. On Wednesday i will see my ophtalmologist and i want him to increase ciclosporine concentration like 0.5% because 0.05% doesn't nothing for me and studies have proven that higher concentration or more frequent usage benefit people like me.
                          Don't worry about the allergy stuff, i have already put many chemicals into my eyes when i was not aware of that stuff, so i will only clean my bedroom ect^^
                          Thx for Azyter, i will talk about with the opth on wednesday
                          About Holiday, i'm going to Martinique for 2 weeks, a tropical island (about 70% of humidity), with no computer, so hope it will help because its very hot and dry in Paris right now

                          Good news, i have an appointment with the very best specialist of France(he is very implicated with dry eyes, has a good reputaion and have written good articles about it) Doctor Serge Doan, the 23 August, so i know i will be in good care with him


                          • #14
                            Good news, Nicolas Would you be kind and post up what he is thinking these days about eg cyclosporine in long-term use? I can't see how increasing the concentration would help and I'm interested in what bases you've got access to. What's working for us has been reducing anti-inflammatory drops after control of flareups to the absolute minimum, then off as soon as possible. I think any chemicals we use seem to change the environment and we are trying to coax the eye systems back to 'normality', especially because I believe I am dealing with an immunology problem. Although it sounds as if yours is more like chemical harm and apoptosis on the eye surface, it sounds like you have got an allergic sensitive component. It would be great to get his thoughts. Good luck!
                            Paediatric ocular rosacea ~ primum non nocere


                            • #15
                              there is that thread


                              but i can't find studies about higher concentration, i have only seen that mentionned in articles.

                              i will ask the ophtomaloggist about this