Blepharitis / new member introduction - Eye & Vision Message Board

iChrisi · 05-01-2003, 08:59 PM

Hi everyone! I've been reading this board for months now, and I figured it was time to introduce myself since I feel like I know some of you by now. This is my whole story, and it's pretty long because I need to talk about it somewhere, and no one seems to understand.

In January I tried to wear contacts for the first time in years. I had a feeling then that my eyes got red sometimes, but I made the mistake of not mentioning it at the appointment. I got fitted for contacts and everythign was fine for a couple weeks. Then my left eye got really red and I had a burning/stinking feeling in both eyes. I went to an optometrist who diagnosed with me with conjunctivitis in my left eye and gave me Tobradex. I went back a week later when it had done nothing for me and all he said to do was add artificial tears. If it wasn't better in a week I should see an opthamologist. He insisted my right eye was fine.

Well, the next day I called one and was fit in that day. He said that he agreed and had me on Tobradex, Ocuflox, and Pred Forte all at the same time, but that I also had developed a corneal ulcer in my right eye...all of a sudden. For two months I continued to see them being bounced between the opthamologist and the optometrist there who kept declaring everything looked like it had cleared up, despite the fact that I still knew my eye was pretty red at times and burned. The last time there they said that and I just said okay and left it alone.

The next day I was on the phone trying to find someone who could see me that day, because it was just unbearable that day. They were great and, I think, finally helped me and gave me a correct diagnosis of blepharitis after several visits. They spend 2 1/2 hours with my at my first appointment to get my whole history and examine my eyes. For the past three weeks I've been doing the warm compresses and lid scrubs, and artificial tears for much longer. There's been improvement, but it's not yet to my satisfaction. I also have a touch of GPC they said, but they didn't think it was enough to cause these problems.

Despite how much better I felt with them, I think I need to see an opthamologist for treatment. I liked them, but I'm going to take Elyse's advice and see a corneal specialist on Monday. I doubt there's much more they can do for me, but you never know. Besides, the other place didn't take my insurance...I was just desperate so I saw them anyway.

Okay, so I ended up telling the whole story...but I need to. Everyone tells me they don't notice any redness (it's not a bright red usually...just a pinkish overall color). While it's better than it was since I've done the warm compresses and everything, I understand most of what everyone has said in other posts here. I've had the doctors that said everything was fine when it clearly wasn't. I have the family and friends that tell me maybe it's all in my head. Not to mention that I work full-time currently and for about three months I was barely able to do my job since I work on a computer all day.

So I have blepharitis apparently. My left eye always has some redness ranging from very slight to completely red, particularly in the morning. They burn when I look at the computer and sting when I'm walking down a hallway. Clearly they're dry, because I do have some glands clogged I was told. At this point though, the burning is totally manageable...for now. It's more the redness that still bothers me.

This whole thing is starting to get to me more and more and put me under a lot of stress. I'm only 21! I'd never want any of this, but if I had to, I wish it'd happen a lot later in life. Elyse..you have it much worse than I do, and we're about the same age. How do you manage?

Anyway, sorry for making that so long, but I had to vent since my frustration has been building day after day. I'll be participating here more in the future, because I need some sort of contact with people who understand.

Thanks for reading!

Chris

DonnaDe · 05-02-2003, 11:32 AM

Hi Chris!

Boy, can I relate! Your story sounds similar to mine. I'm not sure if you've read my whines

but they all have "blepharitis" in the title. I know exactly how you feel. I'm glad you've at least got the burning under control. I haven't been able to do that and it's so distressing to live every day in agony. And people (except for us here) just don't understand. I've been told everything from "Just don't think about it!" to "Trust your body to heal itself." Uh, yeah, thanks for the advice.

Has anyone mentioned the oral antibiotic doxycycline to you? I can't take it because I'm allergic (figures) but it's the one antibiotic that actually works on the malfunctioning oil glands. You might also want to see a specialist... that would be someone who is an external disease specialist in ophthalmology. I saw one a couple of weeks ago who was unable to help me, so I'm seeing a different one next week. Don't give up! I think a lot of doctors don't listen and are willing to dismiss you very easily, so it is important to find just the right one.

My eye problems started when I was taking Zithromax antibiotic for acne. Every doctor has dismissed any connection, but I swear my eyelids hurt whenever I took a dose. I was talking to a friend yesterday and I had completely forgotten her husband is a pharmaceutical representative for Zithromax. She is going to ask him if he has any info supporting a connection between the antibiotic and eye problems. My friend is a cytopathologist, and she feels certain that such a thing could indeed happen, since Zithromax is a tissue-based drug and is designed to be stored in one's tissues. I'm kind of excited and hopeful that there is some concrete data I could show the specialist at my next appointment. If it is true, I just hope I didn't do any permanent damage by using Tobradex ointment for five weeks at my doctor's insistence. Tobradex contains tobramycin, which is the same family as Zithromax. I wish now that I had insisted on something else, but I figured, well, he's the one who went to med school....

Anyway, my point in bringing that up is to see if you had any possible triggering factor that you can think of too.

Other than that, know that I completely understand. I know you're only 21, but believe me, it's no better to have this at 42

But, you're right, 21 should be a carefree age! At times I don't deal with this very well, and this board has been a tremendous help. I can't whine to my family and friends 24/7. They don't really understand anyway. Hopefully, coming here will make you feel better too.

Try not to give up hope,
Donna

iChrisi · 05-02-2003, 12:23 PM

This board has already helped me tremendously just by reading everyone's posts over the past couple months. I have read all of your posts, and I'm sorry about what you've been going through. I know you haven't had the best of times with this. It's nice to be able to read about other people who actually understand and won't say "did you ever think they just hurt because you think about it all the time?" I'll admit that I have become pretty obsessed with it, but that's not why they hurt or are red.

I have heard of doxycycline. In fact, I was on it a couple years ago for acne. I stopped taking it because it didn't do much of anything for me. I have been on minocycline again though since January, which I've read can have the same effect as doxycycline. I had been taking it for about two weeks before these eye problems got out of hand. So it doesn't seem to be doing much good for my eye problems.

The only real trigger I can think of is that perhaps I've had this awhile and I just didn't notice. When I got contacts in January, it aggravated the condition and made it what it is now. And to think just prior to this I was contemplating LASIK. That wouldn't have been good.

The burning my eyes feel have been a little worse again today, but still manageable at least. But the opthalmologist I see on Monday is a corneal specialst, but the biography I read about him at their web site also said he specialized in dry eye and ocular immunology and inflammation. I hope he can help. I'm tired of trying a different doctor every month.

DonnaDe · 05-02-2003, 12:36 PM

That specialist sounds good. I hope he can help you too. I intend to go to a million specialists until I get a straight answer. I hate this "you have blepharitis, no you don't" nonsense. But I know what you mean. I'm tired of it too. I'm tired of repeating my story. I'm tired of going in full of hope and coming out no better off. I'm tired of living with a mystery ailment day in and day out. I'm tired of seeing a new person every few weeks. BUT I'm not giving up so easily, since I'm in pain. Pain isn't normal. *Something* is causing it, and I know someone can give me an answer.

purple2067 · 05-02-2003, 08:59 PM

Hmmmm.... How do I manage it?

Somehow it has just become part of my life. That is definitely not a good thing, but I think that I am able to manage it so well because I am no longer surprised by it. I don't like it one bit, but rather than trying to live my life around the discomfort in my eyes (which is pretty much 24/7 lately) I just carry dozens of vials of tear drops with me (I bought a special make-up case just for eyedrops!), I make sure I have enough of my prescription drops, and I rest when I need to. I have made it a habit to use a cold compress at least once a day (that helps immensely!). I try not to let it stop me from doing what I want to do. I mean, there are just some things that I cannot do, like being outside on a windy day, or being around cigarette smoke, etc... And there are some days when my eyes are so bad that I just have to stop what I am doing and come home (can't tell you how many classes I've missed this semester because of that!) I just try to roll with the punches. Like I said, nothing surprises me anymore. I was totally SHOCKED when I had the corneal ulcer and it took almost 2 months of treatment to go away! But that was over a year ago and I have learned so much about this condition since then. If only I had known about healthboards while I was going through that!

Healthboards and all of the wonderful people here has really been my life support. It's great to have a place to come and share stories, get advice, and just complain without anyone saying "oh come on, it can't be that bad"

I think the most important thing is to have the support of your friends and family members, as well as the support of a good doctor. My parents have always been there with me, driving me to manhattan and brooklyn for doctors appointments....even going so far as to stay overnight with me in Maryland to see Dr. O'Brien at the Wilmer Eye Institute. But it took my other family and friends a while to come around. My best friend still really ****es me off sometimes. But ever since she started getting the occasional eye allergy, she has stopped saying "oh, come on, it's only your eyes."

Even the children in the elementary school that I work at have been extremely supportive. I hear from adults all the time "oh, your eyes look fine, so how can they feel so bad. It can't be true" But the kids are great. "Ms. B, you need a hug." "Ms. B, howcome you need eyedrops?" "Do they hurt?" "I hope you feel better soon." Today, my fifth graders saw me putting in my drops and they got really curious, so I explained a little bit about this to them. I explained how sometimes my eyes get very dry and I don't have any tears. They said "does that mean you can't cry?" We had a nice conversation and I explained to them that when they see me putting in eyedrops, they don't have to be worried because it's normal for me... it's just something that I need to do.

That's what I've come to believe. All this using eyedrops and running to the doctor, it's just something I need to do. It's part of my daily routine now. Get up, put tear drops in (before I get out of bed), brush my teeth, get dressed, use Restasis, have breakfast, use tear drops, go to school, use tear drops, go home, go to the eye dr, etc.... It's all very common for me now. But that is rather sad, that I've had to get used to all of this. The one thing I can't get used to is how other adults look at me funny and tell me there's nothing wrong. How would they like to walk a day in my shoes? I absolutely cannot stand it when people tell me "my eyes were so itchy yesterday... for 15 minutes they wouldn't stop itching." OK, take that and multiply it by 100%, have it 24/7, and then you've got about half of what I (or all of us on this board) have. When your eyes have been giving you problems 24/7 for a few weeks, then come talk to me. If not, get away from me because I'm jealous! I don't mean to sound nasty, but that's just how I've come to feel. Or at least, if someone is going to tell me their eyes are bothering them, then they should try to go to the dr and find out what is wrong, and then follow his directions and do something about it instead of just sitting there and complaining. I take a very pro-active approach with my health. I don't expect anybody else to understand my condition or do anything for me if I am not willing to try to help myself. My dad gets the occasional eye allergy. My entire family has started going to my eye dr. So, my dad makes an appointment with him every time his eyes itch. He gives him an allergy drop and tells him to use it for the entire hayfever season. My dad uses it for a few days and then stops. Then 2 weeks or a month later when his eyes are itchy again, he wonders what is wrong and goes back to the eye dr!

I have to say that basically the entire reason that I have been able to get through this and stay as sane as I am is because I have a fabulous doctor. He has really become my friend. He has never once said to me "YOU are going through a lot." It's always "I can't believe what WE'VE gone through together." or "Don't worry, WE'LL get through this." He is genuinely upset when I come to him and I don't feel well. More than once he has told me "you know, last week when you came in with that problem I was really scared, but I wouldn't tell you then." If it wasn't for him, I never would have survived that terrible ulcer. He took such good care of me. I have quite a unique relationship with him. I feel like he is holding my hand every step of the way.

That's why when people tell me how much of a hard time they are having getting their eye drs to treat them right, I can definitely understand it because I have had other kinds of doctors over the years who have treated me like I am crazy. But I am so grateful for my eye dr. There is truly nothing he would not do for a patient. For example, I have his cell phone number, email address and pager number, and I have been told to use them as much as I want. And believe me, I have done just that! I would never take advantage, but there was a time when there was no other way for me to get in touch with him but on his cell phone. I'm not sure if any other patients have been given that privelege, but I am sure if they needed him he would be there.

Now getting back to friends and family.

The way I see it is this: WHO CARES what your friends and family think... if you know that you are sick and you are suffering, that's all that matters. And if there ever is a time when I want to complain to my best friend (who at times can be very selfish) I basically tell her "look, for months you have been telling me about your problems and I have listened. Now YOU are going to listen to ME and I am going to talk for as long as I want to, and if you are my friend, you'll just listen and offer me a shoulder to cry on."

This may sound strange, but in a way I am glad that there are all of these other people out there with the same problems as me. I would never WANT anyone to have these problems, but I am glad to have people to commiserate with. Chris, it's especially nice that we are both young. I thought I was the only young person in the world with this. Have you ever been tested for Sjogren's syndrome? I used to feel sorry for myself, being so young and so miserable. But now I think this is just part of my life, and if I'm going to feel sorry for myself I'm never going to get anything done.

We all just have to keep going and try to stay happy.

That's not to say that I'm not absolutely terrified that this is never going to get better. I just don't let that consume me. Instead, that fear is what drives me to help myself.

I hope my little sermon here has helped in some way! LOL!

If you need to talk I am always here,

Elyse