First exam for DES - advice on how to prepare?

[Lobster]

I've had relatively mild dry eyes for years. No one ever examined them, they just put me on simple eye drops (hypromellose). My eyes are now worse, and in particular it's getting on my nerves that they will randomly sting and swell shut when I'm in the shower, purely from the steam. Since I have severe ME/CFS and get very dizzy in the shower, this just isn't safe. Anyway, I spoke to my optometrist about ten days ago, and he suggested using the eye drops every hour. He said it should take a week or two to kick in, and if it didn't, then come and see him for a proper examination. It's been ten days, and it doesn't feel like my eyes are any better. Should I see him as soon as I can arrange an appointment, or should I wait a bit longer? And secondly, should I use the eye drops just before the appointment, or let him see my eyes as they are in their natural state?

Background: the ME, of course. Suspected Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome, and/or mast cell disorder. (Referral for those is taking forever.) I'm on antihistamines for, well, they haven't really said what for, but if there's a mast cell disorder in there, it would explain why they help so much. Anyway, the antihistamines don't seem to coincide with my eyes getting worse. I'm 35. My mother has map dot fingerprint epithelial dystrophy, but my optometrist said it's not inheritable and that I'd know by now if I had it. The ME causes neurological and muscular problems with my eyes, such as intolerance of fluorescent light and difficulty reading.

[spmcc]

Hi Lobster,

I'm sorry that you're here. But you're doing the right thing by preparing for your doctor's appointment.

You can start by reading some articles found on Dry Eye Zone's homepage: http://www.dryeyezone.com/. If you scroll down, there are good introductory articles (e.g., how to get a better diagnosis, etc.) that Rebecca wrote and posted.

There is also a list of general "beginner" questions you can ask your doctor:

1) How is my tear quantity?
2) Do you see any dry spots?
3) Can you check for staining?
4) Can you press on my meibomian (oil) glands? Are they releasing oil? Is the oil clear and flowing freely? If not, what does it look like?
5) Do you see any signs of allergies?
6) Do I have any lid closure or blinking problems?

Good luck with your appointment. Please come back and share with us what you learned.

[Guest]

he suggested using the eye drops every hour. He said it should take a week or two to kick in, and if it didn't, then come and see him for a proper examination. It's been ten days, and it doesn't feel like my eyes are any better. Should I see him as soon as I can arrange an appointment, or should I wait a bit longer? And secondly, should I use the eye drops just before the appointment, or let him see my eyes as they are in their natural state?

If you haven't noticed anything with artificial tears yet, I'd make an appointment now. He asked you to try them for 1-2 weeks, and you've tried it for a week and a half with no improvement - might as well go in as soon as he can see you I think.

re: using drops just before the appointment

Now I know everyone won't necessarily have the same experience, but here goes... I've been one of those people with symptoms that are WAY out of proportion to what the dr's can see upon examination. I used to use drops every 15 minutes out of necessity (sounds crazy, I know... but it was literally the only way I could live my life and DO things that required my eyes to stay open... )... so of course, I'd be in the waiting room, using drops every 15 minutes, and when the dr. would see me, my tear break up time would seem not too bad (not normal, but not horrible either), and eyes would look moist. (well of COURSE they looked moist and had a not-too-bad TBUT time since a lovely drop of thick and gooey Celluvisc drops had been put in mere minutes earlier, right?)

So I did an experiment - I went to a couple of appointments where I used no drops in the waiting room whatsoever - I could feel my eyes drying out, getting scratchy, so I'd just blink like mad, and resist the urge to "cheat" by yawning for tears. For the appointments where I did this, it would be anywhere from 30-60 minutes of no drops before the dr. got to take a look, and every time, he would see dry spots and a super bad TBUT. This actually thrilled me because although the doctor had been nothing but wonderful and very good about letting me try various treatments, I was glad that he could finally SEE proof with his own eyes, rather than have to simply trust me. Let's face it - normal people don't have dry spots after 30-60 minutes without eye drops, right?

My theory is that part of the reason my eyes didn't look too bad at all other appointments was because I'd used drops so recently that they made my eyes look better than they really were.

So, just in case your eyes will behave like mine and look better than they really are due to having just used drops right before the appointment, I'd try to hold off on using drops for an hour or so before you think you'll get in to see him. That way, he can see your eyes as they actually are, and not as the drops make them appear to be.

Anyhow, I no longer use drops every 15 minutes - eyes are doing much better now with the cautery that FINALLY seems to have stayed shut, so as long as I wear my moisture chambers, I often go 1-2 hours between drops... sometimes longer.)

[Lobster]

Thanks, that's brilliant advice! He's my usual optometrist, so he knows me already.

I'll probably just skip the eye drops that day, then, although I might try using them even more often for the next few days and see what that does.

Another person with DES after LASIK, I see. Occasionally I see people suggesting LASIK or its friends, and I always hop in and explain why they really, really do not want to risk DES.

I'll have a look at that article later, but I'll take the list, so thank you for that. My reading hasn't been fantastic today. Speaking of which, I went on a semi-blind date the other night, and it was really embarrassing - I was very tired and my eyes weren't good, and I was not faring at all well with the menu! He must have thought me a right doofus.

[spmcc]

Good, I'm glad SAAG said what I wanted to about using drops before appointments. I just worry if someone's eyes are so bad that they MUST use drops constantly, that I've told them something harmful. But, I agree with SAAG. Your doctor will examine your eyes and test them (e.g., Schirmer's, TBUT, etc.), but the measurements will be very off/wrong if the eyes are full of artificial drops. *If you can*, avoid using drops before your appointment. Give it as long as you can before you're seen.

[Lobster]

It looks like I'll be giving it another week - I suspect that turning up with a streaming cold won't give him a good idea idea.

[spmcc]

Colds always make my eyes feel better... the rest of me feels terrible! Let us know how the doctor's appointment goes when you do get to see him/her!

[bakunin]

Yeah, when I have my throat inflammed (a cold or flu) my eyes always feel better, almost normal. I don't know why, neither the doctors.

Once I went to an appointment in that condition. My eyes were fine. My TBUT was 10s (what is low but in the range of normality). The doctor (the best one I went) said to come back when my the eyes were bad. But I had to move and never did.

[Lobster]

The cold is pretty much gone now, which isi good as the appointment's tomorrow.

[Lobster]

Yeesh, my eyes are sore today. I know they were sore before I started medications, but I'm wondering if the meds I'm on are making them worse. Although surely switching from cimetidine to ranitidine wouldn't hit me within one day? At least this hopefully means the problem will show up nicely for tomorrow.