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  • Dry Eye for 4 Years

    Hi all,

    I'm new to posting, but have followed this forum off and on for a few years now. Here is my (long) dry eye story:

    My first dry eye symptoms appeared in September 2012, at the age of 25. At the time, I was working at home in Colorado. The first thing I felt was a sharp pain in my eye that would last for a few seconds, and then go away. This happened about 20 times a day, for about a week. Then one day the pain got replaced with a general feeling of dryness. I discovered two things quickly:

    1. Putting on contact lenses made me feel better
    2. I could feel better if I got away from my computer for a few hours

    Fast forward a couple months, and I'm working in an office in Phoenix, AZ. I'm a data analyst, so I'm spending probably 8-9 hours in front of a computer at the office, and then 3-4 hours in front of a computer/TV at home. Over the next few months (early 2013), my symptoms are getting worse and putting on contact lenses no longer helps me. I still can feel better if I get away from the computer, but it now takes about a full day away from the computer before I feel better.

    I see my first ophthalmologist in June 2013. He doesn't really do any tests - mainly just looks at my eyes. He says I have inflammation and prescribes Restasis for me. While on the Restasis, I also order a heat mask from Amazon and find it helps me. After taking Restasis for 6 months, I don't see any real improvement. It's clear at this point that the doctor can't really do anything else for me, so I start seeing my second opthalmologist in January 2014.

    The new doctor diagnoses me with MGD, and we do Lipiflow on my right eye in February 2014. It doesn't really help me, so we try other things such as Doxycycline and HydroEye supplements. The HydroEye actually helps me for a while, but I'm gradually getting worse and in May 2014 my eyes start to feel gritty.

    This is where I really start going downhill. I continue to work at my office job, but it's getting increasingly harder to mentally get through each work day. Eventually, I decide that enough is enough and I quit my job in October 2014. Before I quit, and through the end of that year, I seek second opinions on my dry eye.

    In December 2014, I start seeing my third ophthalmologist at the Mayo Clinic in Arizona. She diagnoses me with a tear deficiency as well as MGD. In June 2015, we try serum tears and IPL simultaneously. The grittiness improves, but my meibomian glands still aren't functioning well. After three IPL sessions, she determines we shouldn't do any more IPL sessions, as they likely wouldn't be effective. In October 2015, she refers me to another doctor at the Mayo Clinic who can potentially fit me into scleral lenses. I try the lenses, but they aren't very comfortable and am told that they would take a few months to customize the fit for. Since my lease is ending soon at this point and I plan to move out of Arizona, we settle on wearing a new brand of daily contact lenses from Acuvue called Oasys HydraLuxe. At my last appointment with her, she takes an image of my cornea to look for nerve damage. She can't really find any problems with the nerves, but does refer me to a corneal specialist in Boston.

    In November 2015, I move back in to my parent's house in the Seattle, WA area. I'm wearing the new contact lenses every day, but can't put in serum tears as much (since you're not supposed to put in serum tears when wearing contacts). After a month of doing this, I'm starting to feel bad again. I decide to go see the Boston doctor.

    I fly out to see the Boston doctor in December 2015. He confirms I have tear deficiency and MGD, and with the help of a high resolution imaging machine, adds corneal neuropathy to my list of problems. He puts me back on serum tears 8 times daily, along with nortriptyline daily and Lotemax two times a week. A month later, the grittiness is pretty much gone, but I still have some irritation. One year and a meibomian gland probing procedure later, I'm feeling the best I've felt in a long time. My nerves are virtually all repaired, there's no grittiness, and the inflammation is under control.

    I now see my Boston doctor every three months. I'm immensely grateful for what he's done, and after four years of dry eye, I feel like I'm close to establishing a routine that I can maintain until better things come along (and hopefully they come sooner rather than later).


    Throughout these four hard years, I've learned the following things about dry eye. This is what I would have told myself when my symptoms first appeared:
    1. Go to an ophthalmologist to be treated for dry eye, as they are more likely to know more about the disease than an optometrist. That being said...
    2. Not all ophthalmologists are equal. Dry eye is still fairly new to ophthalmology, so many are ignorant about it. Due to the progressive nature of the disease, it is absolutely imperative that you find someone who is knowledge about it or your eyes WILL get worse. To screen the right doctors, you should...
    3. Evaluate ophthalmologists when they are evaluating you. They should do a battery of tests on you. If they don't take at least one image of your eye (e.g., Corneal Imaging, LipiView), then they don't have any business treating you. To help the doctor who is evaluating you, you should...
    4. Make note of EVERYTHING that either helps or hurts your eyes. This will not only help the doctor diagnose and treat you, but it will also help you figure out what works best for YOU.
    5. Lastly, Be Patient! Dry eye is a chronic disease that can't be fixed overnight. It took me four years to find ONE combination of things that worked, and even then I know I'm still not done.

    I hope this helps anyone who is a new dry eye patient.
    What you need to know about computer-induced dry eye
    Dry Eye Survey
    IPL Doctors
    Probing Doctors

  • #2
    Thanks for this post Pythonidler.

    What a great testament to the fact that with time and persistence you will, more than likely, improve. We repeatedly say this as we encourage others and it is so true. We learn from each other and everyone has a different journey. You may never be perfect but, with time, you will find that combination of things that work for you.

    It also serves to remind us that our eyes are very delicate and like a recovering addict we cannot go back to where we were when this all started because often that is what got us where we are in the first place. Kudos for you for quitting your job. I am assuming that you have changed vocations or at the very least changed the way you work, ie. shortened hours, more breaks, less computer/TV time at home in the evenings etc.

    It is such a process with so many twists and turns and as you said in point #5 Be Patient! ...cheers...F/G

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    • #3
      Would you mind sharing the name of the doctor who ultimately helped you? I've been to so many in the past several years but none have really had a clue. I live in the Boston area, which is why I ask. Thanks.

      Comment


      • #4
        Originally posted by redstudent898 View Post
        Would you mind sharing the name of the doctor who ultimately helped you? I've been to so many in the past several years but none have really had a clue. I live in the Boston area, which is why I ask. Thanks.
        Check your PM
        What you need to know about computer-induced dry eye
        Dry Eye Survey
        IPL Doctors
        Probing Doctors

        Comment


        • #5
          Hello pythonidler,

          I am newly registered here too. Thanks for taking the time to share a detailed account of your dry eye story, together with the list of insights and suggestions. This is useful for comparing with my own notes while trying to figure out a solution mysef - I am 2.5 months into this mess. I am also going to use your notes when interviewing for a second ophthamologist (my current one does not use much equipment for testing). Thanks for emphasizing the importance of finding the right one - I am going to do it even if it sounds tedious.

          Do you have any more details about that high resolution imaging, so I could check to see if any doctors in my area would have something similar (I live in Canada, near Toronto)?

          I am sorry to hear that you struggled with the condition for 4 years before finding this wonderful dr to put things under control. So do/did you work with Python? I am in software too and so understand the pain of having DES that severely affects the ability to work in this field. I hope you can get back to what you love to do.

          Take care.



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          • #6
            Originally posted by ltree View Post
            Do you have any more details about that high resolution imaging, so I could check to see if any doctors in my area would have something similar (I live in Canada, near Toronto)?
            I don't remember the exact name of the machine, but I believe it's called a corneal confocal microscope, such as the Confoscan 4. Here's a video showing how the procedure is done:
            https://www.youtube.com/watch?v=snlz80ZjGx8

            It's kind of a long video, and it's meant more for teaching doctors and techs how to perform the procedure, but it'll give you a good idea of what is done. Whoever is doing the procedure should take several images of your nerves, like these:




            My doctor also took two sets of images of my meibomian glands. One gives you the "big picture" of how they're looking overall (i.e., are they nice and thick, or are they atrophied?), like below:



            The other is a more detailed view of the lid surface, and will show if there is any scar tissue (keratinization) over the glands. I don't remember for sure, since it was over a year ago, but I think they used the confocal miscroscope again for the detailed lid image.
            What you need to know about computer-induced dry eye
            Dry Eye Survey
            IPL Doctors
            Probing Doctors

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            • #7
              Originally posted by ltree View Post
              I am 2.5 months into this mess. I am also going to use your notes when interviewing for a second ophthamologist (my current one does not use much equipment for testing). Thanks for emphasizing the importance of finding the right one - I am going to do it even if it sounds tedious.
              One thing I'd like to emphasize is that you should seek out more than one second opinion. After I quit my job, I saw about 4 different doctors and finally settled on the one at the Mayo Clinic. And I didn't even have an appointment with her originally - I was referred to her by the first "second opinion" that I saw at Mayo.

              And speaking of referrals, they can be very powerful. The last two ophthalmologists I've seen, I was referred to by other ophthalmologists. But not all ophthalmologists will be willing to refer you to someone else.
              What you need to know about computer-induced dry eye
              Dry Eye Survey
              IPL Doctors
              Probing Doctors

              Comment


              • #8
                Originally posted by ltree View Post
                Hello pythonidler,
                So do/did you work with Python? I am in software too and so understand the pain of having DES that severely affects the ability to work in this field. I hope you can get back to what you love to do.
                Ha, no actually I made this screename in tribute to Eric Idle of Monty Python.

                That being said, I actually did quite a bit of programming (MATLAB) in my last job. But I realize now that for my health's sake, I probably cannot go back to an office workplace. I am at a crossroads now - trying to figure out what to do with my life - but at least I know my eyes will be fairly comfortable for the foreseeable future.
                What you need to know about computer-induced dry eye
                Dry Eye Survey
                IPL Doctors
                Probing Doctors

                Comment


                • #9
                  Originally posted by pythonidler View Post

                  One thing I'd like to emphasize is that you should seek out more than one second opinion. After I quit my job, I saw about 4 different doctors and finally settled on the one at the Mayo Clinic. And I didn't even have an appointment with her originally - I was referred to her by the first "second opinion" that I saw at Mayo.

                  And speaking of referrals, they can be very powerful. The last two ophthalmologists I've seen, I was referred to by other ophthalmologists. But not all ophthalmologists will be willing to refer you to someone else.
                  I'll bear in mind. From your experience, it looks like finding one that works might be like a shot in the dark. I hope to cut to the chase by looking for one who have access to the equipment you mentioned - thanks for all that information! Possibly at a hospital.

                  It's a good sign when the opthalmologist is comfortable with referring you to another one, if he/she feels it can benefit you. I am frustrated that mine so far only referred me to neurologists, rhumatologists and dermatologists - these people might be specialists in their field, but not much about my specific eye conditions. When I asked my opth. whether there is equipment to give a better diagnosis, he simply said no!

                  Comment


                  • #10
                    Originally posted by pythonidler View Post

                    Ha, no actually I made this screename in tribute to Eric Idle of Monty Python.

                    That being said, I actually did quite a bit of programming (MATLAB) in my last job. But I realize now that for my health's sake, I probably cannot go back to an office workplace. I am at a crossroads now - trying to figure out what to do with my life - but at least I know my eyes will be fairly comfortable for the foreseeable future.
                    I see. Speaking of which, recently I was listening to their Always Look on the Bright Side as a pick-me-up from this terrible condition. Good stuff they have. Funnily one of the possible directions I was considering to move to was data, but because of this, might need to be prepared to completely switch gears if it gets worse. You are right, it is not easy to work in an office setting like this and health should not be compromised. Good luck with the figuring out!

                    Comment


                    • #11
                      Originally posted by ltree View Post

                      I'll bear in mind. From your experience, it looks like finding one that works might be like a shot in the dark. I hope to cut to the chase by looking for one who have access to the equipment you mentioned - thanks for all that information! Possibly at a hospital.

                      It's a good sign when the opthalmologist is comfortable with referring you to another one, if he/she feels it can benefit you. I am frustrated that mine so far only referred me to neurologists, rhumatologists and dermatologists - these people might be specialists in their field, but not much about my specific eye conditions. When I asked my opth. whether there is equipment to give a better diagnosis, he simply said no!
                      I can't speak for your doctor, since I don't know him nor do I know all the tests that he's done on you. However, if he's anything like your average ophthalmologist, he probably doesn't have a confocal microscope.

                      The first time I had my nerves looked at through the microscope, it was at the Mayo Clinic (3rd ophthalmologist). They had rarely used it - and it showed - the techs took probably a half hour trying to figure out how to operate it. At my Boston doctor's office, there is a tech who, for as far as I know, works full time operating the microscope as well as other imaging devices. The tech in Boston is a pro. But it costs lots of $$$ to own and operate a microscope like that. Hence why you probably won't find it in the average ophthalmologist's office.

                      I guess what I'm trying to say is if you want good treatment, if you want to get high resolution images of your cornea done by professional techs, you need to find a doctor who is more concerned with finding out what's wrong with you and less concerned with the operating costs of his office. And I think that for the most part, that means looking to doctors in research institutions. Places like a university medical center. Very generally speaking, I believe the doctors who work there are genuinely invested in their research and not concerned with patient costs. You WILL get what you pay for there, and I mean that in a good way.
                      What you need to know about computer-induced dry eye
                      Dry Eye Survey
                      IPL Doctors
                      Probing Doctors

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                      • #12
                        Hi Pythonidler,
                        Thank you for posting your story. I need to post mine as well, as an original and not just a reply. I was drawn to your post because you mentioned a doctor in Boston who has helped you by doing many things including meibomian duct probing. May I ask you who you saw in Boston? Was it Dr. Hamrah? What was your experience with this doctor you saw?


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                        • #13
                          I will post my story later tonight. I have just gotten on to this site as a member. We are going to see Dr. Jarka next week for PRP drops! But I am eager to hear if you felt that probing was one of the main things that helped you.

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