Announcement

Collapse
No announcement yet.

Every symptom completely gone for 6 hours

Collapse
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • dano6533@gmail.com Hokucat

    Thank you both, really appreciate it. Hope youíre still doing well with the sclerals Dano. Iíll be checking your thread soon.

    Comment


    • UPDATE.

      Pressure is up to 25. Optic nerve still looking great. Iím not depressed about it, but it does suck. Have a great day everyone!

      Comment


      • Originally posted by Dowork123 View Post
        UPDATE.

        Pressure is up to 25. Optic nerve still looking great. Iím not depressed about it, but it does suck. Have a great day everyone!
        If you are still on steriods, I would high caution you to consider stopping. Normal eye pressure is 12-22 , you are out of range. Steriods can increase IOP and cause glacoma , perhaps this is the initial effects.

        Comment


        • UPDATE

          My eyes are still doing very good. I see my doc on the 1st of February. Not sure what weíre going to do about the pressure...but Iím less worried about it. Probably cause I feel better.

          Im almost off the Xanax. Thatís been such a long road. But Iíll be off on a week. Very excited about that. The doses Iím taking are like little crumbs

          so things are still trending positive. Iíll keep you posted after February 1st to see which path we take. Iím curious if heís going to drop the steroids to every other day. Or keep me going on once a day. Iíll tell you that this drug therapy has me feeling so good. Iím pretty normal.

          Oh, I know you guys may remember me talking about why my left eye with the debridement has less pain. I think I have a theory that FINALLY makes sense. The left eye has an island, a thicker part of the cornea. I believe thatís pulling the eyelid and making it more taut. The right eye however doesnít have that raised section on the cornea. So the lid is more ďfloppyĒ. This is the closeest Iíve come to an explainatiom that fits AND makes sense. Now what does that do for me. Well I guess it tells me eyelid surgery coukd help. Tells me that I donít have nerve damage (clearly if Iím responding to this treatment). So I guess not much but Iíd like to know what causing all this.

          Comment


          • UPDATE.

            Its be becoming apparent that when I get 6-7 hours of sleep with my cpap on, my eyes feel very very good. Even sleeping in my side again. The eyes feel very good. Iím not waking up with pinching, sore eyelids. No lie, forgot to take my steroids yesterday. Thatís HUGE! Today, same thing. I may try to start dosing every 36 hours, see if I can get away with less. However, last time I tried that with the doxy, dropped from 200mg to 100mg after the stomach issue I had, I felt it. Same with around the lid cleansing. Iím two days, I felt it. So Iím hoping this doesnít happen with the steroids. But if it does, so be it. Iíll go back to every day. But Iíd like to try and see if I can pull back a bit.

            That said, on this current drug therapy, as long as Iím 100% on top of my treatment, Iím pretty much normal. I mean, like I was before the injury. Iím just a tad bit worse than that, but not much. If I slack on my hot compress and wait say 6-8 hours to do it, the inflammation comes back and doing the compress doesnít fix it immediately. Takes a few more hours to level back out. So I MUST stay on top of my drops, compress and food. But when I do, Iím me again. So Iím ok with it at this point. Itís taken so long to get here.

            Oh, I am officially of Xanax today. I think my psychiatrist might not have believed I was tapering as well as I was. Because he said to me, thatís great, you should really be proud of yourself, most people canít do it. Maybe Iím reading into that too much. But yeah, Iím proud of myself for that. Itís the most addictive and difficult drug to stop that Iíve ever used...and Iím on OxyContin right now. I will quit the opiates exponentially faster after I stabilize fully from the Xanax. I can just cut them way faster because thereís no fear of seizure or death like with Xanax. Just pain, and I can deal with controlled pain. Pain isnít my problem, it was the lack of control and fear it would never stop that really drove me nuts, the pain is horrible too donít get me wrong, but the added emotional stuff made it so much worse.

            So things have swung in such a positive direction for me im just elated. I look absolutely amazing right now. No lie, this may be the best Iíve ever looked at 200lbs. Iím lifting weight consistently now. I havenít missed a workout in 3 weeks. Same with my food. Had a few candy bars, exactly 6 Heath bars, but other than that, perfect diet. I have veins in my stomach now. I just look nasty again and itís really helping my self esteem. I canít express how much the sleep apnea was killing my life.

            Crazy too, I found out the a friends brother has Ehrler danlos which is a connective tissue disease. I now about this disease because people with this disease get floppy eyelids too. So I asked if he snores, he said really really bad, heís 28. So I let him know, go to the damn doctor man. Please donít end up like me. So I hope that pushes him to get some treatment. His apnea is worse than mine. I believe I has a soft tissue disorder as well. I genuinely believe part of this is genetic. I think thatís why I present with those folds of fingerprints in the cornea. Itís redundant tissue being latex down. Also why people suspected ebmd, they thought they were seeing fingerprints but it was an endothelial change associated with FES. Anyway, just an update, hopefully they stay positive. Take care.

            Comment


            • Alright ladies and gents, I had an attack in my colon again today. Iím speculating at this point, but I think I have diverticulitis. I wonít self diagnose anymore cause god knows I have no clue whatís going on. But it rubs in my family and seems to fit the bill. Instant, very intense pain in lower abdomen. Chills, shaking, nausea, constipation. Out of nowhere. I look up the disease and it says there are sacs in the colon that bulge out and then get inflamed. Those bulges occur due to weak spots in the colon. Almost like my colon is lax just like my lids, just like my throat. Again, pure speculation but I have to see a dr about this now. Itís bevoming a serious problem. Iíll keep you all posted. I believe whatís happening to me is due to a genetic defect. Iíll jeep you posted, feel so sick right now.

              Comment


              • Dowork123 , hope you get better soon. Am glad at least you have been consistently doing well with your eyes, thanks for that update...you are very determined and am sure that has helped.

                Comment


                • Originally posted by Hokucat View Post
                  Dowork123 , hope you get better soon. Am glad at least you have been consistently doing well with your eyes, thanks for that update...you are very determined and am sure that has helped.
                  Thanks, yeah, Iím doing better now. But itís clear I need to address this. Man I just never thought Iíd be here. You know...just crazy how things are morphing for me over here. But to be honest, these things have been problems for years. Itís just now that they are tipping into serious dysfunction. I would like to be better again all around. Mentally Iím not as distraught about it thank god.

                  Probably because Iím sleeping better with my cpap and of course my eyes are cruising now. Iíve jist noticed sone weird behavior in myself. Iíve spent over 7k on custom knives. Iíve always loved knives since I was a kid. Since Iíve fekt better, I bought clothes and stuff for myself. But I decided to fulfill a lifelong fantasy of having a custom knife collection. When I was young, I used to watch qvc or home shopping network when the guys woukd sell knives. I woukd stay up at 2-3am watching these guys talk about knives. Never ordered them, I was a child, lol. But I was fascinated. I reminded buying my first balisong when I was 12 at a flea market. So now, I decided to buy every knife Iíve ever wanted. Iím not restricting myself anymore. Iím learning about knife steels, Iíve learned how to put a very sharp mirrored edge on a knife, itís givijg me a hobby now. Since Iím no longer occupying my free time reading about my eyes (hallelujah lol).

                  As soon as the weather gets better Iím buying a convertible corvette also. Iím done waiting on enjoying my life. I did that and almost lost the opportunity to enjoy it. Iím happy I can even do this stuff again. Iím just not sure how I feel about it. Part of me is guilty spending the money. But I also know itís nothing in the grand scheme of things, especially if Iím happy. I just want to be happy again ya know? Maybe Iím looking in the wrong places. I guess thankfully it doesnít matter.

                  Anyway, I finally feel like myself. Itís not perfect but Iíd like to try and get even better. My next goal is to stabilize off this Xanax and then really start to come off these opiates. Iím hoping things will get even better.

                  I will Iíll say that I can genuinely tell that when I sleep 5-6 hours minimum, that my eyes are healthier. A couple days ago I forgot to take my morning eye drops. I mean thatís HUGE to forget my meds. AND, my eyes didnít really feel that bad. I can tell the cpap therapy is helping the inflammation. I can only hope that it will reverse the condition. If not, Iím ok actually because I found a way to live now. But god it would be nice to come off some of these drugs or at least reduce them a lot. Iím actually excited to see if I get better from this cpap therapy. Well I mean my eyes get better, I am clearly wayyyyy from the cpap.

                  Hope youre doing well. Makes me happy when I see regulars coming less frequently. Makes me feel like youíre caught up in life which is a good thing.

                  Comment


                  • Dowork123 I'm so happy for you - it is fantastic that you've made such massive progress! Big congrats!!! :-)
                    Yet another post-Lasik (2005)...
                    Anyone have a time machine so I can go back and undo this mess?

                    Comment


                    • Originally posted by SAAG View Post
                      Dowork123 I'm so happy for you - it is fantastic that you've made such massive progress! Big congrats!!! :-)
                      If I get 5-8 good years before things get bad again Iíll be happy about that. Although Iím probably bring a bit optimistic there.

                      Comment


                      • Originally posted by Dowork123 View Post

                        If I get 5-8 good years before things get bad again Iíll be happy about that. Although Iím probably bring a bit optimistic there.
                        Yeah, prepare for ups and downs... but definitely enjoy every last second of the "ups" to make the most of them! And you learn a lot of good management strategies - which ones work for you - during the downs - and that means future downs likely won't last as long, and can be turned around sooner. Anyhow, it really does sound like you're going in the right direction now, and I'm sure that will continue!

                        Yet another post-Lasik (2005)...
                        Anyone have a time machine so I can go back and undo this mess?

                        Comment


                        • Dowork123 , that's funny about the knife collection, but hobbies are meant to be anything that interests us. And yes, spending your free time on that hobby versus on your eyes is so much better!

                          You are right that I am off caught up in life, as one reason I have not been as active in this forum lately. With my kids involved in school, sports, and other extracurricular activities, I can barely keep up with them and keeping things going at the house. Plus like most of us, I know it's not wise for me to overuse my eyes (as I did when reviewing my kid's college apps/essays the last few months), so have been cutting back on using the computer and texts.

                          Stay warm over there in Chicago, heard the polar vortex is causing the coldest weather in decades! I don't think that weather or having heaters on is very easy on the eyes either.

                          Comment


                          • Well I got put on glaucoma drops today. My pressure was 25, my dock was a little concerned about the optic nerve. He wants me to come back next week and see the retinal specialist. Also, to make sure that the drops are lowering my pressure.

                            Comment


                            • Originally posted by Dowork123 View Post
                              Well I got put on glaucoma drops today. My pressure was 25, my dock was a little concerned about the optic nerve. He wants me to come back next week and see the retinal specialist. Also, to make sure that the drops are lowering my pressure.
                              Hopefully the drops will do their job and lower your pressure! Fingers crossed!
                              Yet another post-Lasik (2005)...
                              Anyone have a time machine so I can go back and undo this mess?

                              Comment


                              • Originally posted by SAAG View Post

                                Hopefully the drops will do their job and lower your pressure! Fingers crossed!
                                I donít know what to say. I get comfortable with a new time frame and it changes. I asked him and his assistants how many people they treat with my condition. She said 3 including me. They get 5 new patients a week. Lately theyíve been getting more 7+. Most of them with tear fluid deficiency due to autoimmunity. Most people with floppy eyelid go to oculo plastics. I go from feeling great to totally defeated again. I just want to be done with this because I seriously canít keep doing this. I thought last week, Iím going to be ok. I knew I was lying to myself but what else can I ****ing do? The only way I can function is to not think about it. Now, I canít even do that. Almost had a full on panic attack and almost took a Xanax yesterday, but I didnít. I just canít be a human. Iím a bad human. I am close to the end of my abilities to continue doing this. Like legitimately Iím getting close to being done. I cannot have my mind filled with this all day....itís no life.

                                Comment

                                Previously entered content was automatically saved. Restore or Discard.
                                Auto-Saved
                                Smile :) Biggrin :D Wink ;) Rolleyes :rolleyes: Tongue :p Cool :cool: Redface :o Confused :confused: Eek :eek: Frown :( Mad :mad:
                                x
                                Insert: Thumbnail Small Medium Large Fullsize Remove  
                                x
                                Working...
                                X