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New to dry eyes... am having a really hard time with this. Help me.

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  • New to dry eyes... am having a really hard time with this. Help me.

    Hi everyone,

    I never had any dry eye issues at all until about a month ago (maybe a little more). I went to Hawaii in August and came down with a pretty bad sinus infection and pink eye along with that. I was treated for bacterial pink eye, and that resolved, but after I got back from vacation, I had viral pink eye (and a series of colds) back to back because my immune system was shot (also, who knows what I was exposed to flying across the world). I finally went to my eye doctor at the beginning of October to just make sure nothing worse than viral pink eye was happening (at this point, I experienced no pain and no dry eye symptoms) and she said that it was in fact viral pink eye, but to "make me feel better" quicker she put me on tobramycin for 3 weeks, tapering after one. At the time, I knew nothing about this toxic eye drop.

    I did what she prescribed and after a week, my eye looked great. About halfway through the regimen, however, my eyelids swelled up and my eyes, especially my left eye, got very itchy in the corner and I was waking up with my eyelids stuck to my eyeballs. Two weeks after I stopped taking the tobramycin, I was experiencing a clear, stringy discharge from my eyes and burning/itching from my left eye (but still, my eyes were not too dry). I went to a different doctor who looked at my eyelids and said "blepharitis" without actually doing a thorough exam. I told her I was on the tobramycin for 3 weeks prior. Instead of doing a culture (had she done one, she would have discovered I was actively still undergoing an allergic reaction prompted by the extended use of the tobramycin) and did NOT have blepharitis as a long term disorder - I was experiencing an acute flare up of my eyelids (first time ever) because of the tobramycin toxicity. Of course, at the time, I didn't know that.

    She prescribed tobramycin (again) and tobradex (ointment form) and told me to do the tobramycin 4x a day and the tobradex 2x a day on my eyelid margins, and if I "didn't get better in a week, come back." Well, I made it just over 24 hours with the new medication when it was like a bomb went off in my eyes. My eyes started burning like I'd put icy-hot in my eyes and they swelled up even more. My eyes became glassy and the tissue around my eyes (eyelids, conjunctiva, skin around my eyes) turned purple and the veins/arteries in my eyelids popped out and started to bulge. The artery between my eye and nose popped out and has been throbbing ever since (about the very end of October). I also developed some facial numbness/tingling that STILL comes and goes, and I got a horrible case of oral thrush the day of the reaction. I went to the immediate care and he said it looked like an allergic reaction. I know now that basically, the 3 weeks of tobramycin gave me a low grade drug allergy (had I done nothing after that and never taken the tobramycin again, my eyelids would have eventually gone down and I might have been fine). That low grade allergy primed me for the big event, and when I put the same medication back in my eyes (at a double dose!) my eyes exploded.

    Since then, I've been to several different eye doctors. One took one look at me and said "severe dry eye, blepharitis, and ocular rosacea" while I was still actively going through the major allergic reaction. She put me on restasis, erythromycin, and lotemax. This was a huge red flag to me because nobody can be sure if I developed an allergy to the tobramycin OR the benzalkonium chloride (preservative in the drops), and she threw me on the lotemax which has the SAME preservative. I also was still going through the allergic reaction, so I didn't want to start the restasis right away. The doctor told me "it's pretty clear you had a toxic reaction, but that's not important now. Let's move forward. You probably would have gotten dry eyes someday anyway." I'm 28 by the way.

    I ended up at a different doctor a couple of days later (Columbia University Hospital) when the burning pain in my eyes made me unable to open them. I took off work and spent the day in a dark room with my eyes closed, and it was when my waterline skin started peeling off like a sunburn I thought I really needed to go to someone else who would take my allergic reaction seriously. As soon as the doctor and the fellow under her saw me they said it was clear I had an allergic reaction because they could see the battle wounds in my eyes, whatever that means. They said, however, that my eyes didn't look that dry and they thought whatever damage was done could eventually be reversed, and they were firm that I did NOT have ocular rosacea - just an allergic reaction. They said I was probably still having the allergic reaction (this was exactly a week after my eyes blew up) and that they thought the other doctor's diagnosis was completely wrong. They did a schirmer test which was fine, but the other doctor had one of those tear osmolarity (sp?) things that gave me a reading of severe dry eye. At that point, I'm not surprised I had severe dry eyes because they were still on fire (again, like icy-hot in my eyes). So, the new doctors put me on non-preserved methylprednisolone to try to get the inflammation under control.

    I was on the methylprenisolone for a week, 4x a day, and went back for a follow up. My eyes were starting to feel and look better, and they told me to stay on the drug for another 3 weeks, each week tapering down a drop. My GP told me to get off them as fast as I could so I admit I tapered faster than that. I did 5 days on 3 drops, 3 days on 2 drops, and another 5 days on 1 drop. I felt SO much better last week (I was doing 1 drop) and there were a couple of days where I didn't even need to use my theratear drops or anything! So Monday (4 days ago) was my first day steroid-free, and that day went pretty well. Starting Tuesday, I started having slight pain, and every day after that has escalated. I'm back to having constant stinging (feels like there's shampoo in my eyes), and my eyes feel very dry, as well as the skin around them. I use drops about once every hour and they don't seem to do anything. When I wake up in the morning, my eyes open much easier than they did before since my eyelid inflammation has subsided, but my eyes are still burning/stinging and they get slightly red (as well as the underside of my eyelids) by evening.

    Unfortunately, this is the worst time of year for this to happen. I live in New York City, and everywhere you go - my apartment included - is like the desert. Radiator heat from 80 year old pipes flows freely through everything and it makes my eyes so much worse. Oddly enough, my eyes feel better when I'm outside in the fresh air, even if it's cold and windy. I bought a humidifier, but that seems to do little. I work 40 hrs. a week in front of a computer, which only seems to make matters worse. I really try to blink purposefully and take breaks but by the end of the day, my eyes are still sore and hurting. I will say, watching TV at home doesn't seem to make my eyes any worse, and if anything, my eyes improve slightly in the evenings, even while watching tv. Since stopping the steroids, I've been getting slight facial numbness again. After the reaction, I had bloodwork done to see if I triggered an auto-immune issue, and my bloodwork is fine.

    So now I have a month before going back to the eye doctor, and I'm really upset and worried. I have CONSTANT stinging in my eyes, and there isn't a 5 minute period that goes by that I'm not aware of how they feel. I'm so depressed and my anxiety is through the roof. I've spent so much money since this started (at least $700 on copays, medications, eye drops, vitamins, etc.) and I cannot foresee a lifetime of this extreme pain. I'm only 28. I can't do this for another 50+ years... I just can't. Every day is a struggle. I don't know if this is permanent or exactly what is still going on in my eyes, and everyone seems to have a different opinion.

    I feel like I can't do anything I love doing, and if this is permanent, how do I go on with a normal life? I make my living at my computer; computer use makes things worse. I have sinus issues with humidity; now I need humidity for my eyes. I live in NY where all the air is hot and dry in the winter indoors; do I have to move now? I love reading and watching tv; do I have to cut that out of my life forever? I am not wealthy but I'm spending a fortune on preservative free eye drops and doctor visits. Up until a couple of months ago, my eyes were perfect, and now they're destroyed. I'm so angry at the doctors who allowed this to happen with irresponsible drug dispensing, and I'm angry at myself for not doing research before I put anything in my eyes. I had no idea dry eyes were not fixable. I wish I had a different chronic problem - with my eyes, as you know, you can't get away from the pain. You can't just do something else and try to forget about it. You need your eyes every moment of your life. I'd rather be blind with my eyes closed than have this pain.

    Somebody please tell me life gets better. I'm taking theratears nutrition and other vitamins, etc., and I'm using Chamomile tea to try and soothe my eyes. I don't know what else to do. The past few days my sinuses have been reacting to the weather, which only makes my eyes hurt more. I don't know how I can get through this.

  • #2
    So sorry you are going through this. I will reply with a little more later but during those flared up times, here is what helps me (non-prescription related stuff):

    ICE. Get some cold packs on your eyes. Put the cold packs on before and after drops, since I'm sure everything is stinging right now. Put them on at work every few minutes or so if you are forced to look at a computer. Your eyes won't look better but they'll feel better temporarily.
    Audiobooks. Resist the urge to look at screens whenever possible.
    Omega 3's are good but they'll take time to work. 2-3 grams of good quality fish oil is usually the recommended dose.
    Moisture chambers could help you right now as well. Rebecca has some good information on those on the home page.
    You may have to experiment with drops. Some of the preservative free, even the "for sensitive eyes" formulations, can sting on really inflamed eyes. Theratears didn't work well for me, but it works well for some on here. I'm still searching for my golden goose as far as drops, but generally I would do web searches for reviews on different brands, or do searches on this forum.

    By the way, warm moist packs (heat a potato or rice wrapped in a cloth in the microwave) work for some as well to get the glands flowing, but I found that cold is what stops some of the pain.

    All this until the inflammation is a bit more under control, which could take some time. More later. Hope you get to feeling better soon.