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    Old 07-26-2003, 09:04 AM   #1
    purple2067
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    Post new dry eye discussion

    Ok, lets all stay on topic here......

    I don't know about all of you, but my eyes have been just miserable, and not having a place to come and talk about it makes it worse.

    So, how is everyone?


     
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    Old 07-26-2003, 02:09 PM   #2
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    My eyes are so dry and itchy today that I got out of bed this morning, used a hot compress, stayed up for about an hour to check these boards, ate and went back to sleep with a cold compress! UGH!!! Once again, I woke up with a ton of yellow crust along my lashline this morning. When I used the erythromycin ointment I didn't have the crust. But I had a terrible allergic reaction to the ointment. Now I am back on the Vigamox anti-biotic drops again, but this morning I had the crust again since I didn't use the ointment. I really think that I need an anti-biotic ointment for a few weeks, to stay in there at night and really get into my glands and unclog them, but I am allergic to the preservatives in them!!! UGH! UGH! UGH!!

    [This message has been edited by moderator1 (edited 07-26-2003).]

     
    Old 07-26-2003, 07:34 PM   #3
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    Well anyway, Chris, I'm sorry that your eyes are feeling so bad... I can't clean either because the dust gets in my eyes and the cleaning spray always irritates them. But I'll give you a tip... when I do have to clean, I use the wipes that grab the dust, like pledge wipes. That way the dust doesn't really fly around too much, and there really isn't any cleaning products to irritate my eyes. But, the best way to clean is to have someone else do it for you.

    Today my eyes are so irritated, I just don't know what to do with myself. Well, actually I do know what to do. Pour in the FML and the tear drops, and go take a shower, wash my face and lay for hours with a cold compress. Isn't it sad that this is what my life has come to? I had to stay at my house tonight and have my friends come here, instead of going to my friend's house (she owns her own home). It just stinks having to hang out with my parents! But the reason for not going to her house is that she has a kitten. And I also can't really spend too much time outside, as any sort of air irritates my eyes. I don't know why they are so much worse today. I've got to call the doctor again on monday and let him know what is going on. In case you hadn't heard, it now seems that I've got some sort of infection under my eyelids or in the meibomian glands that is causing me to wake up with yellow crust on my eyes so that they are crusted shut. My doctor tried giving me erythromycin ointment but I had a terrible reaction to that, and now I'm using the Vigamox drops again but they're going to take a few days to work. I really want an anti-biotic ointment to use at night, but it seems that I'm allergic to the preservative in them, and I'm not paying Leiters however much money they want to make it preservative free for me! It'll expire before I can use the entire tube and would be a waste of money (although if my dr wants it I'd probably do it.)

    I just don't know what to do with myself today.

     
    Old 07-27-2003, 08:13 AM   #4
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    Purple,

    I have been following your posts for a while, and I have some comments to make. Remember that I'm an outside observer and can maybe see the "big picture" while someone closer to the situation (you) can't. Or maybe I'm totally off base

    First, I know you love your doctor, and you have faith in him and in Dr. O'Brian. I know they are trying their best to help you. But they have only made you worse. The cycle of drugs you are now using is just amazing. You take one drug, get side effects, take another to counteract the side effects, take a third to counteract the side effects from that one, ad nauseum. Meanwhile your eyes get sicker and sicker. Please consider getting another opinion from someone else. There is no ONE expert in any field. Dr. O'Brian might be great for most people, but maybe not for you. Don't take any one person's word as gospel, especially since you are NOT getting better. And yes, I realize that there isn't a cure for simple dry eyes, but you are at a different level altogether. Your fellow dry-eye sufferers aren't going through what you are, in my opinion because they aren't being overmedicated. Sometimes it sounds like (and I mean no offense) that they almost have you brainwashed into believing that you need all the drugs that you use.

    Second, it may be worthwhile for you to investigate alternate forms of medicine. It wouldn't hurt to see a naturopathic physician, at least just to see what he or she has to say. I think modern medicine is great, but all physicians know is to hand you drugs. "Here, take this." "Oh, you got bad side effects?" "Take this drug then!" "You're worse? Put this drug in your eye too!" How long are you going to let this cycle go on? They don't even know exactly what is wrong with you and they really aren't trying to find out. They're only treating symptoms, some of which they are causing by the drugs they are giving you.

    Just my opinion I hate to see you sitting there suffering, week after week. Find someone else who can actually help you.

     
    Old 07-27-2003, 08:34 AM   #5
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    Elyse,

    What snazzy says makes sense. Aren't you taking too many sort of drops/drugs? Maybe your eyes are irritated of using so many?
    Has restasis a chance of working while you're are taking so many other drops?
    Isn't it possible just to take artifical tears, preservative free ofcourse and restasis?(after you're healed)
    Won't you have side effects later on when you take the FML and other drugs now?
    We just don't want you to suffer so much!

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    Old 07-27-2003, 10:38 AM   #6
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    There's two sides to this, and I see both.

    I don't think naturopaths, or similary types of doctors, aren't a bad idea. Especially when nothing works.

    But Elyse seems to be way beyond the point of simply being able to stop medications. Maybe it has made her eyes worse. But when Elyse had to go without her FML for awhile, things didn't get better. It was a few weeks, wasn't it Elyse?

    Her doctor really wants to help her. From what she says, I doubt he's just throwing eye drops at her hoping they help. If he thought she was being over-medicated, then he'd stop them. At least, that's the impression I get of him from Elyse.

    No question, Elyse is in a tough spot. I'm sure she'd loving nothing more than just going with artificial tears.


     
    Old 07-27-2003, 01:45 PM   #7
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    Quote:
    Originally posted by iChrisi:
    From what she says, I doubt he's just throwing eye drops at her hoping they help.
    That's exactly what he is doing. I certainly wasn't implying there was any malice or uncaring behind his actions, but she is on a million drugs and she thinks she needs them all, because a doctor is giving them to her. What happens in the future when she gets cataracts or glaucoma from all the things she is putting in her eyes? They are all risky to use long-term. Meanwhile she hasn't gotten any better.

    (I apologize for talking about you like you're not here, Elyse)

     
    Old 07-27-2003, 02:01 PM   #8
    iChrisi
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    I see what you're saying. It's just that, from my understanding, she does a lot worse without the medications.

    She might have to deal with glaucoma later. In the meantime, she'd be suffering even more if she wasn't on them.

    There's no good choice.

     
    Old 07-27-2003, 04:46 PM   #9
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    No, I don't believe that my dr is just "throwing drugs at me". In fact, he's been very conservative. Right now the only meds I am using are the Restasis and FML, and for a few days I'm on Vigamox anti-biotic drops because I had/have an infection. But he waited a very long time to give me the Vigamox (about a month). We wanted to see if this infection would go away on its own, but it didn't. There is no way that he would just throw medicine at me hopimg that it works. For my dr, there is a reason behind everything that he does. So far he's the only one that's given a damn about me, so why would I go to anyone else? Most of the time when I go to him it is just for maintenance... he only changes my meds when I have an infection or a reaction. I'd love to get off of all of them, but it's just not possible. I also don't believe in naturopathic medicine because I'm allergic to so many things that I'd be afraid to try herbs, etc... I did use it when I was younger for other things (I was seeing a naturopath) and it made me so much worse. Ever since I was a child I have had severe allergies. Now it just seems that they have migrated to my eyes.

    I really don't feel like I'm being overmedicated at all.... there have been weeks when we've stopped all of my medicines to see what would happen (actually we did that last year for about 2 months) and my eyes were so dry that I couldn't open them. It seems that I'm allergic to any sort of eyedrop/ointment with a preservative in it and that is why I had a bad reaction to the anti-biotic ointment... not because I was being overmedicated, I had a reaction because I can't tolerate preservatives. My eyes haven't actually gotten any worse since they first started... actually they have gotten better... since I started this regimen of medicine (mainly the FML), I have not had a corneal ulcer, I have not had an abrasion, and my dry eye pain is significantly less. I actually do produce tears now! (but just not the right kind of tears).

    Normally the only prescription drops that I am on are FML and Restasis. Even those, we try to use the least amount possible to leep me comfortable. As of this moment I am on the Vigamox because of the infection (which I've got because of my clogged meibomian glands). But I've got to call my dr on monday and I'll probably see him and he's going to take me off of it very soon. He warns me about every possible side effect and is usually very reluctant to prescribe medication. But when you've got an infection, there's no choice.

    So like I said, normally I'm only on Restasis and FML. Occasionally we do try something else to see if that will work, but when it doesn't or I have a reaction to it, I come right off of it. I think my dr is only being as aggessive as he has to be. But he has helped me immensely. My eyes are dry now, but if you knew how dry they were before I started going to him, you would think "my GOD, how does this girl survive?" I was using tear drops sometimes 30-40 times a day because I was in so much pain. But he's gotten me to the point where I can live with it now, although it is still a major pain. I get my pressure checked regularly and at the very first sign of an increase, I come right off of the FML. He would love to take me off of everything, but it's just not possible. I used to think that maybe it was the medications that were causing my problems too, but it's not.... as long as I don't use a med with a preservative in it, the meds help me, not hurt me. I'm at the point now where as long as the medicine doesn't make my pressure go up, and as long as I don't have a bad reaction to it I am willing to try it. I get my pressure checked very very frequently and I also get regular eye exams almost every week, so if anything were to go wrong my dr would catch it. It may not sound like it, but my dr is being VERY conservative with me. But at times, he has to be a little aggressive.

    I'd love to go to someone else (this would be the 5th eye dr I've seen), but who else is there? After Dr. O'Brien, there IS nobody else! He is the world's foremost authority on eye diseases, and he agrees with everything my dr is doing. He travels all over the world giving talks on precisely my problem, and he even told me that I could not be seeing anybody better, that if anybody could help me it would be my dr.

    I really do appreciate all of the concern that you have for me, so I hope I don't sound angry at any of you. I just don't see any alternative to using these drops. (of course, on a day when I am feeling good I use them less.) My whole medical history is very complicated. I get allergy shots that seem to be doing nothing. I've definitely got some sort of auto-immune disorder that nobody can seem to diagnose, that is probably causing my eye problems. I'm not planning on being on all these drops forever... just until I can get a diagnosis and find something that works better!

    Thank you very much,
    Elyse

     
    Old 07-27-2003, 04:48 PM   #10
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    Quote:
    Originally posted by iChrisi:
    I see what you're saying. It's just that, from my understanding, she does a lot worse without the medications.

    She might have to deal with glaucoma later. In the meantime, she'd be suffering even more if she wasn't on them.

    There's no good choice.
    THANK YOU CHRIS!!! THIS IS EXACLTY MY DILEMMA!

     
    Old 07-27-2003, 09:25 PM   #11
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    Snazzy, I think I owe you an apology... I'm sorry if it seemed that I was shooting down your suggestions or being mean spirited in any way. I do sometimes feel that I'm being overmedicated, but when I feel that way I talk with my dr about it and he always works with me to find the best solution. As for getting cataracts or glaucoma, I do worry about that and so does my doctor. He worries a great deal about it. I know it doesn't seem that way because he is giving me all these medicines, but if you could be there during one of my conversations with him you would see that it is exactly the opposite. He is just basically trying to make me comfortable while he comes up with something else besides steroids. But in some cases, like mine, steroids are the only things that will work. At the moment I am more concerned with what if I stop the steroids and my eyes get as dry as they were in the past (which is what happened the last time I came off of all my meds... even though we waited well past the point of my having a rebound reaction to it to see if the problem would go away). What if I come off of them and my eyes get that dry again, and I develop another corneal ulcer. That's a very real possibility, and it's something I worry about every day. I almost lost my eye the last time I had one. If my doctor wasn't so knowledgeable and aggressive with the anti-biotics, I would be blind. I do worry about future problems, but I know that cataracts can be take care of with surgery, and I don't think I'll get glaucoma because we are so careful with my pressures. (there have been a few times though that they have shot up overnight, and I've noticed a difference in my vision and had to quickly go back to the dr.) But overall my pressures have been under very good control, with the exception of 2 or 3 times when they were too high over the last 2 years.

    It does seem like I am on a lot of drops, but really I'm not. In the past I have tried several different ones, but never a lot at once, and we always gave each medicine ample chance to work, and weaned me off of it properly before trying something else. Right now the only eye drops that I am on are FML (preservative free) and Restasis, as well as artificial tears. For the moment I am on the Vigamox antibiotic drops because I have an infection. We tried erythromycin ointment first, but it gave me a bad reaction. I do talk about a lot of drops, because like I said, I have used them all in the past. But not all at once, and not right now.

    So, I do want to thank you sincerely for all of your concern and your suggestions, and I hope you'll read this. I am going to try to figure out if there are any other doctors in NY who might know some more about this. But the thing is, there just isn't much out there for dry eye sufferers right now, and my doctor knows about all the treatments. I also really think that with all my allergies and intolerances, I'd be taking too much of a risk to try naturopathic remedies. But it is a good suggestion that I will keep in the back of my mind.

    (see, I'm not complaining. )

    Elyse
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    Old 08-01-2003, 05:46 PM   #12
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    Hi everyone,

    I had a blood test yesterday to check my level of both male and female hormones, as I still feel that in my case this has something to do with my eye problems. I will know the results next friday when I return to the doctor. Even she feels that this may all be linked. She then said that she may refer me to a female general physician who specialises in hormones. Will keep you posted on the results.

    I have also decided to consult a naturopath who specialises in chinese medicine , rebalancing the body etc as I have a number of other problems that may go hand in hand with my eye problems. I am sure the naturopath currently treating my daughter will come up with something that no one else has mentioned from a traditional medicine point of view so far.

    Elyse, in your case, I would be doing exactly what you are doing if I were in your shoes. You have no choice but to follow your doctor instructions and I know what it feels like to be desperate for answers. You have to try what they suggest. As you said, at least you can keep your eyes open now. It is a difficult situation but in my opinion, you are following the right path. Hope you are feeling better.

    Christine

     
    Old 08-01-2003, 07:07 PM   #13
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    Thanks Christine. Your support means a lot to me. I hope that the naturopath can give you some answers.

    I have also been active on a sjogrens forum that has a section for eyes. I'm going to that specialist at the end of august, and he deals with sjogrens. So, we'll see what he has to say. I hope your blood test results come out how you want them. (it's a tough one... do you WANT to have a hormone imbalance and finally get a diagnosis, or do you NOT want to have a hormone imbalance at all?)

     
    Old 08-08-2003, 05:36 PM   #14
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    How is everyone???

    I got my blood test results yesterday and it was pretty much as I expected. While the male hormone levels were OK and within normal limits, I have low estrogen and the results said that this suggests polycystic ovaries. This did not surprise me as I have a number of the symptoms. I am wondering if this also has some impact on my eyes. The way to improve the situation is to go on the Pill. I told my doctor that I would have to ask my opthamologist about this as I am sure I have read that the pill can also cause dry eyes and I would not want to make it any worse than it already is. It is good to have some answers because at least I have a chance to address it now while it is still mild.

    Hope everyone is doing well.
    Christine

     
    Old 08-09-2003, 06:04 PM   #15
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    Christine, I think I read somewhere that polycystic ovaries can cause dry eyes. I'm not sure though. At one time they thought I had that due to heavy, painful periods. But they did an ultrasound and I don't have it. Birth control pills can definitely regulate your estrogen. I'm on one now and can't say that it's making my dry eyes worse. They haven't gotten any worse since I've been on it. My problems started long before I went on the pill. I'm glad you are finally getting some answers though.

    I hope to get some answers soon myself. I am seeing the specialist for sjogrens on August 21st. I am still not sure if I have it or not. This board does not have a section for sjogrens though.

     
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