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  • Dont know what to do anymore

    So for a while I've been lying awake at night searching the forums for answers to my issue. I'm sick of being constantly plagued by this issue, I'm tired, throwing up and not even wanting to get out of bed. I'm still doing some sort of routine ketofall... fish oil.... warm compress or cold depends... optimel... still plagued by dryness I csnt see my optremist.. due to the virus... I dont know how long this will tske and then at the eye hospital to press on at options dont know when jll get an appointment... I was suppose to have one last year hopefully. I'm not sure what else to do, I'm tired physically I'll now because of being plagued by this. I keep crying as I've still had no relief. I asked my mum about removing carpet from my room as I've had allergic reactions to dust on my hand that then clear after a little while. I feel like I'm doing nothing to budge this disease at all and I cant cope anymore knowing I've got more years of this. I feel like I'm going insane due to the dryness. My eyes have went further bloodshot due to dryness and I dont know how to stop it..... I'm barely getting out of bed. Nothing seems worth it for my eyes anymore and it's so difficult to treat this disease.... im becoming less and less like myself and just a living shell in a body because of this. I thought I maybe had inflammation due to burning dryness and all that lot. Got hydrocortisone.... its did nothing but make me feel spaced out, pain where my organs are located very rarely.... and just general tired and adding more illness to me. I want to press on just incase. I cant seem to budge the papillary reaction for my allergies.... no matter what I do... its really irritating my eyes.... I feel lost. I wanted to go back to university but I cant physically cope like this anymore. My family dont really get it and are trying to st least suggest things ot somyjems it's worse and they say it COULD BE WORSE. I agree it could but I cant get this under control and I'm physically loosing my mind and I'm out of money constantly.... I'm lucky if I can barely do a job for a few months. I thought I was getting somewhere last time but it seems I am not. I asked if there was anything else I could do which was not really answered. I'm tired of this disease and physically cannot cope knowing I did this and that this is how I live my life now day in and day out.... I'm stuck. I just want relief and even that seems like a major hassle with just mgd... my top glands in a mirror look ok producing oil and bottom ones are ok but alot slower I think due to allergies seems my lower ones get effected more. I'm not sure how to remove or get rid of the psoillsrg reaction ive tried hoovering alot lately but I feel like I'm wasting my time. It's a good Hoover that picks up dust aswell..... I'm just I dont know how to cope anymore at 23 with mgd and allergies. I thought I'd find an answer kn here but havent found anything... I wish there was a cure but they dont seem to care about us anymore or at least takes years for it to happen if at all! I'm tired of this disease if I stop it foesnt seem to matter as my eyes will be red anyway... I just dont know how to progress in my life it seems pointless when this disease has taken so much from me.... I keep thinking I'll have hope and I'll get out of it.... but I dont know anymore. I'm tired of this continuous battle. I cant exactly die either... I feel so so lost.
    Last edited by epicjinx; 01-Apr-2020, 17:42.

  • #2
    Hang in there! Sometimes it just takes smalls changes to improve the situation. Like changing artificial tears (e.g. I am seeing some improvement with thealoz duo rather than systance balance), or your diet (flaxseed oil, sunflower seeds, avocado), improve the eye lid mask (Therapearl or Bruder mask) and new massage ways, reducing screen time (let your eyes rest for the time they can, this lets them heal. I notice a big difference since I don't use my computer that much anymore), nasal rinse if you are prone to pollen allergies (with a netapot), moisture chamber glasses, cyclosporine eyedrops, 20 rule, etc.

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    • #3
      Originally posted by gilles View Post
      Hang in there! Sometimes it just takes smalls changes to improve the situation. Like changing artificial tears (e.g. I am seeing some improvement with thealoz duo rather than systance balance), or your diet (flaxseed oil, sunflower seeds, avocado), improve the eye lid mask (Therapearl or Bruder mask) and new massage ways, reducing screen time (let your eyes rest for the time they can, this lets them heal. I notice a big difference since I don't use my computer that much anymore), nasal rinse if you are prone to pollen allergies (with a netapot), moisture chamber glasses, cyclosporine eyedrops, 20 rule, etc.
      I've tried most of that I'm using oasis tears plus, moisture chamber goggles; I even take fish oil daily but it varies my oil quality, cyclosporin is something I havent had the chance to try it's at the eye hospital over here... I'm just so tired of thinking I could get relief from this.

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      • #4
        Originally posted by epicjinx View Post

        I've tried most of that I'm using oasis tears plus, moisture chamber goggles; I even take fish oil daily but it varies my oil quality, cyclosporin is something I havent had the chance to try it's at the eye hospital over here... I'm just so tired of thinking I could get relief from this.
        How do you mean? You are tired of thinking that cyclosporin could not help you? You will only know once you tested it.
        It helped Hanssho (read his succes story). But it takes some months before it starts to have some effect. You will notice the redness of your eye lids being reduced after 4 a 6 months, which in turn can stop the cycle of dry eyes, combined with reduced screen time and cleansing of the eyelids with e.g. HOCL.

        Anyway, strange that you have not tried cyclosporin yet as I think it's one of the more general things being used after normal treatment does not have effect. Then you have doxy (minocyclin), azythromicin, terracotril in inside of eyelid, nizoral on eye lids (against bacteria and yeast / fungus), other artificial tears (like evotears), eye plugs, these scleral lenses (?), eye (polatest) and allergy tests, and the list can keep going on (enough to read on this forum, but do try to only give yourself fixed screen time, I can't keep stressing this enough! Every rest time for your eyes is sacred).

        I'd also recommend to find a (or a different if no progress, but atleast give a doctor e.g. 3 chances of treatments) doctor affiliated with a hospital that is specialised with dry eyes (external eye diseases). In my mind it gives me some confidence that that person has more chance of treating you for the right reasons, and being educated with the proper science, if that makes any sense.
        Some kind of knowing if you got a doctor with the right knowledge would be the fact that that person asks if you have done a Sjogren test (in order to exclude the fact that you have a hydration problem), and a squeeze of the eyelids (to see if there is any meibom coming out of the glands, and how it looks, how much and how slow/fast it excrete). Also light test for corneal damage would be something to not miss out.
        Last edited by gilles; 09-Apr-2020, 05:07.

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        • #5
          I'm just loosing hope lately because very little has worked for my issue, i know i shouldnt and should keep trying but im finding it difficult. I just get so nervous before because very little has helped me so far. I know i should be patient and wait things out until i see if they work, but recently things have been really mentally bad for me....

          I am in the uk so it's more of final treatment at the eye hospital and not readily avaliable for people in the uk. Never been prescribed an antibiotic, i have wondered if it would help but never been given it by my optremist. plugs ive tried but i felt nothing with unfornately.... allergy testing im going to press for after this is over. ive been avoiding my laptop alot lately and i have university work to finish and struggling to finish it due to my eyes. Yes, it makes sense last time i seen at the eye hospital they didnt prescribe anything and just let me go after it, i never enquired about other options and if they could help. So i ended up being referred again last year to the eye hospital but no idea what happened and now cant go and see them yet. my mgd always varies, last it was very nice and came out but since then im unsure but i can never really tell if im making a diference or not. I can only really tell when m optremist tells me the results.

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          • #6
            When you can get to the optometrist maybe ask about using soft contacts as 'bandage' lenses. I started off with Bausch & Lomb PureVision 2 ones and found they gave me relief from the pain I'd get when blinking etc. I'm now trying Zenlens sclerals and finding more improvement, though getting the fit right takes a lot of time. I'm in the UK and appreciate how difficult it is though to get access to these things. I find serum eye drops (autologous or allogeneic) helps (I put them in my sclerals now) but takes a long time to get approved in the UK, so my ophthalmologist suggested fingerprick autologous blood which helped reduce some pain while I waited. Here's a video about it by the doctor who did the trials:

            https://www.youtube.com/watch?v=eucBGvIJwg4
            Sufferer due to Toxic Epidermal Necrolysis.
            Avatar art by corsariomarcio

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            • #7
              Originally posted by PhoenixEyes View Post
              When you can get to the optometrist maybe ask about using soft contacts as 'bandage' lenses. I started off with Bausch & Lomb PureVision 2 ones and found they gave me relief from the pain I'd get when blinking etc. I'm now trying Zenlens sclerals and finding more improvement, though getting the fit right takes a lot of time. I'm in the UK and appreciate how difficult it is though to get access to these things. I find serum eye drops (autologous or allogeneic) helps (I put them in my sclerals now) but takes a long time to get approved in the UK, so my ophthalmologist suggested fingerprick autologous blood which helped reduce some pain while I waited. Here's a video about it by the doctor who did the trials:

              https://www.youtube.com/watch?v=eucBGvIJwg4
              I've found a place that fits the lenses for even cheaper just waiting for phase 2 to go into play and go and get them trialled. I'm like a big kid waiting on Christmas for this. I've had serum eye drops mentioned but unable to due to current situations and shouldve been seen a year ago by opthamology... when I did go emergency I got antibiotics and no ikveris due to their own reasoning and no stronger steriod due to effects of glaucoma. Really just waiting to go running for these lenses last year was ok for me after IPL so I didnt go and trial the lenses when I had the chance. So now back to waiting until I can. Thanks for your responce.

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              • #8
                Are you having top ups of IPL?

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                • #9
                  Originally posted by LindaDawn View Post
                  Are you having top ups of IPL?
                  No I didnt get maintenance at all. It wasnt discussed despite j sent an email regarding it... about if I shouldve been back for maintenance or not. Next option is sclerals when I get the chance.

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                  • #10
                    This is very interesting.

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