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  • Originally posted by Topher3 View Post

    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
    Great advice, Iíll try brother. Good luck as well!

    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.
      Good luck Dowork123. Hoping for some good remarks from Dr. Jain. Please don't forget to ask about chloroquine phosphate eye drops to Dr. Jain.

      Comment


      • UPDATE


        presure was 19/20 and is bordering high. He had images taken of the optic nerve for comparison years down the line. He said that my pressure being 20 or a bit higher may not have any impact on the nerve. The only way to know is to have a baseline picture. So we took that today.

        He actually did the opposite of what I thought he would do. He wants me to do a rapid taper of the methylpred. So 4/3/2/1 again but dropping every 3 days as opposed to 7. I still have the papillary reaction. He did a lissimine green stain to check the conjunctiva, lid and ocular surface. Looks pretty damn good aside from the papilae.

        I asked him about what we do next and we follow up in a month and go from there. He asked me to see the occuloplastic doc to see if lid resectioning would help. Iím going to make the appt and get a consult. See what he says. Iím not doing any surgeries until Iíve tried doing this for at least 18 months. Thatís how long it took to regain normal lid tension and stop the chronic papillary conjunctivitis.

        The chloroquine phosphate, heís never used it. But he prefers 1% compunded cyclosporine for people with SjŲgrens or rheumatoid arthritis.

        So thatís the update. Iíll keep you posted on the steroid taper. You have to aggressively stop the inflammation. That is key. He is the only doctor not afraid to treat the inflammation with steroids. Most doctors focus when giving steroids is to limit them. Heís using the maximally as a tool. Huge difference. And heís being smart about it...but unless we tear the inflammation, this never goes away.

        Comment


        • Originally posted by Dowork123 View Post
          UPDATE


          presure was 19/20 and is bordering high. He had images taken of the optic nerve for comparison years down the line. He said that my pressure being 20 or a bit higher may not have any impact on the nerve. The only way to know is to have a baseline picture. So we took that today.

          He actually did the opposite of what I thought he would do. He wants me to do a rapid taper of the methylpred. So 4/3/2/1 again but dropping every 3 days as opposed to 7. I still have the papillary reaction. He did a lissimine green stain to check the conjunctiva, lid and ocular surface. Looks pretty damn good aside from the papilae.

          I asked him about what we do next and we follow up in a month and go from there. He asked me to see the occuloplastic doc to see if lid resectioning would help. Iím going to make the appt and get a consult. See what he says. Iím not doing any surgeries until Iíve tried doing this for at least 18 months. Thatís how long it took to regain normal lid tension and stop the chronic papillary conjunctivitis.

          The chloroquine phosphate, heís never used it. But he prefers 1% compunded cyclosporine for people with SjŲgrens or rheumatoid arthritis.

          So thatís the update. Iíll keep you posted on the steroid taper. You have to aggressively stop the inflammation. That is key. He is the only doctor not afraid to treat the inflammation with steroids. Most doctors focus when giving steroids is to limit them. Heís using the maximally as a tool. Huge difference. And heís being smart about it...but unless we tear the inflammation, this never goes away.
          When you say inflammation,is that the eyelid or eye itself?
          how do they know you have inflammation?
          My doctor never told me about it.

          Comment


          • My life is so shitty. I donít know if there is a God but there is f*** you.

            Comment


            • Originally posted by ebi1368 View Post

              When you say inflammation,is that the eyelid or eye itself?
              how do they know you have inflammation?
              My doctor never told me about it.
              He said he was going to check for inflammation. He instilled the lissimine green, had me look left, righ, up and down and then told me I still have the papillary reaction. Then increased the steroids.

              Comment


              • Originally posted by ebi1368 View Post
                My life is so shitty. I donít know if there is a God but there is f*** you.
                He also flipped the lid right before he dyed the eye.

                Im so sorry, I wish everyone had access to a good doctor. This guy is tracking EVERYTHING. Heís not guessing. Heís making very calculated decisions based on what heís seeing. Most doctors are guessing.

                Im really sorry, if you want to talk shoot me a message. I wish there was something I could do.

                Comment


                • Thanks for response and support

                  Do you have plugs?

                  Since I did 4 plugs, i get overflow which burn my eyes. I assume it is reflex tear. Could it be due to allergies?

                  for me burning is still better than dry eye. But it is so inconvenient.

                  Comment


                  • ebi1368 Im glad youíre feeling better even if itís not perfect. I have no plugs. For me, because my eyelids are my main issue, anything that would cause inflammation is avoided. Plugs would cause inflammation for me, same with sclerals. As a matter of fact, he told me to stop using Hypochlorous acid spray on my eyes, just some distilled water. He said any time I can avoid chemicals around or in my eyes, I should avoid them. I told him that last time I stopped I got super inflamed. He feels that now we have things under control, it shouldnít be an issue. Iíll let you know if I get burning again from stopping the spray. Everything else is the same and we increased the steroids for 12 days.Iím glad youíre feeling a bit better even if its not perfect

                    Comment


                    • UPDATE

                      ive only stopped the avenova for two days. But In these two days, me eyelids have stopped sticking together. Iím assuming increasing the steroids helped that as well.

                      But today, I am as close to my old self as I have ever been since this started. I have zero anxiety leaving my house without drops, Iím not constantly worried about my eyes. Iím not thinking about them very much honestly. Past of this is because of my doctor. Iím worried constantly heís going to pull my meds....and every single time he comes up with something else that helps me. Heís treating me correctly and I feel great about that. Iím honestly shocked and delighted. Every other doc barely gave me any medication. None of them were concerned about preservatives, none of them has access to a compounding pharmacy and any drug they want. I feel lucky. Iím going to go actually enjoy my day today like a normal human. I hope you guys and gals out there suffering get some relief. I never thought Iíd be writing this. Keep pushing for answers please donít give up.

                      Comment


                      • I had to start the avenova back up. After two days I knew I had to keep cleaning my eyes. Water was not cutting it. Would have been nice to stop, but Iím no fool. It works very well actually, regardless of the light burn.

                        I wish I could talk to other people with my specific disease. I appreciate you all here so please donít take that wrong. I just wish I could understand if this effects other people as much as it effects me. It would be nice to talk to a few people that have had this for a while. I donít know anybody with this diagnosis.

                        Anyway, Iím doing very good in the eye department, mentally not so great. But I shouldnít be complaining. Hope everyone is having a great holiday.

                        Comment


                        • UPDATE

                          Hello everyone, hope the new year is being good to everyone. I have been doing pretty good. I recently ended up in the ER from severe nausea and stomach pain. I was dehydrated and had a gut impaction. I was so sick I thought I was going to need surgery that day. But as soon as the gave me fluids and a shot of zofran, I felt immediately better. I was so sick I realized I had to get serious.

                          I was finally fed up with my eating habits. Iím eating pretty clean, but was still having junk or eating out here and there. Let me tell you, even that little bit of cake or that one bowl of pasta ruins everything for me. Iím realizing that now. Because I could eat 90% clean and feel good. But once I decided to eat 100% Whole Foods, whole grains, less meat, avoid anything that agitates my gut....the jump in quality of life from eating 90% good to 100% good is exponential. Itís shocking how much that 10% was making me sick.

                          I also decided to start working out again. I know I have to, for my gut health at a minimum. I have not skipped a day training yet. I have not missed a good meal yet..and I wonít.

                          I had had to stop the doxy for 3 days, just to get my gut settled and less inflamed. My eyes got a little scratch from that. So when I reinstated, I decided to try a lower dose, 100mg instead of 200mg and itís extremely effective. My eyes got better again pretty fast once I started back in 100mg. Iím going to try and push it down to 50mg. This is what Jain suggested to me. But I wanted the most aggressive approach, however, Iím becoming less reliant on drugs due to the cpap and now the diet/training. To be fair, when I was really bad, I couldnít eat or train right. Because when I tried, I wasnít getting much benefit. Now that Iím managed well, these little changes are making a huge difference. Iím becoming less reliant on the drugs now. I can feel it. Iíve only been eating clean for 8 days. So letís see what another month on the cpap and teaming/eating wi do.

                          Oh, because of the food/training my sleep is exponentially better. I lay down, I barely move and I sleep trough the night. Iím feeling these effects immediately. Itís like my body was starved for activity and good food.

                          My mental state is so much better. Im really for the first time in 13 months, happy to be here and happy about the future. Iím still not taking the medication, and glad I havenít yet. Itís still an option, but mentally Iím so much better, that just turned around 3 days ago. My thoughts started turning way more positive. I was happy to think about growing old and getting sick with my wife. I was finally not scared of it. And hey, that can change, but Iím saying this because itís the firs 3 days in a row things havenít set me off into a horrible headspace. Iím happier...laughing more. Getting into new hobbies, I started collecting custom knives and flashlights (I know, super weird lol). Getting back into old Hobbes I used to love I thought Iíd never enjoy doing again. Things are turning around. Theyíre not perfect. This right eye is still a bit more painful than the left. Iím sure we can possibly get it better, so Iíll bring it up February 2nd.

                          So yeah, Iím sitting here, for the first time in over a year feeling like myself again. I donít feel pitiful or weak. I donít feel like, I canít handle this anymore. I have really good care, I can finally relax it feels like. And to be fair, my eyes are pretty normal. No more taping at night, no more eye drops (except serum), still on the steroids, heparin and doxy...but I think we will pull back on those in the coming months.

                          I hope everyone is doing well. Iím very happy I can post this and Iíll update you if anything changes, good or bad. Iím gonma snag my daughter, she just woke up. Take care!

                          Comment


                          • Originally posted by Dowork123 View Post
                            UPDATE

                            Hello everyone, hope the new year is being good to everyone. I have been doing pretty good. I recently ended up in the ER from severe nausea and stomach pain. I was dehydrated and had a gut impaction. I was so sick I thought I was going to need surgery that day. But as soon as the gave me fluids and a shot of zofran, I felt immediately better. I was so sick I realized I had to get serious.

                            I was finally fed up with my eating habits. Iím eating pretty clean, but was still having junk or eating out here and there. Let me tell you, even that little bit of cake or that one bowl of pasta ruins everything for me. Iím realizing that now. Because I could eat 90% clean and feel good. But once I decided to eat 100% Whole Foods, whole grains, less meat, avoid anything that agitates my gut....the jump in quality of life from eating 90% good to 100% good is exponential. Itís shocking how much that 10% was making me sick.

                            I also decided to start working out again. I know I have to, for my gut health at a minimum. I have not skipped a day training yet. I have not missed a good meal yet..and I wonít.

                            I had had to stop the doxy for 3 days, just to get my gut settled and less inflamed. My eyes got a little scratch from that. So when I reinstated, I decided to try a lower dose, 100mg instead of 200mg and itís extremely effective. My eyes got better again pretty fast once I started back in 100mg. Iím going to try and push it down to 50mg. This is what Jain suggested to me. But I wanted the most aggressive approach, however, Iím becoming less reliant on drugs due to the cpap and now the diet/training. To be fair, when I was really bad, I couldnít eat or train right. Because when I tried, I wasnít getting much benefit. Now that Iím managed well, these little changes are making a huge difference. Iím becoming less reliant on the drugs now. I can feel it. Iíve only been eating clean for 8 days. So letís see what another month on the cpap and teaming/eating wi do.

                            Oh, because of the food/training my sleep is exponentially better. I lay down, I barely move and I sleep trough the night. Iím feeling these effects immediately. Itís like my body was starved for activity and good food.

                            My mental state is so much better. Im really for the first time in 13 months, happy to be here and happy about the future. Iím still not taking the medication, and glad I havenít yet. Itís still an option, but mentally Iím so much better, that just turned around 3 days ago. My thoughts started turning way more positive. I was happy to think about growing old and getting sick with my wife. I was finally not scared of it. And hey, that can change, but Iím saying this because itís the firs 3 days in a row things havenít set me off into a horrible headspace. Iím happier...laughing more. Getting into new hobbies, I started collecting custom knives and flashlights (I know, super weird lol). Getting back into old Hobbes I used to love I thought Iíd never enjoy doing again. Things are turning around. Theyíre not perfect. This right eye is still a bit more painful than the left. Iím sure we can possibly get it better, so Iíll bring it up February 2nd.

                            So yeah, Iím sitting here, for the first time in over a year feeling like myself again. I donít feel pitiful or weak. I donít feel like, I canít handle this anymore. I have really good care, I can finally relax it feels like. And to be fair, my eyes are pretty normal. No more taping at night, no more eye drops (except serum), still on the steroids, heparin and doxy...but I think we will pull back on those in the coming months.

                            I hope everyone is doing well. Iím very happy I can post this and Iíll update you if anything changes, good or bad. Iím gonma snag my daughter, she just woke up. Take care!
                            This makes me so happy. Thanks for sharing, I wish for even further improvement for you which Iím sure will come! I appreciate your attitude for living and enjoying the present and also accepting and hoping for the future. This is awesome!

                            Comment


                            • Originally posted by Topher3 View Post

                              This makes me so happy. Thanks for sharing, I wish for even further improvement for you which Iím sure will come! I appreciate your attitude for living and enjoying the present and also accepting and hoping for the future. This is awesome!
                              Thanks, but to be honest, Iím not sure I can take credit for the change. I believe it was a chemical shift. I guess I feel guilty accepting the compliment because Iím not sure I made this happen. That said, itís good to be happy about life again, regardless of how I got here. One thing is certain, I MUST take care of my basic needs or I will fall apart. Food, water, sleep...all crucial to my mental health. I have to be unflinchingly rigid about these things too.

                              As as for improvement, I agree, I think I can get better also. The literature that showed a reversal in lid laxity was at a 4 year follow up after initiating cpap. So I could reverse the floppy eyelid, it is possible to cure my disease even after being told itís not possible. So Iím going to be on top of EVERYTHING for the next 4 years. I will not eat any junk, Iíll train regularly, Iíve done it for a two year stretch. I can do 4 years of perfection. I came to this site weighing 247 lbs, Iím now 202 lbs. I have veins from my upper thighs to my armpits. I have almost no fat left on my body.

                              Iím hoping once I come off the Xanax and opiates completely, Iíll be even better. Iím taking 70% of a .25mg Xanax pill per day. Iíll be done with those in February thank god! My opiates I dropped from 150mg to 100mg this week and feel great. Iílol be dropping the oxycodone regularly now as well. So thereís clearly a lot of room for improvement here. Iíll keep everyone posted as the years go on. Iím finally ready to write my dry eye story. I had to be right before I could write that. I think now my story could give people some much needed hope now, in a world where doctors verbally condemn you to a life of incurable suffering.

                              Anyway, I want to add this. I had my first bad night wit my cpap. I see my doctor today so thatís great I can address the issue. I think I had some air blow back in my eyes when I flipped to my side. Even with that, Iím still doing great. So itís nice to have some consistency. Lets see how things progress, finally excited for that!

                              Comment


                              • Dowork123 , Iím so glad youíve had a great 3-4 straight days mentally! That definitely shows promise and more consistency to come. I too find a good diet and exercise is key for making my eyes and mind be at its best. I think the body craves and needs those wholesome inputs. Especially I found gluten, sugar and dairy makes my eyes feel a lot worse. Iíve tested each of those to the extreme, and could tell my eyes were way more severely dry after consuming those things. Iím not as sensitive as you are right now where eating 10% bad affects you, but it used to affect me like that. Now that Iíve been better for awhile, that 10-20% does not seem to be an issue.

                                I look forward to reading your story in Rebecca and Aidanís Dry Eye Stories!

                                Comment

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