I wish I would have never worn contacts!

[Lucy]

Neil, you haven't been around Homes perchance have you? Just checking, my friend.

OTOH, perhaps you need to be. (kidding)

[Julie1]

Thank you!

Hi all,

I cannot believe the responses -- you guys are all amazing! I'm sorry that I did not post a response earlier today. I was at work all day today, and my company has blocked this website (among many others). I really didn't intend to "spill my guts" last night. I guess I just had a bad eye day yesterday, then when I read the information about neurotrophic keratitis, I just lost it.

I realize that I may not be able to pinpoint exactly what caused my dry eye, and I can speculate all I want and cry for hours on end. But it will not do me any good. In the end, I just have to deal with it, and that is what I am going to do.

Calli - I agree with you that the contact use is not the sole cause. The medications most likely had some contributing factor. I am looking forward to reading Dr. Latkany's response to your question. Thanks for letting me know that it's okay to vent on the board.

YGB - Thanks for your encouragement to develop a more positive attitude. I need to focus on here and now, instead of what will happen when I am in my 40s. I agree that it is hard when the progress is so slow, and it seems that my healing has leveled. But, I need to stay positive -- there may be more ways of treating dry eye in the next five, ten years. At least there is some hope out there.

DEZadmin - Thanks for letting me know it's okay to vent. I did feel better after doing so, and it really helped to know that there are people who want to help and provide encouragement.

Skygoddess - Thanks for letting me know that I am not alone - it really helps.

Diana - Thanks for the encouragement! I know that worrying about what's going to happen to my eyes in the future does not do myself any good and that I need to stop feeling guilty about wearing contacts and taking meds. After all, I don't know exactly what caused my dry eye, and I did not intentionally intend to harm myself.

Neil - I am so sorry that you are going through some rough times. I have been thinking about you a lot lately and hoping the the Boston Sclerals are working out for you. It sounds like you are making progress, however slow it might me. Please keep me posted about the steps you take to make the Sclerals work for you. I hope that your grandmother and your mother are doing better and that you start feeling much better. I also hope that your dog is alright -- such a cutie! Thanks for the encouragement!

Kakinda - Thanks for the encouragement. I am trying to fight this thing with "all my might!" Some days are much easier than others, though.

Sazy - Thanks for your response. I agree that we need to keep going and to stay hopeful that things will get better. No, I do not have any autoimmune diseases; I was tested twice for pretty much everything. I don't any other symptoms except painful dry eyes. I really feel that I can relate to your experiences with the contacts and taking a medication that set me over the edge. I don't know the percentage of causation for each factor, and it really doesn't matter. I have dry eye now, and I just need to deal with it. It's easier said then done. I just thought of something that may help you with the guilt component. Maybe I would have gotten dry eye anyway even if I had not worn contacts or taken the medications that I took. Maybe something else would have caused my eyes to become dry or maybe I am just genetically programmed to have dry eyes. Just a thought...

Anyway, thank you everyone for your responses. I had better day today. My eyes burn just as bad as they did yesterday, but I tried to be more positive today. I gave up crying for lent, and it hasn't really worked too well lately. I'm going to try again, and I'll just think about all the good things that I have when I feel down. I'm just going to do the best that I can and hope with all my heart that someday that there will be more that can be done for dry eyes.

Thanks everyone!

- Julie

[Julie1]

Diana -- I tried to send you a PM, but your mailbox is full.

[kakinda]

.
Trying to find an expert in the BAK-sinus connection. These days, they say not to use BAK-preserved nose spray for > 3 days. I used it (eye drops) for 6 years. Any wonder I can't stay healthy now??

I used nasonex (guess what? contains BAK) for some time but I've switched to frequent saline rinses for the nose as well. Well, It's certainly not worse...possibly just little bit better... and nasonex after some time didn't help. So worth trying maybe?

[neil0502]

I used nasonex (guess what? contains BAK) for some time but I've switched to frequent saline rinses for the nose as well. Well, It's certainly not worse...possibly just little bit better... and nasonex after some time didn't help. So worth trying maybe?

They just started my brother AND his wife on Nasonex. When I heard, I verified the BAK component and sent them both a scare-tactic e-mail.

As for me, I have been a regular nasal irrigation dude for quite a while. Even in Europe, I traveled with my NeilMed irrigation bottle [1] and a big thing of salt. Even the mechanisms of sinus destruction with BAK seem exactly like the ocular surface destruction: cellular metaplasia, goblet cell death, cessation of ciliary function, etc., etc.

This BAK stuff ... I dunno'. It's the ONLY WMD I've found.

Where's Hans Blix when you need him. Toril? Anywhere near you??



[1] http://www.unimedprod.com/

[dianat]

Mailbox cleared.

[MJ]

Julie,
I wore hard contacts and then gas permeable contacts for 25+ years. Towards the end of that time I would pop them in only for photo ops and weddings ... sort of as a dress up accessory ... as they had become so difficult to wear. They would literally stick on my eyeballs at times. I was contact intolerant and dry eyed (two phrases I was not familiar with until after my LASIK surgery). Yet when I went in to see my eye dr. (whom I really liked and respected) this all translated somehow into my being a great candidate for LASIK!? I won't even go into what happened with that as this thread is not about that.

What this thread is about is venting. Venting is not only good, but healthy. If you don't let it out, it stays inside and eats at you. So, you actually benefit from venting. But what you're not stopping to think about is the benefit that venting grants to people reading this thread who might be thinking about wearing contacts or giving them up. If you vent honestly and wholeheartedly people pick up on that and yours might just be the thought that sticks in their head and helps to change their mind.

I hope things start to improve for you. Hang in there and vent as needed!
mj

[kakinda]

They just started my brother AND his wife on Nasonex. When I heard, I verified the BAK component and sent them both a scare-tactic e-mail.

As for me, I have been a regular nasal irrigation dude for quite a while. Even in Europe, I traveled with my NeilMed irrigation bottle [1] and a big thing of salt. Even the mechanisms of sinus destruction with BAK seem exactly like the ocular surface destruction: cellular metaplasia, goblet cell death, cessation of ciliary function, etc., etc.

This BAK stuff ... I dunno'. It's the ONLY WMD I've found.

Where's Hans Blix when you need him. Toril? Anywhere near you??



[1] http://www.unimedprod.com/

Wow NeilMed, and they named it after their best client or what?
I'm jealous... I want my Kakinda PF nose-drops delivery system right away (Pharmas if you're listening... ).

You mean weapons of metaplasic destruction (or is it weapon of meibum disruption)? But there are others thiomersal or thimerosal, EDTA, polyquad, etc...
and all their synonyms, here's a list of BAK synomyns alone if you want to check you pharmacy Neil: parasterol, alkyl benzyl dimethylammonium chloride, alkyl dimethyl benzylammonium chloride, benirol, cequartryl, drapolene, enuclene, germitol, gesminol, rodalon, ammonyx, zephiran chloride, autres noms commerciaux …. [various further trade names… but best known as Benzalkonium chloride.]

[Eyeproblems]

I dont mean to pry but I am curious what kind of meds you were on. The reason I am asking is because your story is similar to mine, somewhat. I dont know what happened to me, but my dry eye really hit its peak when I wore contacts, at that time my eyes became so red teachers would remark in high school, I was luckey I was well liked, because kids usually just used to joke about me with it, if they picked on me god knows I may not want to look at anyone this day.

This lead to a doctor prescribing me tobradex, which received refills from a dermatologist at the time and since it got the red out was overused, and then I was left with glaucoma in my left eye, and a year later after having a valve implanted still partially blind in that one eye, finally getting my dry eye somewhat treated since my pressure is stable.

Basically now I am feeling somewhat better, if I go out I have to go through a ton of things to build my confidence around my eyes, like wake up two hours early (takes about two hours for the lacrilube to clear up my eyes just from when I wake up) then I cant use a computer, and then usually my eyes are ok for about 8 hours, but my degree in finance and human resources requires me to make eye contact and be very outgoing. My doctor thinks I developed social anxiety disorder, I am afraid to constantly talk to people im not comfortable with now, based on my eyes, unless I keep checking the mirror to make sure there not red.

So my question ends up like this, how bad did the meds hurt your eyes? My doctor is aware of my dryness and eye problems and never mentioned anything. He offered me xanax, effexor, cipralex, and celexa, I dont know if this is like anything you took.

Hope all goes well though.

[Julie1]

MJ - Thanks for your encouragement. I have really enjoyed reading your posts over the last few weeks. You are so positive, which is exactly what this bulletin board needs!

Eyeproblems -

I don't mind sharing the meds that I was on. I started taking spironolactone (for acne) late December 2005 and was on the medication for about two months when I noticed that I was having a weird side effect not related to dry eyes. I went on Ortho Tricyclen Lo to control that side effect, and seven days later I woke up with bone-dry eyes.

I'm not sure which medication (or maybe both) played a role in my development of dry eyes because it takes spironolactone about two months to have any effect and the birth control starts working pretty quickly after you start the medication. Spironolactone is a diuretic, and one of the side effects is dry mouth. All birth control labels state that difficulty wearing contacts is a side effect. Difficulty wearing contact lenses is an understatement in my case!!

I'm sure that my dry eye was not completely caused by the medications because my symptoms should have resolved themselves after I went off the medications. Rather, the medication(s) probably triggered the dry eye, and there is some underlying condition or predisposition to dry eye that is keeping me at this state. Contact lens wear is probably a big factor. I think there are a lot of people that do not know exactly what caused their dry eye.

I'm sorry to hear about your eye problems and am glad that it seems to be more manageable at this point. I understand your concern about how other people perceive your eyes, and I also feel some degree of anxiety and do a lot of mirror-checking too. I have started to tell myself that I have to accept that my eyes will be kind of red (sometimes completely white and other times fire red with varying shades in between) and that I can only check my eyes a few times a day. It's hard thing to accept, especially when I was always told that my eyes were my best feature. That's certainly not true today. At least, I don't feel that it is. I've started to make it a point to try to think positively and to not let my eyes define who I am or who I can be.

I could also be feeling a little more positive because spring is here, and I'll at least get some relief from not having the heater at work run at full blast. It's nice not feeling like I am getting ready to go to a torture chamber every morning. Isn't it amazing what we will perceive as a simple pleasure after the onset of severe dry eye?

-Julie

[heather g]

Julie,
I relate completely to checking your eyes to see how bad/good they look. I tend to do frequent checks to see if I am looking a mess or not. It is ironic because I wnated the lasik mostly for the fact I could look and feel better. I thought my glasses made me self conscious! And the week of being quad plugged made me feel so much better about myself. Even with the overflow. I was wearing some make up again and was comfortable. No more bloodshot eyes or reddened lids.
It is amazing how the simple things such as the heat can make a huge difference. Who would have thought?
I read your first post and don't think you need to apologize for venting. This seems to be the best place for that as we all relate to your post at some time or another.
We all get exhausted and frustrated dealing with this. Oh and don't forget a little poorer fiancially!
Take care and let's hope for a good dry eye friendly climate this spring and summer!
Heather