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  • #61
    Originally posted by Dowork123 View Post

    I saw that picture...it was gnarly. Looked extremely painful. Whatís so odd about my eyes, they donít ever really look bad at all. A little pink on my lid margins, a few veins in my eyes, but no big deal. Even if I feel a full on allergic reaction, my lids donít swell, my eyes donít get red, it just feels like chemicals in my eye...or soap.

    Curious if the thinner mask worked for you? enjoy your trip and glad to hear youíre hopeful for a great winter. You have sjogrens correct? I think that, if you do, xiidra can help you. Because your issue is autoimmune related, I think lowering your T cell count makes sense. So I think youíre on a great path. I hope xiidra works for you. Are you having any side effects, pain or bad taste in your mouth?
    It wasn't as painful as it was upsetting. I would go to bed looking not too bad and wake up like that...yesh.

    I got the thinner mask to use but had been storing it in the freezer and it smelled like a BBQ so I have to leave it out a few days and wash it well with oxyclean or something cause I couldn't sleep with the smell of food wafting up my nostrils.

    You are correct, I do have Sjogrens but have no bad taste because I am quadra plugged. It is bitter though I can tell you that and would taste nasty.

    Comment


    • #62
      UPDATE

      things are getting better, I found a tape at the dry eye shop thatís been good to me last night. Iíll use this now for a few days and decide weather I need to move on or I can tolerate it. I will say, the best part about the tape, it conforms to your lids so it doesnít feel stiff and intrusive. I got 4 straight hours of sleep which was amazing. But about two hours after I woke up, the burning in that right eye started again. I donít know why I canít be happy for he progress Iíve made, I just focus on that burning. I hate the burning so much.

      I can tell Iíve been really anxious lately. Iím worried about a debridement in my right eye...and for what? Iím getting ahead of myself. I need to relax and just know that this is going to take time. Which may mean more suffering, but I have no choice. Iím really scared that even after taping my lids and getting things better, it still wonít be good enough. Very sad about that...but again, getting ahead of myself.

      Everything else is going good. My diet and training are back on point. Hopefully Iíll get this sleep study done soon. The tapering off drugs is going well...difficult, but not too bad.

      Comment


      • #63
        UPDATE

        Well, thereís good and bad I guess. The good is that I am getting better, slowly but surely. The bad news is, Iím pretty sure Iím not going to get where I want to be. Itís clear that the damage is done and I canít really escape it. So Iím having a rough day. Itís killing me because the last two days Iíve had great days with my wife and family. The best days Iíve had since this all happened.

        Yet Iím still angry, Iím still bitter about this. I donít know how or when Iíll ever get past this. Like Dano said, I just canít make peace with this. Iím trying so hard believe me...and failing none the less. Iíve done so good not focusing on the future. Then today I canít help myself but to torture myself. I also know some of this is brought on by stopping the insanely addictive drugs Iím on.

        But Iím just scared...Iím just a scared monkey. You know how fragile life is...I mean a f&*king tooth infection is all it takes for a silverback gorilla to lose his alpha status and end up in a corner, scared for the rest of his life. Thatís how I feel. I was so strong. I could do anything. Now Iím just feeble. I cry a lot. Iím crying now. Iím not suicidal, which maybe is even worse. Because I know I have no choice but to face this. My father abandoned our family, I cannot do that to my daughter. So I have to be here, in pain, suffering.

        You know, I was listening to a man talk about transcending your suffering...by accepting it and doing something meaningful, so you can justify your wretched existence. I believe that...but I just donít have it in me anymore. I wax and wane so much itís killing me.

        Iím not myself. Iím not sure Iíll ever find that guy again and that kills me. Iím afraid to sleep. Iím constantly worried or annoyed or scared or insert horrible emotion here. Iím being rude to people who donít deserve it. Iím complaining just to complain. I hate myself. I donít recognize myself.

        Anyway, my eyes are better, my brain is not. The left eye, I can live with. The right eye, I cannot. I have to keep doing this...I donít have a choice. Hopefully something can change but itís looking like thatvwill not be the case.

        I mean everyone downplays my problems. Itís good, not perfect, but good. What does that even mean? Because I donít feel good. I think thatís just a cursory statement to keep me from putting a gun in my mouth. Because the reality is, this is f$*cked up man, the entire cornea is damaged to some extent and the chances that it will heal now, are next to none.

        I domt even know what to say anymore...I think this is why people leave the board and never return. Itís just too hard to keep fighting for something to never get the comfort you desire. You just have to accept your shitty hand and spend a good portion of your life trying to just feel like shit, rather than feeling like total shit. Without a cure, I donít see a point in discussing treatment anymore. Iím spinning my wheels. Hereís the reality, I have a few drugs, doxy, steroids, autologous serum and artificial tears. These are the only things I can safely use and steroids are questionable at a point. The rest are procedures. PTK, debridement, Stromal puncture. The procedures are risky and donít guarantee anything. They could make things worse, so those are pretty much out of the question. So thatís what I got...I could argue azasite vs doxy or erythromycin...but for me, Iím allergic to everything so once I find something that works, I stick with that, because options are limited. So discussing drugs is pointless now...I guess this either works or it doesnít. Iím going to be on this plan for 4 more months...Iím hopeful but pessimistic, which may not make sense. Just goes to show you how all over the place I am.

        If you made it this far, thanks for listening.

        Comment


        • #64
          Could you remove the bad eye?

          Could you get sclerals to cover the eye?

          Those are your choices it appears. Im in the same boat. So i made an appointment for laserfit sclerals. I go in a few weeks.

          IPL two on Wednesday. IPL three will be three weeks after. Then i go to Dallas.

          If that doesnt work im removing the bad eye. If that doesnt work... hmmm. Blind? Hard to say.

          But try sclerals. ASAP.

          Comment


          • #65
            Originally posted by edmunder View Post
            Could you remove the bad eye?

            Could you get sclerals to cover the eye?

            Those are your choices it appears. Im in the same boat. So i made an appointment for laserfit sclerals. I go in a few weeks.

            IPL two on Wednesday. IPL three will be three weeks after. Then i go to Dallas.

            If that doesnt work im removing the bad eye. If that doesnt work... hmmm. Blind? Hard to say.

            But try sclerals. ASAP.
            I didnít convey this very well, but Iím on this program for 4 more months and I will not change anything unless Jain approves it. I want sclerals trust me, I will most likely end up with them. Unless they help me recover now, during this 4 months, otherwise I donít want to bandage my issue w a scleral. After the 4 months, if Iím still not happy with my ďhealingĒ, Iím doing the laserfit as well. Thatís the problem man, I have to wait for so long to do things to make sure I know whats effective and so on.

            Im not removing my eyes before I try a surgery. I would do a debridement or PTK before that. But Iím realizing I have corneal issues that just wonít resolve on their own. In the beginning, everyone made it out that MGD was my main issue and the corneal stuff was superficial and secondary to the MGD. I am pretty sure now that all the inflammation is gone, that is not the case.

            So conin to this realization basically made me realize, I have to make more choices. Choices that are not guaranteed and are extremely painful. Again, I may end up removing the eye, but Iíd like to avoid that. But again, avoiding removing my eye means surgery and pain. It creates more choices, choices I donít want to make. That debridement hurt so bad I cannot even explain it. Just like you canít explain your pain. I mean the pain went from the front of my eye, into my nose and then into the back of my skull. It felt like someone was tickling my nose constantly...it wasnít pleasant however. To think about doing hat again and being in pain for 8 months...just thinking about it makes me sick.

            So yeah, Iím on it...itís the mental part ****ing with me right now.

            Comment


            • #66
              I gotta say this too..Iím taking my own blood and making my own serum now. Think about that for a minute. I put a needle into my own arm and then have my mom pop in the vacutainers. This is my life now. My moms healthier than me and she broke her neck 5 years ago. **** me.

              Comment


              • #67
                Originally posted by edmunder View Post
                Could you remove the bad eyebal?
                call me crazy but I'm thinking it's better not to go round suggesting people have their eyeballs removed..

                Comment


                • #68
                  Originally posted by Meibum Ian View Post

                  call me crazy but I'm thinking it's better not to go round suggesting people have their eyeballs removed..
                  Trust me its not said lightly. I know doworkís situation. The reality is sometimes very dark and terrifying.

                  I wear goggles 24/7. Plus im using steroids and blood serum. Still a lot of pain in my left eye. My right eye really responding to the first IPL. I think i will be ok eith a scleral in that eye. Lots of oil. Close to normal.

                  But im also working on seeing who needs to be seen to remove my bad eye.

                  Its hard to explain intense, never ending eye pain.

                  Im not saying it in jest or taking it lightly.

                  Comment


                  • #69
                    Originally posted by edmunder View Post

                    Trust me its not said lightly. I know doworkís situation. The reality is sometimes very dark and terrifying.

                    I wear goggles 24/7. Plus im using steroids and blood serum. Still a lot of pain in my left eye. My right eye really responding to the first IPL. I think i will be ok eith a scleral in that eye. Lots of oil. Close to normal.

                    But im also working on seeing who needs to be seen to remove my bad eye.

                    Its hard to explain intense, never ending eye pain.

                    Im not saying it in jest or taking it lightly.
                    Did you go see Jain? Iím curious what he said. I know you donít mean that lightly...Iíve been looking at the procedure and itís not great either. Your socket could still hurt.

                    Comment


                    • #70
                      Not to deny anything you've written but some possible counter arguments..

                      Originally posted by Dowork123 View Post
                      But Iím just scared...Iím just a scared monkey. You know how fragile life is...I mean a f&*king tooth infection is all it takes for a silverback gorilla to lose his alpha status and end up in a corner, scared for the rest of his life. Thatís how I feel. I was so strong. I could do anything. Now Iím just feeble. I cry a lot. Iím crying now. Iím not suicidal, which maybe is even worse. Because I know I have no choice but to face this. My father abadoned our family, I cannot do that to my daughter. So I have to be here, in pain, suffering.
                      You have the advantage of greater logic and reason. To see and understand your subconscious responses and challenge and modify them. You are extracting and spinning your own serum drops. I know of no gorillas who can do this, silverback or otherwise. It's the best thing you can be putting in your eyes and I think it's cool as hell that you can prepare an unlimited supply of it yourself.

                      Your first post talks about being symptom free, albeit temporarily. Feel free to challenge any of my thinking on this - I don't have all the info. Could it imply that your eyes have sufficiently good structural integrity? Enough functional glands to make a sufficient quantity and quality of oil, and aqueous tears too. If you have excessive and irreversible corneal damage, why could you feel ok during that time?

                      I've had moments like you describe and it feels amazing. Makes me wonder how I manage the rest of the time. How unpleasant it actually is. The last time was over a month ago, and I've been chasing it since. Working constantly, forced blinking with eyelids that feel like they have razors in them, thinking it will not come back. And then, it does.

                      I feel the doubt, pessimism and frustration come in flashes over a few days. Then it reaches a point where I just break down and cry. Feel feeble like you say, that everything I'm doing is futile. That I won't get better. In the moment it all feels completely real, and makes more sense than my relative optimism the rest of the time. Then it passes and I can carry on, one step at a time. Like a pressure cooker blowing off steam.

                      Your trend now is one of improvement. That's the headline. I'm guessing there were maybe times you thought you wouldn't get this far? Like you say - you, and all of us, have no choice but to keep going.

                      Sorry if any of this misses the mark..

                      Comment


                      • #71
                        Originally posted by edmunder View Post

                        Trust me its not said lightly. I know doworkís situation. The reality is sometimes very dark and terrifying.
                        I know, and don't mean to trivialise your or anyone's experience. I just think it's potentially a dangerous idea to be spreading publically.

                        Comment


                        • #72
                          I dont think the socket would have any issues. All the pain is cornea pain.

                          Also many people sadly get eye cancer and remove their eyes without issue.

                          Serious MGD or tear issues may nske it hard to wear a fake eye comfortably. But id take an eye patch and no eye pain. Get a huge pirate tattoo. I actually know a guy who sadly passed from eye cancer that spread. Said the eye removal didnt cause any issues.

                          Trust me im getting IPLs and flying to Dallas for laserfit sclerals.

                          Options.

                          Comment


                          • #73
                            Iím extremely suicidal...itís not my eyes per say. I mean it is, it always is, but theyíre doing well. Theyíre doing better all the time Iím just so drained I just canít man. I wish I had a power button and I could just power down for a week. I canít keep dealing with this stimulus. My brain is detaching me from reality I believe, in a way to cope with the stress and change im dealing with. So I feel like Iím going insane. I do not know what my future holds. Iím not happy in this body anymore. Ugh. I canít even be happy with the progress Iíve made. I just want my old life back. Itís gone, forever.

                            EDIT: Iím not sleeping, Iím sick a lot,..Iíve called this doctor twice about my sleep study and have been told Iíll get a call back, but no call. Called my mom over to watch my daughter today. Iím going to limit my drops today and see what happens. I donít know, Iím trying everything and not sure what to do anymore.
                            Last edited by Dowork123; 25-Sep-2018, 06:43.

                            Comment


                            • #74
                              UPDATE AND HELP NEEDED

                              Hey everyone, Iím having some distressing issues with my eyes particularly my left. So Iíve noticed that since Iíve been taping my eyes, I get weird visual disturbances in both eyes and additional issues with the left. In both eyes, upon waking, I notice a haze around any light, my alarm clock, the power light on my TV, anything producing or reflecting light. Also, in both eyes, I cannot see close enough to read well. Itís blurry up close for about 20-30 mins.

                              The left eye has additional issues, Iím noticing a doubling of my HOAs. So much more ghosting, glare, halos and starbursts than before. Itís like the glare doubled in size, itís very noticeable now between the two eyes and itís not just the morning, the last two days Iíve noticed it all day.

                              So whatís different...im using 100% serum, taping eyes shut, not sleeping on my back anymore (back to face mashing, worried if this is it), using less drops, using gel instead of ointment, doing my compress for less time 8-12 mins instead of 15-20.

                              I may start going back to what I was doing before. May try goggles again, I know farmgirl suggested the onyix goggles, so I bought those. Maybe now that my cornea is healed better, it can handle the goggles.

                              This is so hard...im not sure how to fix this other than trial and error. Anyone has a suggestion, itís always welcome, thanks.

                              Comment


                              • #75
                                As you know, I'm also taping..

                                When I wake, on a good morning, My vision is extremely blurry. Like not able to see what's on my phone. In my case this is from thick oils that have been secreted overnight covering my eye.

                                On a bad morning, or if I don't tape, vision is ok but eye is extremely dry and eyelids feel painful and scratchy to open and close.

                                Could this be what's happening for you?

                                Comment

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