Coping 101: How do I start feeling better and coping better?

[Antigua]

Linda M
Are you feeling better? Do you have a diagnosis? Antigua

[Klee]

Getting worse and depressed

My eyes are getting worse. I have stopped driving and can't focus well. MY eyes keep wanting to close. In stores the light offends my eyes so bad I shop more with my eyes closed. That is on a rare day when I am not so tired of it all. I am on Restasis, dwelle, warm compresses and nothing seems to be improving my condition. Now I have a slight twitching of the eye lids in the morning and it is hard some days to keep eyes open. This started 4 months ago and my daughter is getting married in a month and I am not sure I will be able to see her walk down the aisle. Please any suggestions will help. Dr, put temporary plugs in- did not work. I was on steroids for only a couple weeks. I have the onion goggles, but glasses seem to irritate me. I can't leave them on, its like I can't have any glasses around my eyes. Thank you for reading this. Linda

Dark glasses. Even in stores. At home etc. Helps glare

[wissen1]

How to know if I'm using too much lubricating drops. Burning doenst seem to be a good indicator for me because right now I almost got that 24/7. Doctor told me to use them every 30 minutes no matter if I feel I need them.
According to this guide this doesnt seem right.

[gep1225@gmail.com]

This is from my bulletin a few months ago... thought I'd make it handier to access here.

----

Dry Eye: Coping 101

Are you new to dry eye misery? Or have you hit a new stage that you’re struggling to come to grips with? Perhaps you’re on your second or third doctor and still aren’t feeling better. Perhaps you’re reading the wrong kind of stories on DryEyeTalk and are getting scared and discouraged. Perhaps you’ve tried the classic drops, steroids, Restasis, plugs etc and are still getting worse.

Maybe you have a drawer full of artificial tear rejects. Maybe your doctor so far doesn’t even seem to think there’s much of anything wrong, despite how you feel. Maybe the resulting depression and anxiety are escalating into concerns in their own right.

Nothing can take the place of finding a really good doctor to help you get a detailed, accurate diagnosis and a thoughtful treatment plan designed for your specific condition(s) and needs. But for those who haven’t found him or her yet, hopefully some of these tips can help put you on a better path.

PART 1:How do I start feeling better and coping better right now?
(Even if I am not sure I have a good doctor, an accurate diagnosis, or an effective treatment plan… yet!)

STEP ONE, a little orientation:

You are NOT alone.

You are NOT going to feel like this forever.

You ARE going to feel considerably better, though it may take awhile (for a variety of reasons) so you need to gear up to cope with what you’ve got in the short term.

You have NOT tried everything, even if you think you have.

You MIGHT NOT yet have a complete or thoroughly accurate diagnosis, even if you have been to highly rated doctors.

You MIGHT already be on the right path to healing and need only time and patience to get there or minor tweaks to your regimen. How you feel right now is not always an accurate indication of what direction your eyes are headed.

You MUST NOT take how you are feeling now and perhaps your lack of progress to date and extrapolate it out till the age of 90. That’s needless and harmful. Trust me. It doesn’t work like that. Shorten your speculation horizon to, say, six months to a year.

STEP TWO, let’s talk about some drugless tips to address severe symptoms.

For the moment we’re going to shelve the questions of diagnosis and treatment. If like so many other dry eye patients you’re dealing with burning, pain and other symptoms that are significantly affecting your life, you need a small arsenal of things you can do to reliably reduce or at least take the edge off your symptoms – to keep them down to a manageable level. If you don’t already have such an arsenal, focus on getting it.

The objective here is to identify products and techniques which:

• Can make you feel better
• Won’t harm you in any way if used properly
• Are independent of and compatible with any treatments you may need

Below are a few of the things of this sort which in my observation have seemed the most frequently helpful to the most people over the years. Obviously they won’t work equally for everyone. Join the discussions here to find additional tips.

And remember... it's helpful to have some mental separation between dry eye treatment (aimed at improving the tear film) and symptom management (aimed at just plain feeling better).

1. Cold compresses

Cold, rather than heat, often brings relief of burning and general soreness. It also helps reduce inflammation in the lids and eyelid redness (sometimes eye redness as well). I don’t have any reason to believe it can interfere with warm compresses for MGD if you need those, but common sense dictates that if you’re doing both types, you leave some time in between.

What to use?

Homemade: Ziplock baggie with water and a little crushed ice.

At the drugstore: Most drugstores have chillable gel eye masks of some kind.

At the Dry Eye Shop:

Simple Soother ($7.50)

Simple Soother Patches ($6.25)

These soothers that I stock are very simple and probably overpriced (sorry but my supplier is overpriced) but a nice thing about them is they’re very small so you can apply cold only where you want it, not to your forehead and cheeks. That also means they don’t stay cold as long, so it’s helpful to have a couple in the fridge at a time.

Another approach to cold compresses is with the Thermoeyes or Thermoeyes Beads with the Tranquileyes goggles, for those who have them, or simply soaking the moisture pads in ice water.

2. Saline rinses

This is a suggestion mostly for people with “toxic tears” feeling or frequent burning sensation, and also those who often find that commercial eyedrops always irritate the eyes or make them feel heavy and uncomfortable. If you are intuitively feeling that adding more chemicals to your eyes is making things worse, it’s important to pay attention to that.

Unpreserved saline is not a substitute for artificial tears so PLEASE DON'T OVERDO IT. It's just handy and helpful at some of those miserably “burny” moments!

What to use?

At the drugstore: Unisol 4.
It's usually on the bottom shelf of the contact lens section. Not all drugstores have it but you can ask the pharmacist to order it in. It comes in a box of 3 bottles with puncture tops and you have to throw away the bottle within 30 days. Storing in the fridge is a good idea – it’s even more soothing chilled. Do not use the unpreserved saline vials that I have in the dry eye shop for this purpose (unless you just want them on hand for emergencies… for example I always keep some in my car) as they are not pH balanced for the eye. Do not confuse this with eyewash (don't buy that stuff... it always has toxic preservatives).

3. Daytime eyewear

The dreaded goggles. Moisture chambers. Whatever you want to call them. I know everyone groans when they read about this and they assume that it’s for someone else that’s worse off than they are. But if your activities and quality of life are taking a serious hit from dry eye, you really should consider it. At least in the privacy of your own home.

When your tear film is compromised, anything that stimulates your eye surface, including moving air, may affect your symptoms. If that air is dry (like everyone’s will be when you turn the heat on this fall) and/or of questionable quality (like most offices) it will play an even bigger role. Wind, of course, is the worst. Isolating your eyes from these irritants even if only for an hour or two a day can often be beneficial. It may just make all the difference between reading in the evenings or not, taking a walk or not, watching that movie or not. At the office, it may make the difference between making it through the day productively and not.

What to use?

*Dustbuster ($12 – clear or grey lenses) small or medium

Onion Goggles ($20 – clear lenses only)

Guard Dogs (for over glasses, $35, clear or grey lenses)

*Wiley-X Airborne ($84-140, light-adjusting or sunglass lenses)

*or AirRage, ditto

*7Eye Briza, Churada, Cape, or Bora etc - $99-199

*Micro-Environment Glasses

* The ones with an asterisk can have prescription lenses put in them.

STEP THREE, let’s review your routine for common errors.

It’s quite possible small alterations to your routine could give you some relief.

TOO MANY DROPS?
If you are one of those compulsive artificial tear users dumping stuff in your eyes every 20 minutes, you are probably making your situation worse. You’re probably using drops for “sensation management”, not for necessary lubrication. Please consider non-drop means of feeling better (see Step 2 above and if nothing there helps, get on DryEyeTalk and ask others for tips) so that you use drops more sparsely. If you have a doctor who says "Use them whenever you feel like it", and really means it, I have to respectfully disagree. Research it.

ONLY DROPS?
Many people I talk to start off by saying, “I’ve tried everything!” when really, everything they have tried came in a bottle. There is much more to dry eye than dropping stuff in them. Go back to Step 2 (again). And don’t ignore your doctor when s/he recommends something that is not a drop, such as compresses, lid cleansing or goggles.

POOR COMPLIANCE?
Do you use things on bad days and quit on good days? Do you peter out on new treatment regimens because you get discouraged when you don’t see progress soon? Patience is key to success in dry eye treatment & management. Most treatments take awhile.

BABY SHAMPOO?
Scrubbing lids with baby shampoo is classic doctor advice for blepharitis but for a lot of us it really stinks! That shampoo gets into your tear film and destabilizes it... and your eye surface feels like it's on fire. (At least, that's what happens to me.) If you’re using baby shampoo and it works fine, terrific. If you’re using baby shampoo and it makes you feel worse, quit. Get a lidscrub product like Ocusoft foam (available at drugstores and also in my shop) which is very gentle.

TOO MUCH HEAT?
Are you doing HOT, not warm, compresses? Are you doing them three times a day? Are you heating a washcloth to almost burning so that it will stay warm more than 30 seconds? Check in with your doctor about these details. You may be causing unnecessary inflammation in your eyelids. Check out alternative heat pack approaches, such as a homemade rice baggy (or mine) or Thermoeyes Beads.

MESSING WITH YOUR LIDS too much?
Anything can be overdone. Tender swollen lids want a cold pack and some rest – don’t overdo the lid scrubs and heat.

Thank you for all your suggestions. I was wondering if there is a quick way to get some relief. I am at my wits end. I am so afraid to try much. Just need relief!!

[Guest]

Has anyone tried the lipiflow treatment and if so how were your results?