Don't know what to do anymore...

[Chris1981]

Hi everyone. I have been dealing with dry eyes since late 2002 or early 2003, and after taking a break from dealing with all of this, I thought it was time to give some form of treatment another try. So here I am. This might be lengthy, but here's my story:

Anyway, I was just 21 at the time. Today, I'm 24. I have no idea how my problems started. A couple years ago when I was visiting every doctor in the area (only a slight exaggeration), I had a different diagnosis by everyone. A couple said allergies, a couple said blepharitis, a couple the meibomian glands were blocked, and one said they weren't blocked but they just weren't producing anything. Most of them I just quit seeing, and a couple said "there's nothing more I can do...good luck." Some say my TBUT is fine. Others say I have tons of dry spots. So I guess I don't even know what I'm trying to treat. I just know my eyes are dry.

My eyes are greatly improved over what they once were. Doxycycline did help, so I know that at leats at one point, I did have blocked glands. However, that only took me from intolerable and thinking life would not be worth living if I could not be cured, to tolerable...but still painful at times each day.

I found a new ophthalmologist a few months ago after taking a couple years off. At first, he just told me to use artificial tears because my eyes were dry. On the second appointment, he mentioned at first that he didn't think I had MGD, but upon closer inspection, I did have it a little. I didn't tell him my history and decided to act as if I hadn't been through any of this before - I just wanted to start over. He put me on minocycline, and now has me doing warm compresses and lid scrubs. Of course, nothing is helping.

My eyes feel best when I do absolutely nothing. But I have to do something to try and improve this situation. I really don't know what is left to try. I'm tired of fighting this.

Anyway, I guess I'll end my pity party there. My eyes aren't their best today, so I needed to vent.

Chris

[kitty]

Acceptance?

Hi Chris. Welcome to DEZ. You will find lots of support and helpful information here. So much of DES is trial and error, as far as diet, supplements, meds, lifestyle changes.

I certainly do hear your pain and frustration. My doc just told me a few weeks ago that there was nothing more that can be done. I think when we hear that, we are not sure how to feel. At first I was angry at the doctor and told myself I would find yet another one. Then my anger calmed and I vowed never to give up hope. Then, while keeping that vow, I let myself accept that this is the way I will live the rest of my life. I don't mean to sound defeatist, but I am tired of treatments that don't work, and having my hopes raised only to have them crash again. I hope my DES does not get worse, and I pray for a cure. But until the cure comes, maintaining the status quo is better than getting worse. I wish I could give you some answers. DES is such a difficult disorder. As you have figured out, there are as many opinions as there are doctors.

But you know, there is something you can do. There are several of us here who want to do more, who want to advocate for preservative free products and further research to come up with better treatments. Become educated, and educate others. Participate in clinical trials. As far as the doctors go, keep searching for the one that will help you, if that is what you need to do. At least find one that you are comfortable with, whether or not he/she can provide treatments that help.

[kakinda]

Haven't you tried Restasis or cyclosporine?
It may help reducing MGD problems by reducing inflammation on the lids too.
Hang on and try, try, try
Kakinda

[Rebecca Petris]

Dear Chris,

Welcome to Dry Eye Talk!! Glad you found us, though we always hate to see more young people with this affliction. Hope you can find some information or insights here along the way and if nothing else some support & hope.

A couple years ago when I was visiting every doctor in the area (only a slight exaggeration), I had a different diagnosis by everyone.

I'd like to just add a little bit of context and slightly different perspective to this understandably frustrating experience:

Chronic meibomian gland dysfunction is an area that doctors do not get a great deal of education about and it is not necessarily well understood or easy to diagnose anyway. I think that in 'dry eye' cases this entire category of problem, unless acute, too often goes undiagnosed altogether - that is, many patients with MGD may be put on treatment suitable for aqueous tear deficiency or may be told they're fine. So when you said '...A couple said allergies, a couple said blepharitis, a couple the meibomian glands were blocked, and one said they weren't blocked but they just weren't producing anything.', my first response was, WOW, roughly 5 out of 7 were actually talking MG - and the other 2 might also be right about some component of the problem as well - how unusual! What it tells me anyway is that if that many doctors tell you your problem is in your meibomians, well, believe it or not you're well ahead of a lot of other patients on the diagnostic front. - The fact that Doxy helped further validates this.

Some say my TBUT is fine. Others say I have tons of dry spots. So I guess I don't even know what I'm trying to treat. I just know my eyes are dry.

Don't be discouraged by this. What you have to keep in mind is that your
epithelial surfaces are going to vary a lot from day to day and hour to hour. If you saw one doctor early on a Monday morning, or generally 'on a good day', and another doctor at the end of the day after staring at a computer all day, they may well describe your surface dryness in quite different terms.

I would like to suggest that you use the OSDI to document your symptoms. Forgive me for re-wording you but I think that what you're saying above is not 'I just know my eyes are dry' but rather 'I just know I'm experiencing symptoms of ocular surface disease'. The OSDI can score your symptoms. It's a simple, powerful tool to document both for yourself and for your eyecare professional(s) where you stand. I think every dry eye patient should use this or something like it. Download it, fill it out now, maybe fill it out again immediately before your next appointment, fax it in or take it with you and ask for it to be part of your medical record.

...He put me on minocycline, and now has me doing warm compresses and lid scrubs. Of course, nothing is helping.

Please describe the compresses and scrubs you are doing. What are you using as a compress, what are you using for scrubs? There are compresses and compresses, and scrubs and scrubs. Maybe for some people no form of either will help at all, but for motivated patients with MGD, if one doesn't work it's worth at least trying another. Personally I think that on sensitive eyes scrubs should NOT involve baby shampoo or anything else with soap in it, and I think that for a compress to help in tough cases you need something a whole lot better than the traditional hot washcloth. You can also ask to be put on Doxy instead of Mino if you were getting more benefits from the Doxy.

My eyes feel best when I do absolutely nothing. But I have to do something to try and improve this situation.

I’m a little puzzled by this. Do you mean your current treatments make you feel worse?

[Chris1981]

Please describe the compresses and scrubs you are doing. What are you using as a compress, what are you using for scrubs? There are compresses and compresses, and scrubs and scrubs. Maybe for some people no form of either will help at all, but for motivated patients with MGD, if one doesn't work it's worth at least trying another. Personally I think that on sensitive eyes scrubs should NOT involve baby shampoo or anything else with soap in it, and I think that for a compress to help in tough cases you need something a whole lot better than the traditional hot washcloth. You can also ask to be put on Doxy instead of Mino if you were getting more benefits from the Doxy.

For the warm compresses, I took a brand new sock and put some rice in it. I throw that in the microwave for a minute and then keep the compress on for approximately 10 minutes. That's generally what I do, but if that's not convenient at a certain time, I sometimes just go with the washcloth approach. I don't like the washcloth approach because it's not very convenient to lean over a sink for several minutes.

Afterwards, I do the lid massages, though this particular ophthalmologist hasn't suggested that at this point. I just try and put a little pressure across my eye lids, but I'm not sure if that's doing anything or not. When I first started this years ago, I was able to see the thick, white secretions coming out of the glands, but I haven't been able to see that since the doxy helped me a few years ago.

For the lid scrubs, I'm using a qtip and some very diluted baby shampoo and gently rubbing it across the base of my eyelashes.

I try to do this 4x/day, but I often only end up doing it twice because it's rather difficult to fit in at work.

I was also given Bacitracin ointment for at night. I've only been using that a few days.

I’m a little puzzled by this. Do you mean your current treatments make you feel worse?

Yes. When I do anything at all, my eyes feel worse. I just went through the whole routine and my eyes are burning quite badly right now. My eyes feel great for a minute or two afterwards, and then significantly worse. If I go a couple days and do nothing, my eyes will feel much more tolerable. I've tried to stick with this whole routine several times in the past, and I always have a hard time because of this. I'm trying to stick with it awhile this time to see if I notice any difference.

And as for the Restasis, I tried that a few years ago when it first came out. Twice, actually. Both times I couldn't make it more than a few weeks because of the intense stinging afterwards.

[calli66]

Chris-welcome to Dry Eye Talk--this is a great group!

I can relate to your statement that your eyes feel better when you don't "do anything at all." I find I have to be extremely careful about what I put into my eyes and when. Even my regular "routine" drops--genteal gel and soothe drops--I use only at night, and I MUST close my eyes after instilling them, and keep them closed till the "response phase" passes (stinging, throbbing, irritation for up to 10 minutes). It feels much worse and gets worse if I keep my eyes open.

I agree with what others have said: don't use soaps and baby shampoo no matter how dilute. Hot wash cloths work well for me--in the AM after walking up (to clean the dried gel off and to stimulate circulation) and again right before bed but before putting in gel.

I think it's important to "listen" to what your eyes are telling you. If they feel better when you don't mess with them, then don't mess with them. Every disturbance exposes your cornea, your nerve endings and produces a response/reaction.

C66