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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
Hi guys,

Sorry I haven't replied in a while. I was having computer problems, but they seem to be under control at the moment! I just didn't want to go on the internet until I got my Norton Internet Security installed.

Christine, I am so glad to hear that you had an increase in tear production on your last schirmer test. It's about time for some good news! I think it's so ridiculous that the govenrment is still regulating Restasis so much though! I am glad it seems to be helping you though, even if it is taking so long. I can't wait until the Diquafosol drops become available. I need [I]something [/I] to work for me!

I went back to the eye dr today, and he was not too pleased. Apparently I have more than enough of the watery layer of tears, but even with the Doxycycline and hot compresses I have NO oil or mucus in my tears. For the past few days I have been getting a lot of tears running down my cheeks. Optimistically, I thought that maybe that was just because I had "too many tears". (as if it is possible!) But if that were the case my eyes would not be burning unbearably like they have been. My doctor said that I basically ONLY have water in my tears, and so they are not sticking to my eyeballs. What good is the watery layer without the mucus and oil layers?

He was really disappointed because we both had hoped that by now something would have started working. But the surfaces of both eyes look really bad. :(

Earlier you were all speaking about the different types of Doxycycline. The one I am taking has no special name. It is just called Doxycycline. It is a blue and white 50 mg capsule. I am taking 150 mg, so I take 3 capsules a day. My doctor started me out on a very low dose. The usual dose is something like 300 mg a day, but I have such a sensitive stomach that he was worried that the doxycycline might aggravate things. So he is increasing it very very gradually until we reach the desired dosage.

I found out about a new product. Well, it's not really new (been around for about a year) but it's the first that I've heard of it. It's called Nature's Tears Mist. It's simply made from Tissue-Culture Grade Water. It's not a drop, but a mist that you spray in your eyes. It's good for when I'm driving and can't stop to put drops in. It's available at most pharmacies, but it can also be purchased directly from the company on their website. Just look up Nature's Tears, and you'll find it. It doesn't help all that much, but it just makes my eyes bearable until I can get the tear drops into them. I brought it to my doctor today to show him, and he was so curious that he tried it on his own eyes! He said that it made his eyes feel slightly "smoother". That's a good way to describe it. We also conducted a little experiment. He examined my eyes and saw how awful they looked. Then I sprayed this stuff in them, and he examined them again to see if there was any change. There was not, but at least I didn't have a bad reaction to it! It does make my eyes feel slightly better, so I am going to keep it in the car and use it when I am driving.

The only good news that I got today is that I have no current infection. Maybe the hot compresses are finally starting to help.

Speaking of which, I better go use another one!

Hope everyone is OK,
Elyse
Thanks Christine! I am hanging in here, but it's tough. I just want to be normal again. My family is getting ready for a camp trip this Thurs and this will be the first time I've gone in the midst of dealing with all this dry eye crap. I have to make sure to bring my little tears vials and ointment. I don't want to find my eye stuck to my lid in an unfamiliar tent. :rolleyes:

I was awestruck to hear that you are my same age and have two little ones. I have a girl and a boy. They have been pretty oblivious to all of my discomfort, but they do notice that Mom cries a lot more and feels blue. That in itself makes me sad. We take our eyes for granted.

You said your symptoms came on overnight. Was there a particular thing that coincided.........an infection, or new contacts, allergy, anything?....etc)
The first opth I saw said that I might possibly have bleph, but it seems strange that it would be so sudden. He said I probably always had it, but that it only just started to become symptomatic. I'm not sure I buy it. (in my case, that is) Nobody has really been able to pinpoint where my problem lies. Is it Meiobian (MDG) or lacrimal? My Schrimer's was pretty low. Something like 4mm and 5mm. Not sure what it was before I actually began Restasis. I have mixed feelings about having stopped it. I was having an exceptionally bad day when I threw in the towel. I am seeing a new opth Thurs and will get his opinion. Have you heard of a tear test which is actually a tear analysis that tells you what your tears are composed of? I forget what it is called. Micro assay tear testing or something>?? I think that would be helpful. Not sure if my Dr's office has it. I cancelled an appt for tomorrow for plugs with the same Dr. I wanted to get a "3rd opinion." One thing about me, I am sort of neurotic when it comes to my health. I want to make sure I'm doing the very best that I can for myself and not do anything too drastic. I don't like to take drugs/meds as a rule either. The constant Doxy and Restasis made me uncomfortable with the amounts of drugs I was instilling every day. By the way, how long did it take for you to find some relief with the Doxy?? Was it months as they say?? It seemed to irritate my stomach at night and is it possible to make your mouth dry too?? I thought that was a side effect that I was having. Then I get concerned that maybe I have Sjrogens and I get anxiety about that too. A rheumatologist thinks he ruled that out, but in the back of my head, I'm still wondering.... Gosh, I wish there were some others nicer, fun things to fill my head with in the wee hours of the night. ;)

My husband and me (along with our son and daughter) have always been active, enjoy the outdoors etc, and dealing with this has been almost crippling. Do you use an ointment during the night? Any advice for a good one? Also, since you have such poor Schrimer's wetting, obviously you have lacrimal deficiency as well......am I correct? Can you cry okay?? My tears feel good, but they dry so fast. Sometimes I cry just for the sake of tears. And, I'm always self inducing yawning, because the slightest wettness feels good. If you have MGD caused by bleph, do you have visible particles in your lash line? How does one know that their meiobian glands are blocked? I see nothing visible. When I pull down my lower lid, I can see some slight liquid that looks oily that pools in the bottom. How would I know if I had a blockage? It is so confusing. For me, the nighttime is the worst. I dry out exceptionally bad and my eyes are often crusty in the AM. Much better after a shower. Most days I just deal with a moderately dry feeling and some burning. I dread night though. What artificial tears do you use/recommend?

Well, I know that I've asked you a lot of questions. I'm lucky if you can respond to any of them. Truely appreciated.

Amy





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