Announcement

Collapse
No announcement yet.

Newbie.........Help

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Newbie.........Help

    Thanks to all who read this poost and can offer advice.

    Around two years ago I started to get severe pain in my right eye. Soon after, I woke up one morning and my eye had swollen shut. My eye has never recovered. My eye would constantly feel sticky or watery and burn during the day and my eyelid would swell badly in the morning and gradually get better as the day progressed. Within a month of my first symptoms my right eye started to protrude.

    After being misdiagnosed a few times I was finally told that I had an inflammation of the orbit. I had an operation to remove most of the inflammation and was put on steroids.

    For over a year I went through hell with my eye. My eye would constantly feel inflamed and it looked terrible. When I was going through a very bad flare up my eye would look horrific. It would look extremely tired, haggard, lazy and glazed over. I was also left with a bad scar from the operation which mad my eye look ten times worse. I quit my job and pretty much stopped going out at this point. I know it's not in my head because one day my mother was visiting (during a bad flare up) and she wanted to drive me to hospital it looked so bad. People kept asking if I was seriously ill. Even my friends had to admit that my eye looked freakish.

    Everytime I would go to the doctor he would provide me with more steroids. Finally he told me there was nothing more surgically he could do without risking damage to my eyesight and referred me to someone else.

    I had thought that all my problems had been down to the orbital inflammation but when I spoke to the new doctor he told me that I may be getting incomplete lid closure secondary to the orbital inflammation and prescribed me with viscotears eye gel.
    I left the consultation in tears. I had been prescribed eye drops by my doctor over a year ago when he misdiagnosed me and told me I had a "minor eye infection". I thought there was no hope left for me.

    After about two weeks of taking viscotears I noticed that I had not had a major flare up and that my eye had started to look healthy again. This was the longest time in over a year that my eye had looked and felt reasonable. I started to have hope again that i could live a normal life. I started making plans and meeting up with friends again. I thought I had been cured. I then had a very bad flare up again. This time, however, it lasted only a day and not two to three weeks. For the next few months my eye remained like this. I would have good days and bad days but my eye at least looked reasonable 60% of the time. Previous to viscotears it was about 20%


    I saw the Dr again and after telling him my eye had improved a little he said he thought I had blepharitis and hayfever like symptoms in my right eye. He told me to start doing lid scrubs and warm compress twice a day and continue with the viscotears. I've been doing this for two months now. I have to wait two months to see the doctor again.

    Since I've started this new regime sometimes my eye looks completely normal but it still looks inflamed sometimes and very oily, glazed over and extremely tired at other times. My eye is now around 75% recovered. It still burns quite lot though. During a bad phase now, If i look in the mirror when I blink I can always see oil moving across my eye no matter how many compresses or massages I do.

    Does anyone have any suggestions on how to improve it further?

    Im wondering if my eye is producing too much oil or not enough. Has anyone experienced a very oily looking eye at times, especially when blinking? Also, I was told that the compress, massage and scrubs would start to work after 4-6 weeks. I've been doing it for two months and although my eye has improved a little more it's not cured. I've tried a few other drops like dwele, freshkote, clinitas 3 and clarymist but they didn't stop the burning or improve the appearance. I've been reading about azasite but it doesn't look like I can get it in the UK. I'm thinking of trying a new type of drop because the doctor told me I have hayfever like symptoms in my eye, which is very annoying when it happens, and so an antibiotic drop or an anti allergy drop may help. Can anyone reccomend any that are UK available.

    I guess I should be happy because a year ago I thought I had no hope left. My eye was totally unstable. Now it has improved a lot but the symptoms have remained. It's difficult planning your life when you know tomorrow morning you could look terrible and ill but by the evening you could look fine again or vice versa. And sometimes when my eye looks fine its burning which makes me feel uncomfortable. Something as simple as an eyeball has almost ruined my life and is all I can think about most days. I really want to fight this next year because I know I can't let it control me but it's so difficult when you've had 5 good days and all of a sudden your eye looks inflamed again. I'm always living in fear of my next flare up. I really need help with this and the doctors seem to think that it's not serious. Can someone offer me any more advice?

  • #2
    Hi,

    I'm sorry to hear about this weird and hard-to-diagnose problem. (Oh, and your screen name! It was funny-cute, until I read your story! You've been through a lot.)

    I am glad that you found some help. To add some new treatment, you may want to try using Tranquileyes goggles. It could benefit you in two ways-- First, it might help lid closure during sleep, and, second, if you get the warming inserts, it might help like your compresses do.

    I hope that you find something that will bring you back to 100% normal! Let us know how things improve.

    --Liz

    Comment


    • #3
      Hi,
      I really sympathize, but think about the improvement you have made, hopefully things will continue in this direction.
      Have you tried to figure out what might cause your current flare ups? For example, if you have been drinking alcohol the night before, does your eye feel worse the next day. Or if u have been in a smokey environment? Or certain foods? Anything, just try to figure out if there's some pattern. That way, u can figure out what to avoid.
      Good luck.

      Comment


      • #4
        a fuller picture

        I share liz56's enchantment with your screen name, new friend, and also her compassion for your ordeal. You are trying many very smart strategies, and getting some results, but I am wondering whether your doctor(s) is/are clear enough on what aspects of your symptoms are attributable to purely surface/anterior segment problems, and what aspects may relate to the orbit condition that prompted your surgery. In other words, I'm wondering whether the original problem has yet been fully resolved, so that you can move on to take care of the cornea/meibomian gland/tear film concerns.
        <Doggedly Determined>

        Comment


        • #5
          Thanks for the advice. I've ordered some tranquileyes goggles and will give them a try. I'd really like to try Azasite as well because i've read that it has helped some people with Bleph. Unfortunately, it's not available in the UK.

          I've tried several lifestyle changes to try and isolate the cause of this disease but nothing has helped. My eye flares up randomly but if i'm having a bad spell it will last a few days and a good spell is the same. The rest of the time my eye is up and down. When I wake up in the morning it's fine, around midday it starts to look oily, cloudy and inflamed and towards late afternoon, early evening it usually settles down again.

          As far as my doctor is concerned, i'm not sure he knows himself. He's told me the orbital inflammation has burned itself out and so the bleph is causing my problems now. However, he only told me I had bleph when I told him my eye burned a lot, looked very cloudy and oily and my eyelids swelled sometimes. I think I may need to pay for some proper tests to find the root cause. If bleph is caused by blocked oil glands why do my eyes look so oily?

          I've been doing the compresses for two months now and although my eye is a little better it's still not under 'control' like the nhs leaflet says, and nothing seems to soothe the burning. I think I have chronic inflammation somewhere in my eye. Although my eye has improved a great deal over the last year it is still always on my mind because I know the next flare up is never more than a few days away no matter what I do.

          Comment

          Working...
          X