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

    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.
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

  • #2
    Thanks, that was very helpful. I'm doing about a third of things wrong. Always great to get the road to recovery headed in a better direction.

    Jeff H.

    Comment


    • #3
      thanks Rebecca-you just reminded me that i need to do some cold compresses as my blepharitis is driving me nuts... i need to bring this inflammation down..

      on another note-i saw a posting on here for TheraLife Eye.. do you know of anyone who has used this and it has helped?? i dont want to waste my $ if is just a hoax.. the website sounds too good to be true--so like they say-it probably is.. if you could let me know or just message me as well i would greatly appreciate it..
      thanks
      Jenny
      Jenny

      Comment


      • #4
        I sent you a PM, Jenny.

        Always hard to know but if a product has been available for a long time and is helping a significant percentage of people, there's usually at least a little buzz about it on the board.
        Rebecca Petris
        The Dry Eye Foundation
        dryeyefoundation.org
        800-484-0244

        Comment


        • #5
          I would like to add some additional tips that many of us have found useful. Hopefully, this will inform and help some dry eye sufferers and add more to the list of possible options for people with dry eye.


          Dry eye can be caused by acute and/or chronic inflammation.

          • This inflammatory reaction can affect all parts of the eyes, glands and eyelids. It can even affect the nerves surrounding the eyes.

          • Often, the medical solution to the inflammation is various anti-inflammatory medications. Topical allergy drops, Restasis, topical steroids and topical anti-inflammatory medications are examples.



          Allergens and irritants can trigger inflammation or exacerbate inflammation.

          • Allergens and irritants are present in our environment that can be harmless to most people. However, people with dry eye can experience a painful inflammatory or allergic reaction to the very same substances that other people find harmless.

          • If you can (through a thorough investigation of your own environment) find allergens and irritants in your environment that trigger your ocular inflammation, removing the substance or product could be one of the easiest things you could do to improve your eye comfort.



          Finding the offending substances or products.

          • First, go through your entire day and think of any substance or product that comes in contact with or near your face.

          • All hair care products (shampoo, conditioner, medications, hairspray, styling gel or mousse, etc.)

          • All facial products (lotion, medications, cosmetics, soap, makeup remover, etc.)

          • Any products that touch your hands (soap, lotion, antibacterial wipes, lotions, dish cleaning products, etc)

          • Any fragrances that are anywhere on your body.

          • Any soaps or detergent on your pillowcase or fragrances near your bedroom (air freshener, oils, flowers, etc.)

          • Any metal products that may come in contact with your face and eyes or near your face and eyes. (metal eye glasses, tweezers, earrings, watches, etc.)

          • Any substances (even prescribed medications) that come in contact with your eyes. (wetting drops, prescription drops, oils, etc.)



          Start experimenting.

          • Remove products (one at a time works, but isn’t essential) and give yourself several days to check your symptoms. (Better? Same?)

          • Or, remove all the products and add one back at a time (works best) and check your symptoms. (Better?, Same?)



          Read the DEZ threads that pertain to allergens and irritants.

          • Many members here have posted the results of their own personal investigation into their own inflammatory triggers and listed the products.

          • This may give you a starting point when you start to assess your own environment.



          Don't assume products labeled "natural," "botanical," or hypoallergenic are not triggers for you.

          Do your own research and see for yourself if the products affect you.






          On a personal note: Five years ago I was 6 years post-LASIK and suffering serious dry eye and inflammation. I was using drops all day long and overnight. I used prescription allergy drops twice a day and prescription steroid drops when it was really bad.

          Discovering my own personal inflammatory triggers, I have removed the offending products and substituted them with products that don't trigger inflammation. My symptoms have gradually but dramatically improved.


          Scout
          Last edited by Scout; 06-Jan-2011, 11:48. Reason: fixed typos

          Comment


          • #6
            hi,

            thanks rebecca! sometimes it is very helpfull to get some encouragement,and your post definately is.
            i'm 5 years post lasek and in my opinion i'm moving into the wrong direction. directly after my refractive surgery i was perfectly happy with the results. sight was 20/20 (still is) and no dry eyes at all. i was at least 2 years without any problems and then it gradually started.
            initially i didn't even knew what was happening to me. my eyes started to bother me more and more and i generally thought it would be just plain fatigue. but it wasn't at all. it was the start of a hughe longterm problem that would end up into a living hell.
            i've been to several opthalmologists and i feel i have never gotten a proper diagnosis. my own guess is mgd. so my treatment is aimed to get the glands working again. not much succes though.
            the thing is i have bad days,but i also have days that my eyes don't bother me at all. can't really understand why,but it does happen from time to time.
            on those good days it is so very easy to slack off the treatment regime,because it is no fun at all doing it. and when you're not in pain why do it? ok,wrong thought and maybe a bit lazy. the catch is that whenever my eyes feel normal i forget about the pain i suffered very quickly. it is so very normal to have no pain in the eyes. it is a basic right. unfortunately it doesn't work this way.
            also very encouraging is the remark of scout. after six years of dry eye due to lasik there still was a considerable improvement. i thought chanches for improvement after a couple of years were little to none. is there still nerve regeneration after so many years? are there maybe other factors that contribute to improvement after 5+ years?

            regards,patrick...

            Comment


            • #7
              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

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              • #8
                warm compresses really bother me. I would try cool compresses...the warm might be giving you too much inflammation.

                Good luck,
                Margaret

                Comment


                • #9
                  Thank you, this has been a great help.

                  Comment


                  • #10
                    thanks

                    Thank you for this post. I just joined and it is very reassuring to read....you clearly understand what it's like to be struggling & searching for answers.

                    Comment


                    • #11
                      Do something very different, something you always wanted to do. FOR ME, IT WAS "BUZZING" MY HAIR (THINK SINEAD O 'ONNNOR) AND I LOOOVE IT! I do not think about my eyes/pain 24/7. Sometimes change is huge, at least for me.

                      Neve

                      Comment


                      • #12
                        Great info rebecca
                        "Only the body can heal itself, and all healing must come from within your body."

                        Comment


                        • #13
                          Rebecca's wonderful post. Everyone should read it!

                          I just joined a couple days ago. Tonight I read a post that Rebecca had written previously, but reposted it from her bulletin. Everything she wrote shows that she REALLY GETS how dry eyes are life-changing, and not in a good way. It is full of helpful suggestions, and reassuring with her comments that we CAN, sooner or later, find the right help for ourselves and our specific eye situation.
                          Thank you again, Rebecca.
                          Shirley, new member, dry eyes big time plus eyes that open when I sleep

                          Comment


                          • #14
                            "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)." <--- such great advice- something I had not even considered.

                            Thank you Rebecca for this great thread. And of course for starting the dry eye forum. I think you should be the saint of dry eyes!

                            Comment


                            • #15
                              Originally posted by Linda M View Post
                              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
                              Yes, I have many of your same problems--wanting to close my eyes due to sunlight, florescent lamps, etc. What is going on? Antigua

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