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  • 3 years of dry eye at 20 years old

    UPDATES: I figure since I'm so young and an am anomalous case, I've posted an update as a comment that's currently on page two of this thread. I'll continue to post weekly updates as I don't think I've seen that many comprehensive post-LipiFlow journals on these forums.

    I've also posted a very similar thread in another subforum so I'm going to do updates on that one only as to avoid double-posting.

    http://www.dryeyezone.com/talk/forum...sful-treatment

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~

    Hi all, long post incoming.

    TLDR; terrible MGD and pain, no treatments have worked, getting demoralized about dry eye.

    I first experienced dry eye symptoms at age 17 and its been 3.5 years now. My symptoms are terrible pain from MGD, not aqueous deficiency and no treatment works. Treatments I've tried but failed to get any relief from:
    • preservative free lubricant eye drops
    • daily warm compresses
    • fish oil for several months
    • oral doxycycline
    • Alrex, Lotemax, FML, prednisolone steroid drops
    • 50% autologous serum drops for a month
    • Azasite and oral azithromycin
    • Cliradex wipes for 3 weeks
    • moisture chamber goggles
    • Restasis for 10 months
    • Xiidra for 3 weeks
    • meibomian gland probing (worked for only two days)
    • scleral lenses (can't tolerate very well for more than a few hours)

    The worst part about all of this is that my symptoms are all much worse than the signs. My meibomian glands are all still intact and no atrophy has occurred, my corneal staining is normal, my tear osmolarity is also in the normal range but my TBUT is 2-3 seconds in each eye and my lipid layer thickness is also below 50.

    My ophthalmologist is the director of the dry eye and corneal disease center at a major Ivy League hospital so I have no doubt that she's giving me the best options possible but nothing helps with symptoms. I've also seen a rheumatologist and all the labs were normal for basically every autoimmune disease I was tested for. Every day my eyes are red from dryness and give me pain that gets worse as the day goes on. I'm concerned that my symptoms are already so bad when I'm this young that in the future I'll barely be able to keep my eyes open. The pain is bad enough that it interferes with my work and studies, especially during the winter when it is very dry outside. I have never been suicidal but this pain has made me think that being dead would bring relief from the eye pain. Honestly I'm getting very demoralized about my prospects in the future because of MGD and my symptoms.

    Any suggestions on what to try next? I am considering LipiFlow and IPL but both are very expensive and I'm not sure I'd find relief from them.
    Last edited by chenpachi; 26-Oct-2017, 20:16. Reason: Updates

  • #2
    Hi
    ​​​​​​First of all, I'm so sorry to hear about your situation. I can't imagine how much pain you must be in. But please don't lose hope and heart. It's easier said than done. I know. I'm not an expert in this but all I can say is please talk to your family and friends. I know they'll never understand what it is like to have this condition
    ​​​but their support and encouragement will help and you won't feel alone.

    Comment


    • #3
      Hi,

      Sorry to hear you've not found relief yet, I'm in the same situation, tried almost everything and at the point where I'm having to wait for new treatments to become available in my country.

      One thing I don't think I saw on your list that some here find helpful for MGD is hypochlorous acid sprays applied to closed eyelids. Avenova, EyeLove Heyedrate, Briotech Skin Spray, Ocusoft Hypochlor, Natrasan First Aid Spray, VitalBaby Aquaint are all brands with a little bit of hypochlorous with water/saline. Avenova is prescription only while the rest are over the counter.

      In terms of preservative free eye drops, have you tried ones with a lipid/oil component? For example Refresh Mega-3 (castor oil, flaxseed oil), Retaine MGD / Cationorm (mineral oil), Emustil (soybean oil).

      Some find improving the quality of the meibomian oils with antioxidants helpful. That can be via vitamins in food, drink (citrus green tea etc.), supplements (astaxanthin, lutein, zeaxanthin) or eye drops (VisuXL which has Coenzyme Q10 and Vitamin E as antioxidants).

      You could also maybe look into allergy testing, some find allergan irritants cause a lot of inflammation.

      You could also consider Xiidra (lifitegrast) and/or Restasis / Ikervis (cyclosporine) to reduce the painfully red inflammation. I'm hoping to try Xiidra when it's approved on the NHS here in UK (already given Ikervis a good go).
      Sufferer due to Toxic Epidermal Necrolysis.
      Avatar art by corsariomarcio

      Comment


      • #4
        Thanks for the responses everyone. I forgot to mention that I did try restasis for 10 months and xiidra for 1 month but neither gave me relief.

        I'm going in for consultations for IPL and LipiFlow later this month. Hopefully one of those work.

        Comment


        • #5
          Hi chenpachi. Like you, I had severe MGD and tried all the things you did, but nothing worked for me either. It was not until I methodically tried different changes to my diet, did I ultimately find what my system needed to improve the quality/flow of my oils from the inside out.

          It was actually a two step process. Now I am better, mainly from probing to unblock glands (including many with scar tissue), COMBINED with finally finding the right diet changes to get oils flowing, so glands not get blocked up again. You may also want to consider diet changes.

          After each of first four probe procedures over two years, like you, my eyes felt a little better, but within a week would always go back to being just as dry as before, despite making different changes to my diet. After my fifth/last probing almost two years ago, I started drinking fresh lemon juice in strong green tea 2x daily, and within a week my eyes felt more moist...I had finally found the diet change that was the major turnaround for me.

          Because of this, I was able to start wearing my sclerals again. I now wear them 12+ hours a day comfortably. Lemon/tea may not work for you, but perhaps some other diet changes and/or meds like doxycycline to change the quality of your meibum from the inside out. Here's a post where I listed major factors that helped me improve and manage my condition, including foods, in case there's something there that may help you:

          http://www.dryeyezone.com/talk/forum...ccumulate-info

          Comment


          • #6
            Hey! I'm 21 and suffering with constant eye pain that impairs my daily life too so I can totally relate about feeling depressed and as if this will never end but just think- we are young and have so much time, surely we'll eventually find something that will help us? Don't give up and through this I have learned to take each day as it comes and not think about the future because when I'm thinking about the future such as job prospects and having children I seem to get the most down. I know its hard right now you'll pull through, just try and find joy in the little things like having a warm bath or listening to your favourite tv show This forum also helps me when I feel down, reading the dry eye victories and knowing that theres some hope always gives me a little bit of a boost.

            Comment


            • #7
              Chenpachi, have you tried expressing your own glands? I bought the actual tool from eBay for about $50 and express everyday after a hot compress. It's important to keep the glands open. Just search ebay for "meibomian gland expression tool." Mine looks like a tweezer with paddles at the end measuring 3 x 4mm.

              Comment


              • #8
                Hi again everyone.

                As an update, I am getting LipiFlow done this Thursday. I'm really anxious because LipiFlow and IPL are now the only two treatments that I haven't tried and if either doesn't work, I honestly don't know what to do anymore.

                Comment


                • #9
                  Hi chenpachi
                  LipiFlow helped me about 65%. Other things have helped me are:

                  Lid cleanser with (pure) Hypochlorous Acid
                  like Avenova - many and more doctors in USA recommend it, or Heyedrate Lid & Lash Cleanser - really amazing!

                  Combination of Omega 3 + 6/GLA is more effective than omega 3 alone

                  Good luck!


                  Last edited by MGD1701; 17-Oct-2017, 07:33.

                  Comment


                  • #10
                    Originally posted by chenpachi View Post
                    Hi again everyone.

                    As an update, I am getting LipiFlow done this Thursday. I'm really anxious because LipiFlow and IPL are now the only two treatments that I haven't tried and if either doesn't work, I honestly don't know what to do anymore.
                    Live life like a legend. Please do not stress as this worsens the symptoms by at least 10*.
                    The brain is a powerful contrivance. I believe the brain is the cure to any disease. You just have to train it to fight against the problem.

                    P.S. Not sure about conditions/diseases which directly affect the brain though!

                    Comment


                    • #11
                      Originally posted by MGD1701 View Post
                      Hi chenpachi
                      LipiFlow helped me about 65%. Other things have helped me are:

                      Lid cleanser with (pure) Hypochlorous Acid
                      like Avenova - many and more doctors in USA recommend it, or Heyedrate Lid & Lash Cleanser - really amazing!

                      Combination of Omega 3 + 6/GLA is more effective than omega 3 alone

                      Good luck!

                      LipiFlow helped you? It seems most people think it's a waste of money. Did you just do it one time/how long has it been since the treatment?

                      Comment


                      • #12

                        Yes, LipiFlow helped me. I think hosanna13 also got it recently and she considers it helped her too.
                        I did once, about 1.5 year ago.

                        It helps if glands are clogged but it is NOT a magic for everything so you need to do right order, combination, timing etc. & identify causes. For example, if you other issues like inflammation, scar tissues etc. also need to be tackled.


                        Last edited by MGD1701; 23-Oct-2017, 09:50.

                        Comment


                        • #13
                          Originally posted by chenpachi View Post
                          Hi again everyone.

                          As an update, I am getting LipiFlow done this Thursday. I'm really anxious because LipiFlow and IPL are now the only two treatments that I haven't tried and if either doesn't work, I honestly don't know what to do anymore.
                          I used to think that way as well. I remember thinking before I got LipiFlow, "if this doesn't work, I don't know what to do." But of course I didn't know about IPL or probing, the former which helped me after getting the latter.

                          There are always other options that you don't know about. I'm sure even though your doctor is at an Ivy League hospital, there are things that she doesn't know about. Never give up, because there are always things you haven't tried yet.
                          What you need to know about computer-induced dry eye
                          Dry Eye Survey
                          IPL Doctors
                          Probing Doctors

                          Comment


                          • #14
                            MGD1701, where did you get the Lipiflow procedure?

                            Comment


                            • #15
                              Hi MGD_OcularRosacea

                              I am not in USA. You mentioned in another post: ''Dr Toyos said my oil is like butter. He also said to stop all lid scrubs and warm compresses because he believes it makes it worse.''
                              Just curious if Dr Toyos
                              1) recommended treatment plans including alternatives to control your inflammation/MGD issues?
                              2) did InflammDry test & checked if you have demodex to identify source/level of infammation?
                              Last edited by MGD1701; 25-Oct-2017, 19:32.

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