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  • Dowork123 I have multiple retina issues that are an even more serious condition than my dry eyes, if you can even imagine that. When I first found out about my retina problems when I was getting all the exams and tests for dry eyes, it really hit me hard too, I honestly thought like you, how much more can I possibly deal with? However, Iíve been taking a PF prescription eye drop for the last several years that seems to manage the eye pressure and other retina issues, and I regularly see a retina specialist to monitor my condition. Thereís also certain supplements and diet that might help the condition from getting worse. I just saw a couple of my eye specialists this past week, and they both said to keep doing what Iím doing because things with my retina have remained stable. Yours might even just be a temporary condition because of the steroid eye drops, but even if itís not, it likely can be managed.

    Let me know what the retina specialist says after you see him/her next week. Iíve had to get very familiar with the retina and treatment options (at least for my retina issues) just as much as for my cornea and dry eyes.
    Last edited by Hokucat; 02-Feb-2019, 17:05.

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    • Originally posted by Hokucat View Post
      Dowork123 I have multiple retina issues that are an even more serious condition than my dry eyes, if you can even imagine that. When I first found out about my retina problems when I was getting all the exams and tests for dry eyes, it really hit me hard too, I honestly thought like you, how much more can I possibly deal with? However, Iíve been taking a PF prescription eye drop for the last several years that seems to manage the eye pressure and other retina issues, and I regularly see a retina specialist to monitor my condition. Thereís also certain supplements and diet that might help the condition from getting worse. I just saw a couple of my eye specialists this past week, and they both said to keep doing what Iím doing because things with my retina have remained stable. Yours might even just be a temporary condition because of the steroid eye drops, but even if itís not, it likely can be managed.

      Let me know what the retina specialist says after you see him/her next week. Iíve had to get very familiar with the retina and treatment options (at least for my retina issues) just as much as for my cornea and dry eyes.
      Thank you.

      Comment


      • Just having a rough time guys. No need to go into real detail, anyone that knows me, knows how I feel anyway. I canít help but think this happened to me on purpose. And I donít believe in god.so Iíve been having these almost breaks from reality. Where I feel Iím being watched by some other being. An alien perhaps, thatís just twisting the knobs on my life. Just ****ing with me. I canít believe this is happening on purpose, thatís seems insane, yet I also believe something is doing this to me, which contradicts the first part and is equally insane. Itís very very odd. I do not understand how people live like this. I know there are other people with eye problems, why arenít they all here on this site? Something common brought us all here. The severity of the disease, the inability to cope, access to a computer. I have no clue but I feel like we are all special. Either that or weíre not at all...I guess some people just handle things differently. I can reflate to a lot of you here of course. I want to know how people moved on. People like tommyboy who had the hardest time here. His wife said heís good now. Enjoying life again. I donít understand why weíre kot there yet. Maybe itís more time, maybe itís never. I have a hard time with forever. I have panic attacks about it.

        Im off the Xanax 100% and have been of got a few days. But yesterday, I doubled my opiate dosage because I just needed to be doped out. Today Iíll do the same because I cannot live with the thoughts. Then Iíll do like I akways do and cut the dose in half, suffer and repeat. I want off the opiates but without stability that just wonít be possible.

        Im spending so much money. Iím definitely manic and still slightly depressed. I spent 1000 dollars a day for the last 3 date just buying bullshit. Iím hoping it will make me happy...but it doesnít. Yet I canít stop. Itís like buying and researching things other than my eyes has become an escape. Im very sad. I have no clue when the spending will end. I tell myself donít buy anything today and then I start researching things to buy. I just donít know what to do. I am trying to cram years of my life into a few months I guess. I just know my life is pretty much over. Thereís no way I see having even a decent life.

        Same with everyone here. I felt helpful before, I wanted to engage. Now I do not. For so many reasons. One being I feel like I need to censor what I say. Thatís been happening in almost every site I visit. So the once free and open space to vent has become a trigger warning zone. Listen, I get it, life isnít awesome. Certain things on here may bother you THEN PUT DOWN THE PHONE/COMPUTER. You are the one reading it. Itís not like someone is in a room shouting at you and you canít leave. Stop partaking in your own abuse and put the phone down. But compelling other people to speak a certain way because you feel uncomfortable is some really weak shit. I watch tv all day and get depressed at people having a good time. Should I call the network and ask they donít run those shows? No, I turn off the ****ing tv. So thereís my rant for that. Because all my safe spaces, were spaces where anyone could say anything. Thatís disappearing fast. Iím done with that rant, but I had to say it. The other reasons I donít engage are that I canít help anyone anymore really. I can only do so much and I feel helpless now trying to help others. I donít know how to help now. Maybe I donít need to help maybe Iím just here to support. I donít know my role. Maybe I shouldnít have one. Iím just confused guys.

        Anyway, good luck. Hope you are doing better than me. And Iím not even that bad...just possible blindness no biggie. My therapist said this isnít the wurst thing thatís going to happen to you, heís right. But that doesnít change the fact that this is still insanely horrible.

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        • On a positive note. I didnít need steroids in the left eye yesterday. Iím going to take them today regardless in the left eye to follow the proper taper and avoid a rebound. But I coukd probanky do twice a week in the left eye so thatís good. I may skip the right eye today and see if I can take that one to every other day also. My glaucoma drops hurt so bad so Iím gonna start a thread on that.

          Comment


          • Originally posted by Dowork123 View Post
            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.
            Yeah, I think people with majorly debilitating dry-eye related problems are fairly uncommon... this makes it very challenging to get good care since most doctors don't have much experience treating patients like us.

            Originally posted by Dowork123 View Post
            I go from feeling great to totally defeated again. I just want to be done with this because I seriously canít keep doing this.
            It's so damn hard to go through this mental roller coaster.

            And look, I don't know if this will help... but I'm going to say it on the off chance that it does.

            As I think you may know, I'm trying to learn to meditate. Because for now, I've pretty much exhausted all medical treatments where I am, and can't try new ones until I return to Canada in June. But I haven't exhausted all options for dealing with the mental pain/stress/depression side of this. And there's not question that the physical response of our bodies to all this mental angst isn't helping us... so it makes sense to do whatever we can to soothe the angst, to calm things down.

            I don't know if you have tried meditation or not... I'm on day 35 of daily meditation right now. I am often not "good" at it... my mind wanders a lot. However, I am getting better at it the more I do it. And the trend is that it leaves me with a feeling of greater mental peace... it eases the mental stress I go through. This helps me get better quality sleep, and there is no question that my eyes improve as a result. Obviously it's no miracle cure, but it can make the difference between my eyes being intolerable vs. needing to be babied but allowing me to get enjoyment out of life. In other words, I feel like it's buying me time... allowing me to hang on, allowing me to feel mentally stronger... until the day comes when I might find an even better solution for my actual eye problems.

            So I guess what I'm trying to say is, it really sucks to be in a dark place mentally. There is science showing that when we are in such a dark place, our bodies have a physical reaction to it that isn't doing us any good.

            So may I ask you to try meditation? I know that sounds crazy, like a longshot... like woo woo waste-of-time nonsense maybe. And I've got to tell you, I've got to be one of the least woo-woo, least spiritual people there is.

            But yet... meditation - medi-fricking-tation of all things... somehow is helping me.

            And maybe it will help you get through this with greater ease, just as it's helping me.

            This is the thread where I talk about the app I'm using to learn how to meditate: http://forum.dryeyezone.com/forum/ar...help-right-now

            And here is a direct link to the app: https://www.headspace.com/

            Originally posted by Dowork123 View Post
            I do not understand how people live like this. I know there are other people with eye problems, why arenít they all here on this site? Something common brought us all here. The severity of the disease, the inability to cope, access to a computer. I have no clue but I feel like we are all special.
            I honestly don't think there are large numbers of people (percentage-wise) who suffer from truly debilitating dry-eye-related problems.

            Originally posted by Dowork123 View Post
            I want to know how people moved on. People like tommyboy who had the hardest time here. His wife said heís good now. Enjoying life again.
            I think it's a combination of finding mental calm, along with finding the right combination of treatments for the eye issues themselves. I think we all need to deal with both aspects of this condition in order to move on with life.

            Originally posted by Dowork123 View Post
            I have a hard time with forever. I have panic attacks about it.
            Yeah, just try not to go there... I mean, I'm sure you already try... but just keep trying and don't give up... eventually you'll get much better at not worrying about forever, and get better at just dealing with right now.

            Originally posted by Dowork123 View Post
            Im spending so much money. Iím definitely manic and still slightly depressed. I spent 1000 dollars a day for the last 3 date just buying bullshit. Iím hoping it will make me happy...but it doesnít. Yet I canít stop.
            May I humbly suggest you spend some of that money on a 12-month subscription to Headspace, and then set aside at least 10 minutes a day to practice the exercises in it, and do this without fail for the next few months? :-) Or hell, go all in and do several 10-minute sessions of meditation each day.

            I figure compared to 1k a day, Headspace is dirt cheap... and has better odds of helping you. Worst case, you waste 10 minutes of your time a day. which is really nothing in the big scheme of things. Best case, it helps you a lot. Sounds like a decent deal to me.

            You're doing the therapy and medication thing for the mental side of this... why not add meditation... no chance of harm, and a decent chance of helping you.

            If for no other reason, do it for your wife and kids. Because if it helps soothe you, if it helps calm you, not only will you benefit, but so will your wife and kids. They need you. It's that simple. So keep up the good fight, okay?

            Reading your posts, you're already doing so many good things to tip the odds in your favour... maybe this will help tip those odds in the direction you need.

            Originally posted by Dowork123 View Post
            Itís like buying and researching things other than my eyes has become an escape.
            We all need an escape from the things that bring us down - in our case, our crazy eye problems. Just do your best to find escapes that won't make you go broke hehe

            And hey, spending time researching things as an escape sounds like a perfectly reasonable escape strategy to me. It takes your mind off your troubles, and you learn something about whatever you're researching. Sounds like a win-win.

            Originally posted by Dowork123 View Post
            Thereís no way I see having even a decent life.
            It's a trick of your brain doing this.

            The fact is, you don't know what the future brings.

            The only thing you know for sure is what's right now.

            And if right now is really sucky, it's hard to imagine how it'll get better.

            But it can get better... you just have to wait this out... ride it out... deal with making right now manageable, and forbid yourself from worrying about what's coming... odds are the worry will turn out to be a waste of time because most of the things you worry about won't happen anyways.

            Take reasonable steps to put yourself in as good a position as you can... do what's within your power to minimize the harm this eye condition can do... do what's within your power right now to stack the deck as much as possible in your favour... then just wait it out. Deal with the present after that, and see where things go.

            Originally posted by Dowork123 View Post
            Same with everyone here. I felt helpful before, I wanted to engage. Now I do not. For so many reasons. One being I feel like I need to censor what I say. Thatís been happening in almost every site I visit. So the once free and open space to vent has become a trigger warning zone. Listen, I get it, life isnít awesome.

            Certain things on here may bother you THEN PUT DOWN THE PHONE/COMPUTER.
            I agree with this... no-one is forced to read anything. If anyone finds someone here is struggling with things they can't handle right now, just avoid reading that person's posts. I've done this many times over the years when my state of mind wasn't strong enough to handle reading certain things here... and other times, reading those very things gave me comfort because I felt less alone.

            I think we all have to take responsibility for what we do or don't read here.

            The mental side of this is hard, and we all could use someone to talk to, to vent to... my hope would be that this forum can serve as that place for those who need to do so.

            Originally posted by Dowork123 View Post
            I donít know how to help now. Maybe I donít need to help maybe Iím just here to support. I donít know my role. Maybe I shouldnít have one. Iím just confused guys.
            Just try to go with the flow. Do what you can, when you can. And try not to worry about the rest.

            Personally, I believe many people coming and going from this forum will benefit from your story... all that you've posted here about what did and didn't work, the ups and downs... there are lots of useful nuggets in there that will help others reading about it.

            Anyhow, sending good vibes your way... hang in there!
            Last edited by SAAG; 04-Feb-2019, 16:20.
            Yet another post-Lasik (2005)...
            Anyone have a time machine so I can go back and undo this mess?

            Comment


            • Dowork123 Iím really sorry to hear how youíre feeling at the moment, Iíve been following your story and this is another bump in your road for now. I remember in December you were in a bad place and really upset and I remember saying ďyou truly never know whatís around the cornerĒ and in two weeks time your life completely changed, everything was improving with the cpap machine and your eyes were feeling better. The main thing Iím trying to get to is that your whole life changed in a matter of weeks, you went from suicidal to planning your future and enjoying your life. How youíre feeling could very well be temporary. I remember telling you to not worry about the future and try and enjoy the now because everything else is irrelevant and you deserve to feel good and live in that joy.

              The Brain can be very cruel, dealing with your own physical problems and then the mental problems on top of it is more than a lot of people can bare. So itís important for you to try and control what you can even if thatís mentally challenging your thoughts and stating a positive outcome from this even if you donít believe it. Because once youíve stated that, your brain has knowledge of that positive outcome. These glaucoma drops may very well drop your pressures down into normal range and when you go for that test your retina may be fine. And you can go back to living life comfortably. This is a REAL POSSIBILITY.

              no, Youíre not being punished, no you donít deserve this somehow, you have a debilitating disease and youíre struggling to cope with it right now, period thatís it, no more. Suffering is a part of life ďoh but barely anyone else has to deal with dry eyes, my doctor only has 3 people in total with this problem out of hundreds!Ē
              Ēyeah, well, thereís millions of people who are suffering from auto immune diseases their whole entire lives struggling, people who die of cancer in the childhood yearsĒ I understand where youíre coming from but again itís all perception when youíre in a bad place mentally. We are not alone as much as we think, even if thereís not many people dealing with this there a 100ís of millions suffering from something. This unfortunately is life and we have to make the best of what weíve got, weíve got plenty of years to be dead after life so letís try and find ways to make this one life really count.

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              • Topher3 Yeah, I know youíre right and I appreciate you for saying it. I decided on my own to push my steroids to every other day. To my shock, Iím doing really good. So Iím really happy I tried to change the dosing. Thatís another issue. A doctor cannot, in real time, adjust my meds the way I can. I probably could have pulled back in the steroids about two weeks ago. Thatís when I started sleeping 6+ hours a night. So the sleep is a huge factor for my eyes, clearly. Iím hoping the drops work in conjunction with pulling back the dosing on the steroids. Iím actually going today to see the glaucoma specialist. I called about the drops hurting so bad and they asked that I come in tomorrow in case the drops needed to be changed. So at 12:30 today Iíll know more. It would be awesome if my pressure already dropped. Letís hope for that. Honestly being able to cut the steroids was a huge victory for me. Iíve been so dependent on them. I have only forgotten to take my steroids only one time during this treatment. When I did, at about 5pm my right eye was just shutting on itís iwn from the pain. So Iíve come a long way from that which is nice. I decided to offset the steroids im raising my doxy to 250mg. I just started that yesterday. I figure the doxy is safer than the steroids at this point. Just trying to keep this conjunctivitis under control. Honestly, I could probably completely stop the steroids in the left eye. So Iíll ask about that. Maybe save one of my eyes at least.

                Thanks for coming in here and talking to me. I like when youíre aggressive and just tell me what the **** is up. I respond well to that for some reason. Maybe itís the honesty.

                Comment


                • Originally posted by Dowork123 View Post
                  Topher3 Yeah, I know youíre right and I appreciate you for saying it. I decided on my own to push my steroids to every other day. To my shock, Iím doing really good. So Iím really happy I tried to change the dosing. Thatís another issue. A doctor cannot, in real time, adjust my meds the way I can. I probably could have pulled back in the steroids about two weeks ago. Thatís when I started sleeping 6+ hours a night. So the sleep is a huge factor for my eyes, clearly. Iím hoping the drops work in conjunction with pulling back the dosing on the steroids. Iím actually going today to see the glaucoma specialist. I called about the drops hurting so bad and they asked that I come in tomorrow in case the drops needed to be changed. So at 12:30 today Iíll know more. It would be awesome if my pressure already dropped. Letís hope for that. Honestly being able to cut the steroids was a huge victory for me. Iíve been so dependent on them. I have only forgotten to take my steroids only one time during this treatment. When I did, at about 5pm my right eye was just shutting on itís iwn from the pain. So Iíve come a long way from that which is nice. I decided to offset the steroids im raising my doxy to 250mg. I just started that yesterday. I figure the doxy is safer than the steroids at this point. Just trying to keep this conjunctivitis under control. Honestly, I could probably completely stop the steroids in the left eye. So Iíll ask about that. Maybe save one of my eyes at least.

                  Thanks for coming in here and talking to me. I like when youíre aggressive and just tell me what the **** is up. I respond well to that for some reason. Maybe itís the honesty.
                  Iím always here to talk, I do come off a bit stern but thatís just how I am and it comes from my honest truth like you said. I always have to talk to myself like that too. I whole heartedly believe your eye pressure is gonna drop and that your retina is going to be fine. Youíve come back from hell, youíre going to do it again. Good luck mate!

                  Comment


                  • Originally posted by Topher3 View Post

                    Iím always here to talk, I do come off a bit stern but thatís just how I am and it comes from my honest truth like you said. I always have to talk to myself like that too. I whole heartedly believe your eye pressure is gonna drop and that your retina is going to be fine. Youíve come back from hell, youíre going to do it again. Good luck mate!
                    My pressure is 8 and 9. Dropped so hard the woman was like, why did they send you here. Very happy about that. Curious what the doc will say. Thereís one person in front of me.

                    SAAG Thank you, Iíll reply fully later. I may buy a meditation app. It was just so hard before. Maybe now that Iím feeling better I can actually meditate.

                    Comment


                    • Originally posted by Dowork123 View Post

                      My pressure is 8 and 9. Dropped so hard the woman was like, why did they send you here. Very happy about that. Curious what the doc will say. Thereís one person in front of me.

                      SAAG Thank you, Iíll reply fully later. I may buy a meditation app. It was just so hard before. Maybe now that Iím feeling better I can actually meditate.
                      Wooohooo! *winkface*

                      let us know how it went!

                      Comment


                      • Originally posted by Dowork123 View Post

                        My pressure is 8 and 9. Dropped so hard the woman was like, why did they send you here.
                        OMG, I'm so very happy for you! My heart sunk when you said you had to start glaucoma drops because after all you've been through I was like "!#@$@!#$ not another thing for him to have to deal with :-( "

                        Originally posted by Dowork123 View Post
                        Thank you, Iíll reply fully later. I may buy a meditation app. It was just so hard before. Maybe now that Iím feeling better I can actually meditate.
                        yeah, meditation doesn't come naturally to me at all... my mind is always busy, always racing from one thing to the next. This is good when it comes to getting things done, but bad when it comes to worrying about things I can't change. I have a hard time sitting still.

                        Anyways, I meditate lying down ... I don't like sitting up to do it because I get distracted by my neck feeling stiff, or my back feeling stiff, or my head feeling too heavy... stupid things like that lol. Anyways, to avoid that problem, I meditate lying down on the beach, lying down on a secluded floating dock at the harbour nearby, lying down on a flat rocky outcropping at the ocean, lying down where I won't be interrupted at home. It's been good.

                        I have no doubt that there will be times when one is too far into a deep mental pit of crap that one won't be able to get into the zone to meditate effectively.

                        But... there is some good science behind it, so I am optimistic that if one keeps trying, eventually, the mind will stop fighting it, the mind will give into it, and the act of meditation can be soothing (and a good add-on to whatever other treatments one is using for the mental side of things).

                        When I'm super worked up, all I can do with half-decent focus are the basic ones because they are pretty simple... but despite their simplicity, they do calm me. I also do the 3-minute daily meditation ... it's different every day... but I do it because I want to hear the guy's perspective on whatever the topic of the day is.

                        And on better days, I like the stress ones - and when I can really get into the zone for the visualization exercise in the stress pack I feel almost euphoric... it's so weird, but cool. Doesn't happen most of the time, but when it does, it's very welcome after all the mental crap I fight against.

                        Anyways, if anyone had asked me back when this first started if I'd be the type of person to meditate, I'd say "hell no... too woo woo for me... not my thing". Anyways, maybe you'll find some added peace with it, too, to get you through all this with fewer mental ups and downs (or at the very least, maybe less intense ups and downs). Fingers crossed for you... and I'm looking forward to hearing what the doctor said about your awesome pressure results! :-)
                        Yet another post-Lasik (2005)...
                        Anyone have a time machine so I can go back and undo this mess?

                        Comment


                        • SAAG Well, I have glaucoma. I have a ridge the doctor said. Which makes me prone to fluctuations in pressure. No clue what that means yet. But itís a genetic/structural thing. I also have a non typical nerve thatís thinning. So she said we cant even compare me to a normal nerve because mine looks so different. They also gave me an abrasion in my left eye checking my corneal thickness. That woman was unprofessional from that start. Next time Iím only allowing oressurevto be.cgecked with that ring. Not the pen. So mad about that and sad about the glaucoma ****kkkkkk

                          i canít see right Iím so pissed. Came in with 20/15 vision both eyes now I canít read anything with my left. She ****ed me up bad.

                          Comment


                          • Originally posted by Dowork123 View Post
                            SAAG Well, I have glaucoma. I have a ridge the doctor said. Which makes me prone to fluctuations in pressure. No clue what that means yet. But itís a genetic/structural thing. I also have a non typical nerve thatís thinning. So she said we cant even compare me to a normal nerve because mine looks so different. They also gave me an abrasion in my left eye checking my corneal thickness. That woman was unprofessional from that start. Next time Iím only allowing oressurevto be.cgecked with that ring. Not the pen. So mad about that and sad about the glaucoma ****kkkkkk

                            i canít see right Iím so pissed. Came in with 20/15 vision both eyes now I canít read anything with my left. She ****ed me up bad.
                            I am so sorry to hear that. Hope things get better for you. Hang in there

                            Comment


                            • Dowork123 I'm so sorry that things went badly at the appointment... that stinks And an abrasion to cap it all off? Super frustrating, and sounds painful.

                              I wonder if the glaucoma has a chance to go away if you are able to wean off the steroid drops? Does the doctor know the answer to that? Or is it too uncommon for this to happen and they don't know?

                              Anyways, I wish I had something better to say, other than the obvious, which is that this will pass. It really sucks, but it will pass.

                              The way I see it, you were doing really good for a bit before this. That's a positive sign of what's possible. Just have to ride out this roller coaster of events while you wait to get back to that stage. Hang in there, and be good to yourself.
                              Yet another post-Lasik (2005)...
                              Anyone have a time machine so I can go back and undo this mess?

                              Comment


                              • Originally posted by Dowork123 View Post

                                My pressure is 8 and 9. Dropped so hard the woman was like, why did they send you here. Very happy about that. Curious what the doc will say. Thereís one person in front of me.
                                This is something insanely remarkable! You have good genetics in this regard. I can't imagine IOP dropping from 25 to 8/9 just by weaning off steroids in such a short time. I think you reduced to dosage from once everyday to once every alternate day. Right?

                                If that's working for you at least you have time to explore other options. I really hope the cpap machine reverses the laxity of your lids and you don't need the surgery. I am really happy that you have something positive to hold on to at the moment. Keeping my fingers crossed. Don't want to spoil the touchwood!

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