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  • #46
    Originally posted by MGD1701 View Post
    Thanks Hokucat
    These are possible. So best is serum? Still wonder why many people use both serum and arti. tears?? These are best combination?
    Since you are allergic to everything, do you still use drops daily? Thanks!
    Hereís why, serum doesnít have any staying power. Itís not much more viscous than the saline itís compounded with. So eventually I need a thicker tear that sits on the eye better. Thatís why I switch between both. Also, I notice my eyes like a small amount of sodium. Thatís why theratears worked so well and now Iím in love with the oasis tears.

    the reason serum is so good, for me, is comfort. If my eyes burning bad and I drop serum in it, instantly relieves all the burning. Like a fire extinguisher! But for actual dryness, an artificial tear is better in most case.

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    • #47
      Thanks Dowork for sharing.
      Great that you have figured out what helped you. I still need to find better art. tears - mainly for grittiness and dryness.
      During previous dr consulation, doctor was amazed how many different brands I have tried - in fact, 4 times more - just did not bother to list all.



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      • #48
        Originally posted by MGD1701 View Post
        Thanks Dowork for sharing.
        Great that you have figured out what helped you. I still need to find better art. tears - mainly for grittiness and dryness.
        During previous dr consulation, doctor was amazed how many different brands I have tried - in fact, 4 times more - just did not bother to list all.


        Iíve tried almost everything...oasis tears and oasis tears plus are the best Iíve ever used. Not even close....they feel so good in the eye. It actually feels like my eye is drinking water. Almost all other tears have some side effect I donít like, even if they work...not the oasis though.

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        • #49
          Hey Dowork, it about getting off of the Vicodin. My son who was in a car wreck and put on opioids has had a horrific time getting off of them. I admire your determination and know that you will succeed. However, here is my advice....take it slo-o-o-o-ow, there is no rush to complete the taper. He finally has been put on a professional opioid tapering program. The first thing they do, and you will probably not need this step, is they switch the clients over to Suboxone as that is a drug that is difficult to find on the street and has a high affinity for the receptors so it is not subject to abuse. Once he was stable on that for 2 months they started the actual taper. He gets tapered about 6 percent every 2 weeks. He started the actual taper in early July and we hope to have him done by Christmas but even at that he finds it a struggle. Horrific night terrors, can't sleep, debilitating anxiety, constipation, the list goes on and on. He has to stabilize on one dose before he attempts the next step. He finds it so difficult that (at 40 years of age) we have to dose out the meds to him because he would be too tempted to make the bad stuff go away to do it on his own.

          He had been on Oxicodone a few years back and found that a cake walk to get off of compared to the stronger opioids. I wish you luck.

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          • #50
            Originally posted by farmgirl View Post
            Hey Dowork, it about getting off of the Vicodin. My son who was in a car wreck and put on opioids has had a horrific time getting off of them. I admire your determination and know that you will succeed. However, here is my advice....take it slo-o-o-o-ow, there is no rush to complete the taper. He finally has been put on a professional opioid tapering program. The first thing they do, and you will probably not need this step, is they switch the clients over to Suboxone as that is a drug that is difficult to find on the street and has a high affinity for the receptors so it is not subject to abuse. Once he was stable on that for 2 months they started the actual taper. He gets tapered about 6 percent every 2 weeks. He started the actual taper in early July and we hope to have him done by Christmas but even at that he finds it a struggle. Horrific night terrors, can't sleep, debilitating anxiety, constipation, the list goes on and on. He has to stabilize on one dose before he attempts the next step. He finds it so difficult that (at 40 years of age) we have to dose out the meds to him because he would be too tempted to make the bad stuff go away to do it on his own.

            He had been on Oxicodone a few years back and found that a cake walk to get off of compared to the stronger opioids. I wish you luck.
            Thanks for your concern and Iím sorry youíre sons dealing with this. Opioid withdrawal is physically and emotionally painful. You hurt all over, you cry uncontrollably, itís dark. All that said, I welcome that pain for a couple reasons. First, Iím a bodybuilder first and foremost. So if I canít eat, we got a problem. At this level of opiates, my gut motility is trashed. So Iím constipated...and that in and of itself makes me sick. Second, compared to benzo withdrawal, opiates are a cake walk. The amount of terror, feeling of death, ear ringing, blood pressure skyrocketing and a risk of seizure and death...that was insane. I quit the vicodin 6 weeks ago for a month. Then the pain of dropping the Xanax was so bad, I reinstated the vicodin and OxyContin. I know I can quit the opiates, I wasnít so sure about the Xanax.

            let me also say, they wanted to do that with my Xanax. Switch me to a longer acting benzo then taper. I refused this because the longer acting benzo is much harder to kick. Itís easier because you donít have to dose yourself on the minute or youíll puke, but so much more addictive. Same with suboxone, they usually give that to people having an issue quitting because the withdrawal between doses is so bad. And no offense to your son or his doc, I get it, sometimes I think...if I get any deeper into these pills, Iíll never make it out. It would be easier to stay a junkie...so I understand the fear and I wish him the best. Itís so hard. Also, my wife givrs me my pills everyday, she has to. Iím not in any way feeling down about that. These drugs are so addictive, itís the only way I wonít cheat. Iíve been tapering the opiates as well now. Trying to get to a normal dose say 40mg oxy alone then convert to the weaker drug, vicodin, then continue my taper. But I wonít do that until im 100% off xanax.

            I am also lucky the drug Iím actually addicted to is marijuana. I can smoke it again, that alone allows me to reduce my drugs because the pot potentiates the effect of any other drug in taking. It allows me comfort when Iím withdrawaing. So Iím not technically going cold turkey like your son, I have some help. What heís going through is an archetypal hero story. He has to be reborn into something he never thought he could be, to slay the demon. Thatís how Iím trying to look at this, as a battle for my soul. I must win.

            im shaving my 3rd xanax poll with a nail file...Iím removing 3mg of the pill everyday. The pill started at 130mg, Iíve shaved it to 107mg. This is where itís getting hard and I must slow down. Youíre right, going faster can actually cause brain damage with Xanax. When gaba is too low, because youíre lowering Xanax, glutamate increases. If it increases too much, you can have muscle spasms, heart attack, seizures you name it. These neurotransmitters control every single movement in the body and many brain functions. I wish I could just stop, with opiates, Iíll be sick a week and the recovery can begin. With Xanax I could die. I canít begin to explain how scary that is. I canít understand why no one told me that and kept increasing my dose.

            Im rambling now, but again, I really wish your son the best. He shouldnít feel bad about what has happened. Iím sure heís extremely ashamed...though he shouldnít be. But when he gets through this, he will get an amazing gift in return..his life.

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            • #51
              UPDATE

              i keep trying new things in an attempt to prefect this lid closure issue while I sleep. They seem to be helping a lot actually.

              I did blinking evercises every hour hour in the hour yesterday for about 8 hours. My head was banging let me tell you...I also closed the lids, tried to keep them closed and looked in every direction. Up, down, left, right and roll them around. When I do this, the lids just snap open, after a few hours of blinking exercises, I was able to keep them shut most of the time. So Iím defintely going to put more effort into retraining all these muscles I didnít use cause I was in pain.

              big break came when I fell asleep with my compress on the other night. It was an accident but I realized it kept my lids shut. Iíve tried the tranquileyes goggles with the foam, but it barely made contact with the lid. Since my compress has beads, it can form to my eyelid and touch pretty much all of it. So I canít open my eyes really at all. The first 3 hours I slept, I had it on too tight and my eyes felt it. So when I woke up with it off, I layed it on my eyes with not much pressure and put my sleep mask over it to keep the beads presssed against my lids.

              this was HUGE! Not putting in ointment was HUGE. My eyes are tearing naturally as I write this. I understand why Latkany and other docs do not advise to use ointment. I just used oasis tears plus because I know I donít react to it.

              Last night was great...Iím excited because I was getting frustrated with the tape. I realize now it was making me itch so bad, I wasnít sleeping well at all. Last night I actually slept 3 hours straight. Itís been months since thatís happened, then I got another 3 hours...usually I wake up at least every two hours. Doesnít sound like much but Iím so rested right now.

              anyway, just goes to show you this disease requires fine tuning to the extreme. Especially for me because Iím allergic to EVERYTHING! Before today, I was doing great, didnít even realize the ointment was still an issue. Mind boggling!

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              • #52
                I figured out a long time ago that half my problems related to the fact that I was reacting to practically everything I was putting in them, that is why I started using the non preserved saline and almost overnight felt a lot better.

                Interesting about the beads though. I also fell asleep with them on and woke up about 3 hours later and my eyes really hurt and I was afraid that I had done some damage. Turns out they were OK but I thought that if I loosened them up I could use it as a sleep mask to keep my eyes shut for sure cause they really kinda stick to the lid and you cannot open them. I was too afraid to try because i wasnt sure what the right pressure would be. The sleep mask would be just about right though, I might try it tonight.

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                • #53
                  Originally posted by farmgirl View Post
                  I figured out a long time ago that half my problems related to the fact that I was reacting to practically everything I was putting in them, that is why I started using the non preserved saline and almost overnight felt a lot better.

                  Interesting about the beads though. I also fell asleep with them on and woke up about 3 hours later and my eyes really hurt and I was afraid that I had done some damage. Turns out they were OK but I thought that if I loosened them up I could use it as a sleep mask to keep my eyes shut for sure cause they really kinda stick to the lid and you cannot open them. I was too afraid to try because i wasnt sure what the right pressure would be. The sleep mask would be just about right though, I might try it tonight.
                  Yep, I literally thought, I may have to just use saline and serum. I react to everything, to varying degrees. To be honest, I think thatís why initially in my injury, things were so much worse. The doctor told me to use lacrilibe. The only ointment on the planet with a preservative. I also used refresh optive, that stuff crusted my eyes and I believe Iím allergic to the CMC.

                  So I fell asleep on my couch for two hours with the heat mask on. No ointment, no gel, and yep, that was a mistake lol. My right eye felt like sandpaper. Soooo...I came upstairs, used my ointment begrudgingly, taped my eyes and slept from 12-4:30am.

                  thats huge, tape didnít itch very much thank god. Ointment didnít feel as bad, decided to use much much less. I think if I take a break from the tape and ointment every few days, I may be able to limit my reaction to it. im also at a crossroads...do I attempt to use a disappearing preservative in say genteal gel or systane gel and try to replace my ointment? Is a preservative less bad if I do not react to the product? I know I do not do well with preservatives, but everyone dies over how good that genteal gel is. I also know Jain would NOT want me using anything with a preservative. So Iíll be playing with that soon.

                  Finally, youíre right about the mask. It did bother me a bit because I stupidly put it on so tight last time. To be honest, even if it lays on my eyes gently, itís still something on my eyes. Iím guessing it canít be good for the MGs to have pressure on them all night. So I have to limit that as well. It seems like Iím going To have to cycle between bubble bandages, tape, sleep masks and beaded masks in order to limit my exposure to allergens. Itís not going to be one solid plan, it will have to change as I react to the products. So complex.

                  Hope youre doing well with your IPL...I think I saw you write that things slid back a bit, but you are having another session soon. I really hope this is sustainable for you. Would be exciting to know IPL is another great tool we can all use. I was impressed by your results. Hope your sons feeling well also...I cannot wait to hear heís clean and feeling better.

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                  • #54
                    For what it is worth, on one of Dano's posts I uploaded a picture of my eye on ointment and guess what, it was Genteal ointment, not sure if it was gel or ointment or if there is a difference but I think it is the petroleum products that my eyes don't like. I did try the beads last night but also found them a bit heavy but I do have an older bead mask that is about half the thickness so I think I'll pop that on tonight.

                    I a doing well following the IPL but expect to do a couple more sessions before I head south. The difference between this year and last with the forest fire situation was profound. I anticipate having a really great winter with the high humidity in the tropics. I just started Xiidra a couple of weeks ago and am hoping that helps with the inflammation and aqueous deficiency....fingers crossed.

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                    • #55
                      The Genteal with the petroleum is the night ointment, not the Severe Eye Gel. All those night ointments made with petroleum totally bother my eyes too, makes my eyes red and feel worse. I only used these ointments because it was like a preservative-free Aquaphor, to heal skin around my eyes when it would get dry, raw, etc. from all the stuff I used to do to my eyes when they were severely dry...using the PF ointment to heal skin close to the eyes was recommended by my eye doctor.

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                      • #56
                        Originally posted by Hokucat View Post
                        The Genteal with the petroleum is the night ointment, not the Severe Eye Gel. All those night ointments made with petroleum totally bother my eyes too, makes my eyes red and feel worse. I only used these ointments because it was like a preservative-free Aquaphor, to heal skin around my eyes when it would get dry, raw, etc. from all the stuff I used to do to my eyes when they were severely dry...using the PF ointment to heal skin close to the eyes was recommended by my eye doctor.
                        Agreed, even if I stop putting it into my eye, itís so soothing to the lids. I will not stop applying it to my lids. Iím afraud to try new things, as Iím sure you might understand. Bought the genteal gel and havenít used it yet. I guess Iím still debating on weather the preservative is safe given the benefit.

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                        • #57
                          Originally posted by farmgirl View Post
                          For what it is worth, on one of Dano's posts I uploaded a picture of my eye on ointment and guess what, it was Genteal ointment, not sure if it was gel or ointment or if there is a difference but I think it is the petroleum products that my eyes don't like. I did try the beads last night but also found them a bit heavy but I do have an older bead mask that is about half the thickness so I think I'll pop that on tonight.

                          I a doing well following the IPL but expect to do a couple more sessions before I head south. The difference between this year and last with the forest fire situation was profound. I anticipate having a really great winter with the high humidity in the tropics. I just started Xiidra a couple of weeks ago and am hoping that helps with the inflammation and aqueous deficiency....fingers crossed.
                          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?

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                          • #58
                            UPDATE

                            ill make this short...took half a flexaril muscle relaxer last night. I passed out in the chair I sit at to put my ointment and bandages on....before I protected my eyes. I woke up worried, because when I sleep at all and donít cover my eyes, I wake up with inflammation and gritty, burning pain. However that didnít happen...my eyes werenít even that dry. My lids stayed closed and I think itís because the muscles in the lids werenít tensed up. Itís like my lids are cramped...I have to almost force them closed. Like when your calf cramps and your foot points straight out...you almost have to stand your whole body weight on the foot to get the calf to relax. I feel as if my right eyelid especially is under that level of cramping at times. My cheek, neck and forehead on the right side are sore from assisting the lid closed. I am doing blinking exercises in hopes of correcting that, been 3 days so far Iíve been taking it seriously again.

                            I may consider botox because i dont need any more oral medications. I just thought that was odd....got one good night of sleep. Taped my eyes and felt great this morning. So much so Iíve been slacking on drops like a fool.
                            Last edited by Dowork123; 15-Sep-2018, 03:35.

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                            • #59
                              Dowork123 , seems your eyes are doing pretty well. Maybe save the Genteal Gel for when your eyes feel severely dry.

                              What would you be doing Botox for? Iíve read in this forum for some it made their eye situation worse.

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                              • #60
                                Originally posted by Hokucat View Post
                                Dowork123 , seems your eyes are doing pretty well. Maybe save the Genteal Gel for when your eyes feel severely dry.

                                What would you be doing Botox for? Iíve read in this forum for some it made their eye situation worse.
                                I read somewhere that for lagopthalmos sometimes botox is used in the lids to relax the muscle. Itís super risky I feel...because like you said, you could make things worse.

                                EDIT: thanks, I will hold off on the gel..stay with the ointment for a while.

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