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Hi everyone, nice to meet you all :) Here's my story

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  • Hi everyone, nice to meet you all :) Here's my story

    Hi everyone,

    Good to have found this forum of people going through the same thing, especially interesting (and sad) to see so many other people, even other young people who seem to have the same problem as me. I haven't had dry eye for that long but it got pretty bad pretty fast. It's strange. If anyone has any suggestions or advice about my situation that would be great. I know I need a proper diagnosis and I am trying to get one, just a bit hard on the NHS.

    Well here's my story so far, sorry for the long post.

    I am a girl, 25 years old with no history of medical problems, no lasik, no contact lens wear and I’m on no medication (other than the contraceptive pill, which I've been on for 8 or so years but stopped it this week as a last resort to find out what is causing my problems.).

    Getting dry eye is so horrible, I didn't even know it existed until recently, the only knowledge I had of it is people at work saying that they're contacts were uncomfy. I’m very depressed about my painful eyes and am finding it very hard to concentrate on my job as a designer and marketing (computer based). I was also supposed to be going on a holiday to Morocco and the desert in May (HA! A desert. You can tell I planned that before the dreaded dry eye!) but I’ve sadly had to cancel as I’m not sure how my eyes would hold up walking around and driving for that long in that dryness. I’m really depressed about the constant pain and loss of things I love doing and feel like a recluse which at 25 feels awful. I think my friends and colleagues think I'm a nutcase but luckily I have a very understanding and lovely boyfriend, I don't know where I'd be without him.

    My whole eye problems began with a strange sort of painfu stabbingl ‘twang’ in the top of my left eye sometimes, almost like something was stuck under there, this was in December, so about 5 months ago. The eye didn’t feel at all painful or dry at this point, just every now and then it would be a bit painful when the twang happened, other than that it was still great, normal moist and my eyesight was great. I thought perhaps it was my hair getting into my eyes (although I’ve always had quite a long fringe and it never happened before). Well I got the hair cut shorter and whether it was a coincidence or not I never felt any more of this strange eye pain for a few weeks around Christmas but then in the middle of January, after a brief gap, the twanging pain came back. It was driving me crazy trying to work out what it was that was in there. It really felt like something was in my eye. I thought maybe my eyelashes were going in my eyes and I went mad fiddling around with my eyes, trying to find out, pulling out eyelashes near to the edges that looked like they may be poking it. I know it was stupid to do this, I just thought something had to be poking me in the eye for it to be so painful. I only realised now how delicate the eye is.

    All the messing around with my poor eye made it even more sore (although I still didn’t realise I was making it worse at this point, I assumed eyes were fairly resilient, I’d never heard of dry eye or inflammation), so I went into the local chemist and bought some ‘dry eye relief’ drops or something with the dreaded preservatives in. After using this for a few days it seemed to be getting worse so I made an appointment with a local optician, I mentioned the pain in my eye and she had a look at it for me. She said it looks as if I had a bit of a dry eye so said I should buy some hypromellose drops. I used these as necessary especially at my desk during the day and assumed this would have been the end of it and it would clear up. I used them in my right eye as well as the sore left one as I assumed they were good for me and would prevent any similar problems happening in the right one. Unfortunately it seemed to be getting worse. By now my ‘little bit sore' eye had spiralled out of control with the menthol feeling and burning and even my right eye was getting a bit sore, whereas previously it was fine, it just felt normal. My eyelids were now sticking to my eyes at night quite a bit. The sticking happened within a week of using the BAK preserved Hypromellose.

    Very scared and confused I went back to the chemist and asked if he had anything stronger for night use for my eye. He said that people my age don’t get dry eye and I must be not drinking enough water and too much alcohol! He initially refused to help me basically calling me a drunk but then I pressed him a bit further saying I really had a problem and he gave me some Geltears carbomer. Again this was preserved but I was ignorant to the dangers of this. The whole experience was horrific, I was so embarrassed by what he said and frightened by what was happening to me. I started to use the gel tears which offered a little more relief but not much. I made another appointment with my general doctor and he told me I had dry eye there was nothing that could be done and I should live with it and basically stop moaning

    Without any direction medically I used the GelTears, Hypromellose and the original dry eye relief drops I bought but tried not to use them too much as I personally felt they were making me worse. I made anoher appointment with my general doctor at this point as I was so worried. He said there was nothing that could be done about dry eye, it was chronic and I’d have to live with it. He said the reason that the eyedrops weren’t providing relief is that I wasn’t using them enough. He said I shouldn’t be afraid to use them as much as possible. Well this was the beginning of everything getting way worse.

    I followed his advice but it seemed the more I put in the drops the more I needed them and the dry eye became awful. I used the drops and sometimes the gel throughout the day and for the night the Geltears said on them that they should be the last thing used so I would normally drop some hypromellose in there followed by a bit of the gel 15 mins later. I suppose I was using the preserved drops as much as every half an hour on the doctor's advice. After a week of this my eyes were completely dried out at night and stuck very badly together and I was terrified by what was happening – it had started off so small only a few weeks before. The original twanging pain in my left eye was still there followed by a scraping pain in the same area almost constantly. If I touched the outside of the eyelid even, it hurt. I was still frantically touching my eyes, poking them and pulling them around etc at this point as I still thought there was something in there. I wasn’t poking the eyeball as such but rubbing it through the lids and pulling the lids up and looking in them. I had no idea how much damage this may have been doing and I feel so stupid for it now. However, it turns out I was right, I found a small piece of wood in there. The relief was immediate once I removed it but it still felt as if there was something. A few days later I found a very long curled around cat hair in there too. The relief after these were removed was fantastic and the scraping and twanging totally went. By now though I now seemed to have induced dry eye by all the eyedrops and touching however, and it seemed to be getting quite severe. I think I had an erosion on a couple of nights waking up scared and wondering why my eyes wouldn’t open.

    I made another appointment with my general doctor at this point as I was worried about the woodchip I found and the fact that my eye lids were stuck together. He denied that a woodchip could have been in my eye for long – despite only giving me a very cursory glance last visit and said if my eyes were sticking together I still wasn’t using enough drops. When I said about what happened during the night he didn’t seem to believe me and when I said I couldn’t sleep because of it and was really concerned he sent me away with a prescription for Lacrilube. Well the lacrilube seemed to help at night sort of. They were just as dry but the grease made them able to slide open but made it worse during the day. I really felt that along with the drops it was making my eyes worse and I assumed that when I removed the foreign object it would magically be ok, but it wasn’t. My eyes were also getting big branching red veins across them, especially the worse left eye and I think this happened after the Lacrilube.

    I started to look on the internet for answers and began taking flax oil and fish oil and read about warm compresses and expression and lid hygiene. I couldn’t really find a guide on how to do it and was doing it way too hard. Well I cleaned my lids with watered down soap and looked for some sort of bumps along my lash line and scraped/scrubbed along my eyelid margins to remove whatever might be there. I know know I was doing it way too hard and I realise now it is supposed to be gentle. I now do warm compresses and expression with a cotton bud but it still seems to make them drier still.

    The problem was getting worse and I now began to get floaters in my vision for the last few weeks, I’d not had any before and that was quite scary. As it was still getting worse I went back to the doctor. I asked for a referral which was initially refused as he said they’d only try other drops which he could do himself. He said nothing at all could be done for me. Eventually I persisted and got a referral to an Ophthalmologist. I went there and he diagnosed me with mucus fishing syndrome and told me to leave the eye alone and come back in a month if it was still sore. He seemed rather rude and shouted at me for bringing it on myself. He wouldn’t listen to a word I was saying and sent me away with a prescription for more Geltears, which was really depressing.

    More recently I also get a heavy dry feeling in my eye like it is aqueous deficient it is slow and feels thick. I didn't really have that so much before. It was more wet and stinging.

    Where I am now:

    Well, I’ve pretty much left the eye alone now, except the occasional look and lid care, or trying gently to remove anything that gets in there with an eyedrop or water. It's quite uncomfortable where the eyelashes are growing back in some places though. I’ve learned about preservatives (the really bad ones) and no longer use the BAK ones. I used preservative free Blink Tears for a while but they were no help at night so I switched to Dwelle for the time being, but even that can't get me through.

    For night I have tried wrapping my eyes in cling film, wearing a sleep mask, cool gel mask, wet cloth over the eyes and even swimming goggles. Unfortunately even if the eye is soaking wet with a wet cloth or goggle it is still stuck together and anything pressing on the eyes seems to make it more uncomfortable. I have ordered Quartz goggles from the dry eye shop and will see how these work.

    Both eyes are dry now but the left is way worse. The left is more inflamed and veiny especially in the inside corner of the eye and the underside of the lid. The left eye was the one with the original problem and the piece of wood in it.

    The bad eye somehow feels different to the other one. It feels more raw and when I close it there is an immediate sort of suction where it pulls closed and takes longer to open. Even only closed for a few seconds it feels as if it is starting to stick and when I open it, it feels as if it is very raw and exposed and it sort of stings and smarts until I blink a few times.

    Both eyes, especially the left, hurt a bit when I blink. The lid margins sort of momentarily stick together and release with a wet blink noise, the tears feel too thick. The left eye had one very sore veiny area in the inside top corner and it hurts when the eyelid moves over this – it is also inflamed inside the eyelid here and sticks the most in this area when blinking. I suppose when I blink normally I’m not closing my eyelids properly as it’s only the pronounced blinks that hurt.

    Also, I’m not sure how connected this is but around the same time the symptoms started I got a virus and a sinus infection. The doctor said I should try to fight it off but I have struggled with high temperature, nausea, headaches and a very swollen face for the last 3 or so months. The area around my eyes and above them under the eyebrows in particular have been very swollen and I think this has made the matter worse. I ended up getting some antibiotics (Doxy) and my facial swelling has gone down and my eyes are already feeling a little bit better. My skin has dried out also and my mouth has a couple of times so I worried if I had Sjogrens but I think it may have just been having a fever for 3 months that did that and I have heard you have a dry mouth when you breathe through it instead of your nose?

    When I cry one eye produces more tears, is that normal?

    First of all my eyes were quite wet and stinging (particularly in both corners of the left one but nowadays they both feel more dry and hard to blink. My lids are not inflamed or sore or in any way ‘gunky’ they have no flakes and aren’t red. When I wake there is no discharge, a little white coloured mucus is sometimes in the corner if they’re not super super dry.

    I went without eye drops the other day as I was having a freak good day (as often I find they make matters worse) and I went around a friend’s house (first time in a long time!) because we had some nice weather we were having a few drinks outside and all was well but when we moved inside within an hour my eyes had become really tired feeling and hard to move – they didn’t really hurt just kind of cloying and thick and it didn’t help when I put the Dwelle in.

    It’s strange but I often find they feel better outside than in a building. I know aircon and heating makes them dry out and feel heavy but even if there’s no heating etc on it can happen.

    The left eye still hurts in a kind of scraping way where the original twanging pain was - this is where the wood and hair were.

    I’m not sure if I have aqueous or lipid deficiency I’m afraid and I keep being dismissed before I can find out.

    I was taking 2000mg cod liver oil or flax but I think I may be allergic to Omega 3 because it gave me stomach trouble, dizzyness headaches, and made the sinus trouble worse. So I'm off it for now and my eyes seem maybe a bit worse, but hard to tell. I also take Moducare (in case anything auto immune may be happening I decided to be preventative) I also tried 600mg n-acetyl cysteine for a few days but worried it might break down my mucin layer? Has anyone heard of that happening?

    I've spent so much money, I just wish everything could go back to how it was 6 months ago, I'm very upset I have been limited so much in what I do. This is so depressing and nothing I do seems to make it any better, working on a computer all day at work is so tough, I'm scared I'll lose my job or my eyes and I haven't worn make up in months. I used to line the inside of my eyes with black eyeliner, could that have caused any problems I wonder?

    Well, thanks for reading if you made it this far! Sorry for the long post - it was quite emotional to write it all out actually.

    Thanks,

    Jess

  • #2
    Hi Jess,

    Wow, that's quite a story. I am really sorry for what you have been through. Gross incompetence maddens me: Just a little competent care in the early days can help so much to prevent things from escalating.

    I would really suggest trying to network with some of our UK members - irish eyes, little mermaid etc - about finding a better doctor who will at least answer your questions.

    The sharp pain, wood chip, hair etc all make me wonder if there was a kind of classic setup for RCE somewhere along the line. I do wish that first doctor had flipped your lids. Have a look through the posts and blogs about RCE - there are lots of strategies people use to get through the nights without damage & pain. The virus and sinus infection connection sure sounds like a strong contender too - it's a familiar story around here as something that kicked off a bad spiral of symptoms. If nothing else it could play into the pain factor. The doxy may have helped with your eye improvement too by doing something for the meibomian glands? just a guess.
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

    Comment


    • #3
      Hi Jess ~ So sorry to hear what's happening. We are southern England too and endured a similar miserable journey till I found out how to doctor-shop, and worked on what questions to ask. We need to find you a nice ophthalmologist that you like. Do you want to PM? I'm hoping you can get a proper assessment to start you off on a good spiral of improvement.
      bad spiral of symptoms
      Paediatric ocular rosacea ~ primum non nocere

      Comment


      • #4
        Jess,

        I am a 22 year old male with diagnosed dry eye...have your doctors figure that one out...no diseases just dry eye. Have these doctors done anything such as a schirmers test? My eye doc didn't do that at first and thought I had a little case but after I went in and told him I couldn't take it he did the test and diagnosed severe dry eye.

        As to your question can one eye tear less than the other? yes, my left eye produces half of what is normal and my right eye produces almost nothing.

        I know not what to tell you as far as leading you to a diagnoses but there seems to be a lot of anxiety coming from your post and I bet you're thinking about your eyes nonstop. First step to feeling better is getting that anxiety under control. Keep with the fish oil and the drop Systane Balance has been doing wonders for me. It's a non-BAK, it does have a preservative but this one doesn't seem to bother me. Refresh non-preservative I use on an especially dry day. Remember that preservative drops are meant to be used once every 4 hours. Using a preservative nonstop will make your eyes feel worse which I read is what you were doing (it's ok I did it to and it did make it worse). I was on eye drops about 20 times a day... now i wake up, use systane balance, use refresh non-preserve throughout the day if i need (which I don't need much anymore) and a systane balance drop once before bed.

        I really feel for you as far as not being able to find a doctor to take you serious. I see that you live in the UK which as I've been reading posts throughout the board doctors there don't seem to take it as serious as ones do in the states. Someone correct me if I'm wrong. I wish you well in your recovery.

        Comment


        • #5
          Hi everyone,

          Thanks so much for reading this and for all your advice and suggestions. Littlemermaid thank you for the offer of sending you a PM about finding a good opthamologist, I will do so

          Rebecca thanks for your advice, as for the setup for RCE did you mean that the woodchip and hair would have caused an injury that would have then made the RCEs happen? Normally when I wake up I can feel that the lid is stuck and just wait until it wants to open though or splash some water on it but on the few occassions where I have woken up in a fright such as a loud noise etc I think I have maybe damaged it a bit? My right eye is now starting to get dry and stick too now though so I'm wondering why that is. I've been off the BAK for nearly 2 months now so I would have thought it would be ok?

          My meibomian glands seem to be ok I think, if I do a hot compress there is tons of oil on my eyes afterwards and if I look in a good mirror with lots of light and pull my bottom eyelid I can see the dots of oil coming out and then when I close it, across my eye. The funny thing is though, the the oil sort of looks like an oil slick when it goes across my eye. It looks like a puddle of oil after it's rained or the sort of fragmented oily looking sheen you get on a cup of tea when you've left it to brew too long? Weird analogy but it's the only thing I can think of! I'm sure I couldn't see the oil on my eye before I got dry eye it just looked clear, so is that normal? I'm sure I read somewere during my research that the oil can become somehow different than it should be and even saponified so it is more like a detergent and damages the eye? I'm wondering if perhaps that has happened?

          Thanks for your reply Adam, sorry to hear you have this too and the doctors have no reason for it. You're right about the anxiety, I know I need to relax more and not constanty think about my eyes but I'm finding it hard. I hope that a proper diagnosis will help with this. I think what you said about doctors in the UK is right, it seems to me there is more awareness of treatments etc in the US, but there must be some good doctors here and I hope to find them! I'm glad to hear that you found a drop that is working for you, I'm not sure if we have it here, I tried normal Systane at one point but not Balance - I'll take a look.

          Jess

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