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Need help!!!! Very dry eyes and pain

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  • Need help!!!! Very dry eyes and pain

    Hello! I would be so grateful for some help.

    I’m a 20 year old girl living in Sweden and I have had so much problems with my eyes for around 2 years now. My eyes have always been sensitive but I did not have it this bad until a couple of years ago.

    My story: I have always had dry skin and eczema. When I was around 10 my eyesight changed for the worst and I now have around -6 in vision. But when I was younger, I refused to use glasses and talked my parents into getting lenses. I used really good one day lenses with moisture, but I used them so bad. Since I was really young, around 12 years old, I started using them every day and sometimes even reusing old ones and sleeping with them at times. I got eye infections occasionally maybe around 2 a year, but it went away in a couple of days. I lived a normal life and did not feel any dryness in my eyes.

    But when I was 18 years old, my left eye started acting up. I treated it with different drops from doctors, they thought it was an eye infection. But it did not go away. I continued using lenses but much less. When summer came and i turned 19 I quit lenses and got really bad inflammation in my eyelids. I also experienced that I got pimples or rashes under my eyes. I started going to a doctor who prescribed azyter that I use occasionally and doxycycline in case it was rosacea, but my face is not very read and I don’t have much visible veins. I still use doxycycline to this day. I also started doing hot compresses and massages and finally got a diagnose that fall, that I have blepharitis and dry eye. But my eye doctor says that it will come and go, that in some periods it will blossom up and then go away for a few years and then blossom up again. She thinks Is due to eczema or rosacea but she wasn’t sure.

    But as my eyes just kept getting worse and worse I started loosing faith in my eye doctor so I recently visited one doctor in Norway who is an expert in dry eye. He told me I have very bad dry eye and on the right eye I have lost about 26-50 % of my glands and on the other 50-75%. I feel so sad about this and my eyes just keep getting worse. I’m only 20 years old and haven’t even started university yet, my life has not begun. He told me that I have scars on my eyes but they do not affect my vision yet. Therefore he prescribed optanol which is steroid drops. He also prescribed ikervis that I will use after the steroid drops and when my eyes are a bit better he want me to get punctual plugs. I asked him about IPL and he said I could try it out but I had to start now since I don’t have many glands left.

    My eyes are a bit red but not very bad and under eyelids are inflamed, swollen and a bit red but still not very bad. They feel a lot worse then they look. I’ve never heard anyone mention that my eyes look red or weird so I don’t think it shows much but it sure hurts and my eyes never feel normal. Some days I can live as usual and some days I don’t go out at all and just want to die. but still I am not in as much pain as many on this website. I can still watch tv all day, with a little discomfort but I don’t have trouble keeping my eyes open. I can still go out and I don’t feel like wind or air condition makes my eyes worse which is weird. I want to a cinema and it wasn’t all comfortable but it wasn’t that bad, I could still watch the whole movie. I never wake up in the middle of the night because my eyes feel dry.

    The weird thing is that my right eye is the eye that really feels the worse and has for the last year even though that is “the good eye” according to the doctor. I use cationorm and hylo gel.

    I am in a lot of pain and would really like your help. What do you think I should do? Go to a skin doctor that can help me see exactly what’s wrong? Just continue my treatment and/or do IPL? Go to a different doctor? How about sceral lens? I use eye drops every other second to not feel this pain.

    I’m really lost and so sad. I don’t have much money since I had to quit my job, but my parents help to pay for my treatments. Still, I want to go to university and just have fun like other kids. But I can’t, because I feel like I would never be able to keep up with the studies and my dry eyes at the same time. When my eyes hurt I can’t think about anything else. I can’t concentrate at all. And going to university means a lot of screen time.

    If you have any recommendations for me that I can try to make my dry eyes better, please help.













  • #2
    Hello there!

    I am sorry you are feeling like that.

    But, as Rebeca says, you are not going to feel like that forever. It will improve.

    I would like to have some tips about what to do next, however I am not that person.

    I just want to bring a message of hope. I also have dry eyes for 10 years now. Is not a fun condition and I can relate with not being able to think in anything else.
    So, my advise is to take care of your mental health. If you need to take medication, don't worry it will not be forever.
    get out of the house. Do things. Many days you don't won't to.. but that will be good for your. At some point, you will be out with disconfort and not even notice.

    Take care of your health. Drink water, exercise, get some vitamin D. It's good to feel good.

    Go to college. with dry eyes I finished my master, got 2 promotions, got married and had a kid. Also travelled a lot, learn how to sew, change job... so it is possible, just hard but possible. But somewhere along the road it will be easier.

    So, please, be hopefull and fearless. Even when you don't feel like it.

    Also, there are new drugs in the pipeline!

    Be kind with you, but keep moving.

    All the best!

    Comment


    • #3
      Hi there,

      My name is Aidan and I work for the Dry Eye Foundation, which hosts this forum. We have a couple of groups you may find helpful.

      There's a dry eye support group in the UK that meets once a month. Their next meeting is tomorrow, the 10th. You can find a link to the Zoom meeting here: https://www.dryeyefoundation.org/calendar/2022/2/10/uk

      I also host a Zoom support group for younger folks with dry eye. We meet at 5pm Pacific (which is 2am your time). We also have a small Facebook group where you could post your story: https://www.facebook.com/groups/detmillennials

      I'm sorry to hear how difficult things are right now. Hopefully others on the Forum will be able to chime in as well.

      Best,

      Aidan

      Comment


      • #4
        I am sorry to hear that You have such problems with the eyes
        You could try out moisture chamber glasses and PROSE lenses or similar scleral lenses, they are quite promising and well touted in this forum and other places

        Comment


        • #5
          Hello

          You are asking for help and I have some helpful information

          You mentioned that You have dry eyes from unknown cause which I think usually means autoimmunization/inflammation
          Therefore You might be good candidate for special omega-3/6/9 diet or AIP diet treatment which is said to suppresses autoimmunization/inflammation

          There have been stories about people on this forum who, after being on special diet for at least half a year, resurrected themselves from their graves (recovered from dry eye disease)
          You can read about their stories below
          https://forum.dryeyezone.com/forum/c...ment-must-read
          https://forum.dryeyezone.com/forum/c...u-must-try-aip
          https://forum.dryeyezone.com/forum/c...ealed-with-aip

          I am tryng out this new special diet on myself now and I posted more information about this special diet here
          https://forum.dryeyezone.com/forum/a...ry-eye-disease

          I read that almost every person in the West has constant nutrients deficiencies in their diet. Especially these omega acids DHA, EPA, ALA, GLA and vitamins
          There is also a lot of information stating that deficiency of these above acids leads to dry eyes, dry skin and eczema which You mentioned that You have

          You mentioned that You live in Sweden. As far as I know there is quite not much sunlight in northern countries like Canada and Sweden, where dry eye disease is quite prevalent, there might be connection between those. Being exposed to the sun rays produces vitamin D in the body, so the sun is the source of vitamin D. Vitamin D might be helpful for autoimmune diseases

          Comment

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