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  • Introducing myself

    Hello to all forum members. Dry eye is the last condition I learned that I had. My mother had glaucoma and narrow-angle, and so I passed on this information to my optometrist, getting annual exams since about age 45. Here is how I began my dry-eye journey.

    In 2017, noticing consistent mucus in my left eye for about 6-9 months, I knew something was wrong. I felt moved to visit an optometrist at our church for a second opinion on my eyes, but put this off--a decision I have regretted. A few months later, I awakened to extreme left-eye pain, and with the third occurrence, I could not go back to sleep, suffering about 45 minutes before it subsided. Between these 3 or 4 throbbing, pressurized pain periods in the night, I experienced what I later learned was an erosion in the left eye. Calling my then-optometrist after the suffering of throbbing pain, he diagnosed the erosion and prescribed Muro 128.

    Thankfully I scheduled my yearly exam for a week later, where he saw negative dying, and concluded the erosion was the problem. However, after at least 2 more throbbing-pain episodes and an office visit, he wondered if I was experiencing narrow-angle closure.

    Visiting 2 different specialists, it was confirmed that my angles were very narrow. (Pressures during the daytime were only 14-18, but must have risen greatly in the early morning hours.) Because of the closure episodes, I had the second specialist perform a PI (who is part of an eye clinic with other ophthalmologists). Follow-up visit showed the narrow angle grades at 0 and 1 (out of preferred 2, on a scale of 4 being no angle danger). I knew my next option was refractive lens replacement, and logically cataract surgery, since the specialists both diagnosed moderate cataracts.
    My then-optometrist never diagnosed cataracts or anything other than the narrow angle (thanks to my disclosing so on my initial intake!), but now I know that the mucus symptom clearly indicated I had dry eye.
    Sometime after the PI, I discontinued regular use of the Muro ointment and drops, and began initial communication with that second optometrist.

    While awaiting cataract surgery (which is a whole learning curve itself), how much better prepared I would have been if I had known that I had dry eye that needed treating! During this waiting period, the discomfort seemed to shift from my left to my right eye; hind sight: the discomfort I felt most nights during this time was related to dry eye, NOT narrow angle (I was afraid of the scarring possibility with angle grades still so close, although the imminent angle closure was treated by the PI).

    Just days before my left-eye cataract surgery (which was done before the right eye, since all problems began in the left eye), my first official visit to new optometrist diagnosed map-dot-fingerprint distrophy (EBMD/ABMD). My thoughts were focused so much on the narrow angle, I scarcely considered much, except the alarm of yet another diagnosis. During left-eye cataract surgery post-op, examining ophthalmologist's look brought up the word "guttata" which I later learned--from my optometrist--means Fuch's 1+ (out of a level of 4).

    Erosions have been minimal in my left eye since the first one (maybe 3-4), while my right eye began eroding within a couple of weeks after the cataract surgery (performed 116 days ago), and escalated to RCES about one month out from surgery. At one point I had 3 erosions within 12 hours.
    Punctal plugs, all brands of PF drops, ointments, contact band-aids, nighttime goggles--nothing prevents RCES in this right eye except a pressure patch each night (suggestion of my optometrist). Even preventing an erosion does not prevent dry-eye pain in the night.

    I have visited 2 corneal specialists recently for my RCES, in desperation. Understanding that EBMD with dry eye may be the trigger for RCES (esp. dry eye untreated for about a year, subjected to PI and cataract surgeries).
    One specialist wants to do an SK, and the second specialist wants to do a PTK. Whether or not a do any further procedures, I realized that my dry-eye condition will not go away ("it's like managing high blood pressure" says one specialist), but I hope to manage/minimize the symptoms!
    Even though the pressure patch is keeping the RCES at bay, the dry eye pain means about 2 vials of Oasis per night, which means continually interrupting needed deep sleep!

    I have really only been treating my dry eye for the disease it is for about 2 months. It seems to be the pivotal condition to address in all this new disclosure I've experienced in the last 12 months since first realizing the additional mucus wasn't right.

    That's my story currently. I hope to learn more, and make informed decisions, and this forum seems to be an intelligent place to help me do so.
    EyesOpen

  • #2
    Im not familiar with the rest, just dry eye.

    Have you visited a dry eye doctor for a consulation to see if you are aqueous/ tear deficient or get a meibomian gland scan/picture to see if you meibomian gland disfunction?

    im sorry to hear all the tramau you have gone through. It must be very difficult. Dry eye alone is a very serious battle, im facing it myself.

    Comment


    • #3
      I haven't visited a dry-eye doc yet. It would seem that is the next important step, to find a good one. I did ask one specialist if my dry eye came from gland dysfunction or from tear evaporation, and she answered that, while my glands look "good," my tear quality and film evaporation are one in the same.
      Thanks for asking. Yes, dry eye is a burden to live with. I hope to gain back some quality of life...
      EyesOpen

      Comment


      • #4
        Welcome EyesOpen:

        My goodness, without researching it, I didn't understand most of what is going on with your eyes, your problems are very complex but like edmunder I do have a pretty good understanding of dry eye as do a lot of others on this forum so for advice on that you have come to the right place.

        I think the first thing you need to do is like edmunder suggested, find a good dry eye specialist. I don't know what country you are from or how big a center you have access to so what you find will vary but I would suggest that you start by googling IPL and Lipiflow to locate a clinic near you that is likely to have some of the latest equipment for treating dry eye. What you really need to start with is a comprehensive tear quality testing and meibography to assess the meibomium glands.

        The first thing I would do though, in the meantime, is to invest in a good pair of moisture chamber glasses particularly for outside. There are several popular brands like Wiley-X, 7eye and Ziena to name a few. Fit is important as they must seal to the face so it is best to try them on if possible. If you buy them online some companies will send you a variety of loaner frames to try on and your money will be refunded upon return.

        I do hope that you are not in a occupation where you are on computers all day or that you do a lot of reading or handiwork that involves concentrated eye use like cross stitch.

        Remember, this is a journey and you have just left the station but with help from this forum hopefully you can take a few short cuts and get to your destination just a bit sooner....cheers...F/G

        Comment


        • #5
          I agree with the above, find a good doctor...maybe set up a few appointments so you're not waiting months apart if you don't like your current doc.

          You mentioned you wake up a lot to add tears. I was in the same boat, thankfully I met some people that helped me find what works. So for me, I sleep with my eyes open, you may also and not know it. Matter of fact, my erosions is what lead the doctor to make that finding. He said, you're sleeping with your eyes open, and you probably have a vent above your head. Blew my mind...so the solution...

          I use bubble bandages every night, they're 8 bucks for both eyes per night, but it's the best protection I've found. You can also cut plastic wrap to fit over your eyes and use Vaseline to hold it on. If you can do a sleep mask (I can't, I rip them off) they're the most economical and effective. Apply a good ointment, that will keep you from waking up multiple times to reapply drops. Muro 128 has an ointment too, if you still need the muro, kills two birds with one stone. If you want a great ointment with no salt, retaine pm or soothe pm are the only pure ointments that don't bother me.

          Moisture chambers are great too....necessary imho.

          I also want to say I was diagnosed with EBMD incorrectly 3 times. I was sleeping with my eyes open, that caused the staining. It was in the exact same place on both eyes, that's why they thought dystrophy. The staining looked like an island, but it wasn't EBMD. Just take your time and get some opinions before you do PTK. Try the night protection see if that helps. Get your hormones checked, my dry eyes are thyroid related...took 8 doctors and 8 months to get any answer. Good luck, hope you feel better. The erosions are horrible, I feel for you.

          Comment


          • #6
            I forgot to mention that if you are not currently using serum eye drops you should be. Those are made from your own blood and contain many nutrients like stem cells to heal the eyes. I have not had dry spots since I started those 4 years ago and before that every time I had my eyes examined there were dry spots on the corneas. The first Dr I saw told me "your eyes are beyond dry and you need to find out why"

            Comment


            • #7
              Yes, Serum drop is good for RCErosion, I have read. I wish my +8 dotors knew this too.


              Comment


              • #8
                I appreciate everyone's replies!

                I think that my severity of dryness in part comes from not treating dry eye until after my procedures (necessary as they were).

                I am have been using the Onyx goggles for over 30 days, and have Tranquileyes, also. The latter don't prevent erosions, so I thought they weren't "working", but understanding the condition of Dry Eye, I have continued using a combination of the two for long-term healing. I make a pressure patch by combining the foam innards of the TE with the Onyx goggles, to alleviate erosions, and I will also begin trying to add moisture to the foam inserts and see if this makes a difference on the pain of the dry eye (no ointment lasts more than 3 hours, and I have learned to use drops the rest of the night rather than try applying more ointment).

                Yes, the serum drops are something I will check into. Also, there is a doc about 30 minutes away that my optometrist says does Lipiflow, which I will follow up on. When she originally told me about this, I didn't investigate, being so focused on the erosions. Honestly, without using the patch to avoid the RCE, I would still be desperately centered on that solution rather than Dry Eye.

                I so appreciate the supportive words and hearing other's stories. What I most desire is to manage this Dry Eye to a livable level, and reading that other's have done so is very inspiring.
                Last edited by EyesOpen; 05-Oct-2018, 20:11. Reason: clarifying my pressure patch method.
                EyesOpen

                Comment


                • #9
                  Is there anyone who does IPL, my doc does both but feels he gets better results from IPL. Lipiflow is better than nothing though and there are those who have had good results with it.

                  Comment


                  • #10
                    Originally posted by farmgirl View Post
                    I forgot to mention that if you are not currently using serum eye drops you should be. Those are made from your own blood and contain many nutrients like stem cells to heal the eyes. I have not had dry spots since I started those 4 years ago and before that every time I had my eyes examined there were dry spots on the corneas. The first Dr I saw told me "your eyes are beyond dry and you need to find out why"
                    Great suggestion, I couldn't live without serum.

                    Comment


                    • #11
                      Originally posted by EyesOpen View Post
                      I appreciate everyone's replies!

                      I think that my severity of dryness in part comes from not treating dry eye until after my procedures (necessary as they were).

                      I am have been using the Onyx goggles for over 30 days, and have Tranquileyes, also. These don't prevent erosions, so I thought they weren't "working", but understanding the condition of Dry Eye, I have continued using them for long-term healing. I make a pressure patch from either set of goggles, to alleviate erosions, and I will also begin trying to add moisture to the foam inserts and see if this makes a difference on the pain of the dry eye (no ointment lasts more than 3 hours, and I have learned to use drops the rest of the night rather than try applying more ointment).

                      Yes, the serum drops are something I will check into. Also, there is a doc about 30 minutes away that my optometrist says does Lipiflow, which I will follow up on. When she originally told me about this, I didn't investigate, being so focused on the erosions. Honestly, without using the patch to avoid the RCE, I would still be desperately centered on that solution rather than Dry Eye.

                      I so appreciate the supportive words and hearing other's stories. What I most desire is to manage this Dry Eye to a livable level, and reading that other's have done so is very inspiring.
                      I do the same thing, I put soothe pm ointment in, after 2-4 hours, I pull my bandages down and put in a drop of oasis tears plus. It's like a gel but super thin feeling in the eye. I then seal my eyes back up and get a couple more hours.

                      Now let me say this, I got worse erosions with the goggles because they can actually come off your face slightly, allow air in and also hold your lids open if you move too much. That's a BAD combo. So I'd say if you have the cash, buy the niteye bubble bandages and try them out for a week or two. They are exponentially better than the goggles for me, they're just super expensive. However, id pay anything to stop this so 8 bucks a night is a steal! Also, if you have a vent over your head, a fan or moving air, you gotta stop that. I had to tape my vents above my bed shut. I also run avhmidifier now every night. Try to keep my humidity about 55-60%.

                      Rebecca posted a list of ointments on her blog. The only two I can use are retaine pm and soothe pm. They have the best ratio of mineral oil and white petrolatum and no lanolin. I personally use the soothe pm.

                      A small change can can yield a great result. I was using theratears for a while, then recently, I felt it was burning my eye and causing agitation. So I switched to oasis tears plus...again, super expensive product. But it's clear you really get what you pay for with this product. It's the smoothest, most gentle, longest lasting drop I've ever used. I can fully blink and the gel won't leak out onto my lashes and crust over. When that happens, it clogs my glands. So I don't mind the price, because it works.

                      I have a hornonal issue caysing my eye problem...keep pressing for answers, I'm sure you'll find them...get that serum lol!

                      Comment


                      • #12
                        Originally posted by Dowork123 View Post

                        I do the same thing, I put soothe pm ointment in, after 2-4 hours, I pull my bandages down and put in a drop of oasis tears plus. It's like a gel but super thin feeling in the eye. I then seal my eyes back up and get a couple more hours.

                        Now let me say this, I got worse erosions with the goggles because they can actually come off your face slightly, allow air in and also hold your lids open if you move too much. That's a BAD combo. So I'd say if you have the cash, buy the niteye bubble bandages and try them out for a week or two.

                        Rebecca posted a list of ointments on her blog. The only two I can use are retaine pm and soothe pm. They have the best ratio of mineral oil and white petrolatum and no lanolin. I personally use the soothe pm.

                        A small change can can yield a great result...

                        I have a hornonal issue caysing my eye problem...keep pressing for answers, I'm sure you'll find them...get that serum lol!
                        I really appreciate Oasis. But I don't notice any one drop or ointment lasts any longer than another (although I agree that Oasis are the best lubricating), and I have so many brands of PF drops on hand that I am trying to use those and forego additional expense of ordering more Oasis.

                        A small change for me--to waylay erosions--has been the homemade pressure patching of the Onyx googles with the foam from TranquilEyes. This works for the near future range, until either my EBMD/cornea heals, and I can avoid PTK, or at least care for my DE before the PTK and afterwards.

                        I have a new naturopath appt. this week, and hope for a new set of eyes to assess absorption, hormones, or other factors that I haven't thought of. Thanks for your input, Dowork.
                        EyesOpen

                        Comment


                        • #13
                          Here is an update to my condition, since I introduced myself. I am finally systemically treating my dry-eye disease, and have found a dry-eye ophthalmologist who listens and did purposed tests. I would appreciate any feedback from members with experience in these matters.

                          This dry-eye specialist I saw on Sept. 4th did some detailed tests as to why I have dry eye (finally!)
                          1. I don't blink completely most of the time (thus stimulating the meibomian glands, to produce the oils for the cornea).
                          2. A number of my glands were truncated (not atrophied, thank God), so not producing at all.
                          3. Dr. Williams couldn't test evaporation rate, because I had used drops that day; he'll follow this up in 2 months.

                          I had a Lipiflow procedure done 3 weeks ago. Dr. Williams said that after 2 weeks, I should begin to notice glands producing again, but I've had some recent, uncomfortable days and nights. Per the doc, I am seeing if ointment helps at night [it has not usually made a difference].

                          Dr. Williams could see how the dystrophied part of my cornea (map-dot/EBMD) doesn't get tear film/oil over it, to produce enough whetting for that ridge-like area just at my blink line--and makes the erosions happen so easily when I open my eyelid.

                          My "homework" includes 1000 mg of Omega 3 daily, blinking exercises (aargh), compresses daily, and some drops--both Xiidra and OTC, in addition to thyroid support to correct leaning towards hyper thyroid (blood work shows I'm not at hyper yet).

                          I have read hyper thyroid affects eyelids closing completely.

                          Overall, I am hopeful to be headed in the direction of systemic treatment, and a real dry-eye doc who can give me answers. I got a voicemail from the eye surgeon's office, to schedule that invasive PTK. I won't decide on that until November.

                          I really hope to get off the Xiidra at some point, due to cost and being unsure whether it's doing any good.
                          EyesOpen

                          Comment


                          • #14
                            Here is my update. I had my 6-week, post-Lipiflow appt. yesterday.

                            Osmolarity of tears: L302 R295. The optimum is below 300, so right on high end of preferred numbers, but “no deficiency of aqueous.”

                            No staining of fluorescein, unlike pre-Lipiflow; this means that my "epithelial is not breaking down."

                            All MG are producing now, some more than others.

                            All that said, I still have EBMD, so managing my DE is crucial to avoid RCEs. The possibility of needing PTK is lesser, if I can continue to manage my eyes with blinking, compresses, some good night- and day-time eye protection, and drops. I would like to hold off on the PTK unless RCEs return and night goggles don't prevent.

                            Having only heard about my narrow angle (now gone), my two dystrophies, and my DED for almost a year now, I am reveling in the news that my eyes are doing so much better.
                            EyesOpen

                            Comment


                            • #15
                              Originally posted by EyesOpen View Post
                              Here is my update. I had my 6-week, post-Lipiflow appt. yesterday.

                              Osmolarity of tears: L302 R295. The optimum is below 300, so right on high end of preferred numbers, but “no deficiency of aqueous.”

                              No staining of fluorescein, unlike pre-Lipiflow; this means that my "epithelial is not breaking down."

                              All MG are producing now, some more than others.

                              All that said, I still have EBMD, so managing my DE is crucial to avoid RCEs. The possibility of needing PTK is lesser, if I can continue to manage my eyes with blinking, compresses, some good night- and day-time eye protection, and drops. I would like to hold off on the PTK unless RCEs return and night goggles don't prevent.

                              Having only heard about my narrow angle (now gone), my two dystrophies, and my DED for almost a year now, I am reveling in the news that my eyes are doing so much better.
                              Finally some good news in this forum. I am happy for you.

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