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Every symptom completely gone for 6 hours

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  • UPDATE

    last night was my first night with the cpap. It was weird, going to take a small adjustment, thankfully small. But let me tell you, this is the first night in a few years I woke up and I wasnít planning my next nap. I feel awake, not groggy, my visions more crisp, Iím ready to function. My eyes feel pretty good. These new masks donít leak very badly. I do have this air release in the front of my nose pillow, but it blows outward. So my eyes feel good today. Not perfect, I laid on my right side for 40 mins after I woke up and took off the mask. So my right eyes a bit agitated. Man I miss sleeping on my side. BUT, if I can fix this, my god itís a minor issue.

    My my whole insides feel different, emotionally speaking. I didnít wake up anxious looking for my pills. I feel calm. I feel like my old self actually. No pain, calm and cozy in my bed typing this, feeling great. I have been told 100 times I canít cure this. Iím still not sure I can. But out of all the eye issues I could have, floppy eyelid syndrome is one that can be reversed or eliminated with the right therapy. Am I dead certain on the fact Iíll be cured, absolutely not, but Iím hopeful. Last night made me even more hopeful.

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    • UPDATE

      yesterday was the first day in 14 months that Iíve felt like my old self. Laughing, listening to music, pretty much zero pain or feeling in my eyes. Just loving life pretty much normal. Was a much needed break. Iíve had good days, but none that consistent and good throughout the whole day.

      When end I close my eyes and move the eye in various directions, I donít really feel that rough eyelid rubbing the cornea as much or as badly. When I would close my eyes and look around before, the eye would pop open. The thickness of the lid wouldnít allow it to stay closed as the eye moved around. Now, it opens occasionally, in certain directions or at certain times, but thatís gotten way better too. My eyelashes are no longer pointing downward, theyíre curling up again, Iím healing.

      Comment


      • Really enjoying your progress reports Dowork123 !!! Here's to more and more of the same
        Rebecca Petris
        The Dry Eye Zone

        Comment


        • Originally posted by Rebecca Petris View Post
          Really enjoying your progress reports Dowork123 !!! Here's to more and more of the same
          Every single person including yourself told me to be patient, I could possibly heal. It was so impossible to see that at the time. Reading all the other posts, itís hard not to think the same is going to happen to you. But Iím actually getting better. Only time will tell what the future holds, but I think I might be ok. I might just be able to live a good life again. Iím extremely happy about that. Iím doing EVERYTHING to try and reverse this. Iím lucky Iím in a position to possibly reverse my condition.

          Thank you for everything.

          Comment


          • UPDATE

            I am handling the cpap very well. I can actually sleep with it on, but of course Iíve had some issues. The main issue is the deviated septum. I never knew I had an issue with my nose until recently. When Jain said my eye pain may be a sinus issue, I had a CT scan done. The scan revealed a badly deviated septum. It was pushed over into my left nostril pretty bad. But I didnít think it caused an issue...until I got the cpap.

            Now one I realize, Iím getting almost no air flow through the left nostril. Which is why I used to sleep with my mouth open. I had to take off my cpap last night because my right nostril plugged up. So I may need to consider surgery which sucks.

            Let me also add, I bought a professional grade pulse oximeter. I wanted to see how low my oxygen was getting from smoking weed. It wasnít good. My blood oxygen levels would drop from 98 to anywhere from 92 to 96. I need to quit smoking, thatís next on the list. Working on that now.

            Comment


            • Originally posted by Dowork123 View Post
              UPDATE

              I am handling the cpap very well. I can actually sleep with it on, but of course Iíve had some issues. The main issue is the deviated septum. I never knew I had an issue with my nose until recently. When Jain said my eye pain may be a sinus issue, I had a CT scan done. The scan revealed a badly deviated septum. It was pushed over into my left nostril pretty bad. But I didnít think it caused an issue...until I got the cpap.

              Now one I realize, Iím getting almost no air flow through the left nostril. Which is why I used to sleep with my mouth open. I had to take off my cpap last night because my right nostril plugged up. So I may need to consider surgery which sucks.

              Let me also add, I bought a professional grade pulse oximeter. I wanted to see how low my oxygen was getting from smoking weed. It wasnít good. My blood oxygen levels would drop from 98 to anywhere from 92 to 96. I need to quit smoking, thatís next on the list. Working on that now.
              Glad to hear youíre getting better and time and persistence is the key and you seem to be doing that well. So you only suffer from FES? You donít have any MGD or aqueous deficiency? I remember you saying MGD or was that a wrong diagnoses? Your glands a fully functioning?

              Comment


              • Originally posted by Topher3 View Post

                Glad to hear youíre getting better and time and persistence is the key and you seem to be doing that well. So you only suffer from FES? You donít have any MGD or aqueous deficiency? I remember you saying MGD or was that a wrong diagnoses? Your glands a fully functioning?
                Well itís kind of a word salad...hereís how I see it. Saying, I have MGD, Iís like saying, I ate meat. Itís not specific to the cause. I have MGD, causes by the chronic papillary conjunctivitis that accompanies the FES. However, if you look at my lids and just see this as advanced MGD, you would fail to treat the papillary conjunctivitis which is the root cause of the problem. Iím assuming Iíll always have some sort of gland dysfunction after this trauma. But if I can avoid contact with my pillow, treat the hypoxia from the hypopneas, lower my blood glucose and cholesterol levels and quit smoking. I should be able to reverse the lid laxity and chronic conjunctivitis. So my point is that had I kept on the treatment for basic MGD, I would have killed myself because the pain was too great to bare. Thatís why I urge people not to stop seeing doctors. You may find one that sees something the others havenít.

                I have zero aqueous deficiency by the way. The only reason I had no tears was due to the extreme inflammation effecting the lacrimal glands. Itís was transient due to the FES.

                Comment


                • Originally posted by Dowork123 View Post

                  Well itís kind of a word salad...hereís how I see it. Saying, I have MGD, Iís like saying, I ate meat. Itís not specific to the cause. I have MGD, causes by the chronic papillary conjunctivitis that accompanies the FES. However, if you look at my lids and just see this as advanced MGD, you would fail to treat the papillary conjunctivitis which is the root cause of the problem. Iím assuming Iíll always have some sort of gland dysfunction after this trauma. But if I can avoid contact with my pillow, treat the hypoxia from the hypopneas, lower my blood glucose and cholesterol levels and quit smoking. I should be able to reverse the lid laxity and chronic conjunctivitis. So my point is that had I kept on the treatment for basic MGD, I would have killed myself because the pain was too great to bare. Thatís why I urge people not to stop seeing doctors. You may find one that sees something the others havenít.

                  I have zero aqueous deficiency by the way. The only reason I had no tears was due to the extreme inflammation effecting the lacrimal glands. Itís was transient due to the FES.

                  ah okay, yeah that definitely makes sense. Good to hear youíre not aqueous deficient. Have you got advanced MGD or is it only a mild symptom from the FES?
                  You mention you donít require eye drops, I have moderate MGD. And low oil quantity. Iím too wondering if the inflammation goes down my glands may kick back into action a bit better. Iím thinking of doing a round of azithromycin to see if that helps. 9 months in and I canít believe no doctor has prescribed it to me. Also have to somehow fix this eczema issue which is annoying as ****.

                  Comment


                  • Originally posted by Topher3 View Post


                    ah okay, yeah that definitely makes sense. Good to hear youíre not aqueous deficient. Have you got advanced MGD or is it only a mild symptom from the FES?
                    You mention you donít require eye drops, I have moderate MGD. And low oil quantity. Iím too wondering if the inflammation goes down my glands may kick back into action a bit better. Iím thinking of doing a round of azithromycin to see if that helps. 9 months in and I canít believe no doctor has prescribed it to me. Also have to somehow fix this eczema issue which is annoying as ****.
                    Can you post a picture of your eczema? Have you tried antibiotic cream?
                    I get eczema since I got lasik and it clear up in two days when I use antibioctic cream. I get it every two three months.

                    Comment


                    • Dowork123
                      So my point is that had I kept on the treatment for basic MGD, I would have killed myself because the pain was too great to bare. Thatís why I urge people not to stop seeing doctors. You may find one that sees something the others havenít
                      It's such a crucially important point. Differential diagnosis is so important... but I think that the next trap people fall into when the DO see the multiple doctors, is confusion and loss of trust, because the doctors seem to contradict each other. How can your average patient be expected to know that the diagnoses may be cumulative, rather than mutually exclusive, or that symptoms may result from one, or two or more different conditions, all, some or none of which might actually have been diagnosed (yet)? I think of this as the complex comorbidity problem of dry eye.

                      I have those moments when I just grind my teeth and say to myself WHY does this have to be such frigging rocket science? This is why I do things like make videos about moisture chamber glasses that I assume no one will want to watch, just in case of the ones that might be helped. At the end of the day, there's almost always stuff we can do to improve symptoms and get through the day even when we have not yet pieced together our own personal dry eye jigsaw puzzle in all its theoretical intracacies.
                      Rebecca Petris
                      The Dry Eye Zone

                      Comment


                      • Originally posted by Rebecca Petris View Post
                        Dowork123


                        It's such a crucially important point. Differential diagnosis is so important... but I think that the next trap people fall into when the DO see the multiple doctors, is confusion and loss of trust, because the doctors seem to contradict each other. How can your average patient be expected to know that the diagnoses may be cumulative, rather than mutually exclusive, or that symptoms may result from one, or two or more different conditions, all, some or none of which might actually have been diagnosed (yet)? I think of this as the complex comorbidity problem of dry eye.

                        I have those moments when I just grind my teeth and say to myself WHY does this have to be such frigging rocket science? This is why I do things like make videos about moisture chamber glasses that I assume no one will want to watch, just in case of the ones that might be helped. At the end of the day, there's almost always stuff we can do to improve symptoms and get through the day even when we have not yet pieced together our own personal dry eye jigsaw puzzle in all its theoretical intracacies.
                        I Agree, I went through the same process, itís a rollercoaster. What kept me pushing on was a few things. I just knew in my heart/gut something was wrong with the diagnosis. I couldnít tell you what or why, but I knew something was overlooked. I knew I couldnt figure this out on my own. Iím pretty intelligent, but this was beyond basic Intelligence. It required a skilled detective to figure this out. I also just got lucky.

                        But it youíre right, most people wouldnít know that these things build on each other, or are different diagnoses, etc. thatís what makes this so hard. I had no clue until I could look back on it. Not to mention money. Most people canít just keep seeing doctors. There are a lot of moving parts keeping people in the dark and in pain.
                        Last edited by Dowork123; 14-Dec-2018, 04:47.

                        Comment


                        • What kept me pushing on was a few things. I just knew in my heart/gut something was wrong with the diagnosis. I couldnít tell you what or why, but I knew something was overlooked.

                          That is how I feel. I canít find anyone who is as affected by blinking as me and my recent TBUT was 8s and 10s, osmolarity in high 280s but with positive MMP9. The doc was about my progress, yet she canít give me a reason for blinking manually, feeling blinks or blinking pain. Often I only feel slight eyelid movement. Of course,maybe I just have crazy symptoms.

                          Comment


                          • Originally posted by hopeful_hiker View Post


                            That is how I feel. I canít find anyone who is as affected by blinking as me and my recent TBUT was 8s and 10s, osmolarity in high 280s but with positive MMP9. The doc was about my progress, yet she canít give me a reason for blinking manually, feeling blinks or blinking pain. Often I only feel slight eyelid movement. Of course,maybe I just have crazy symptoms.
                            One thing I forgot to mention was a video I saw by dr cremers. She said, if you feel your eyes, youíre creating scar tissue. You shouldnít feel your eyes. That was another driving force. Sounds like you have specifically an eyelid issue. Because yes, your numbers look good. But if you have blinking pain, somethings going on. Keep pushing for answers.

                            Comment


                            • UPDATE

                              So I missed my appt w dr Jain yesterday because apparently I never put it in my calendar. Thankfully heís working Friday and could see me. So I go tomorrow at 11am. Slightly nervous because my pressure was up a month ago. Iím assuming weíre going to taper the steroids to every other day or stop if the pressure is high. So a little worried about that. Otherwise the eyes are good. I want them perfect of course but theyíre good. I should be happy I donít need drops or tape at night.

                              Mentally however. Iím bad. I keep tapering my Xanax. I did some math, Iím taking .2112mg a day broken into 3 doses. I made a cut the other day and Iím just a mess again. Iím hoping to be completely off in 40-60 days then the real fun begins.

                              I have decided to stop posting about suicide or how I feel too much on here anymore. It does need to be discussed, but Iíve discussed it more than enough. I have decided to go to a suicide and depression forum and talk to some people there, seeing as how my eyes arenít really the issue anymore. I may not be around as much but Iíll post my updates on here.

                              Im just realizing our lives are very sensitive because of this problem we all face. The way we are thinking may be skewed by pain. Sometimes reading a post about death makes it seem welcoming. I do not want that to happen here. I do not want anyone here to kill themselves or even hurt themselves. I wouldnít want to contribute to that. I guess the lines between my mental health and physical health became blurred, because theyíre intertwined. But now that Iím feeling better and also realizing my words probably have some effect on people, I need to slow certain contributions here.

                              Anyway, I hope you are all well. I would encourage you to seek additional help also if you feel mentally unstable. Talking to other people who are unhappy with their life definitely helps. Especially breaking out of the dry eye community. There are a lot of people that are mentally ill because they are suffering from a physical illness. I guess it makes me feel less alone to know others struggle as well. Itís good to hear them talk.

                              Comment


                              • Originally posted by Dowork123 View Post
                                UPDATE

                                So I missed my appt w dr Jain yesterday because apparently I never put it in my calendar. Thankfully heís working Friday and could see me. So I go tomorrow at 11am. Slightly nervous because my pressure was up a month ago. Iím assuming weíre going to taper the steroids to every other day or stop if the pressure is high. So a little worried about that. Otherwise the eyes are good. I want them perfect of course but theyíre good. I should be happy I donít need drops or tape at night.

                                Mentally however. Iím bad. I keep tapering my Xanax. I did some math, Iím taking .2112mg a day broken into 3 doses. I made a cut the other day and Iím just a mess again. Iím hoping to be completely off in 40-60 days then the real fun begins.

                                I have decided to stop posting about suicide or how I feel too much on here anymore. It does need to be discussed, but Iíve discussed it more than enough. I have decided to go to a suicide and depression forum and talk to some people there, seeing as how my eyes arenít really the issue anymore. I may not be around as much but Iíll post my updates on here.

                                Im just realizing our lives are very sensitive because of this problem we all face. The way we are thinking may be skewed by pain. Sometimes reading a post about death makes it seem welcoming. I do not want that to happen here. I do not want anyone here to kill themselves or even hurt themselves. I wouldnít want to contribute to that. I guess the lines between my mental health and physical health became blurred, because theyíre intertwined. But now that Iím feeling better and also realizing my words probably have some effect on people, I need to slow certain contributions here.

                                Anyway, I hope you are all well. I would encourage you to seek additional help also if you feel mentally unstable. Talking to other people who are unhappy with their life definitely helps. Especially breaking out of the dry eye community. There are a lot of people that are mentally ill because they are suffering from a physical illness. I guess it makes me feel less alone to know others struggle as well. Itís good to hear them talk.
                                Dowork123

                                goodluck with everything I wish you all the best and Iím so glad your eyes are doing great now. Look after yourself and enjoy what youíve got back that at one point you never thought you would. Always remember and be grateful. Cya mate

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