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Just want to say hi to everyone and document my issues in hopes of helping someone.

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  • I had that feeling. I have gone through some suicidial levels of pain lately but hopefully through with that.

    last week i got my blood serum drops and was doing well with hot compress. Was getting out and doing stuff. Then friday lipiflow. Over the weekend had intense pain again. Iíll be honest not sure how long i can deal with that.

    Luckily ive moved back in with my mom who is retired nurse and takes care of me. I feel pretty selfish about taking all her time with the crying and pain. Just keep on i guess. Im afraid for winter and low humidity.

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    • Must be nice to have some company. Its not selfish at all, we are severely affected by this disease.

      I usually just go home after work/school and lay on couch alone and close my eyes because of the pain. I can't really get any good sleep anymore either. Today I have been awake since 1 or 2 am. Feeling pretty terrible right now.

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      • Originally posted by edmunder View Post
        I had that feeling. I have gone through some suicidial levels of pain lately but hopefully through with that.

        last week i got my blood serum drops and was doing well with hot compress. Was getting out and doing stuff. Then friday lipiflow. Over the weekend had intense pain again. Iíll be honest not sure how long i can deal with that.

        Luckily ive moved back in with my mom who is retired nurse and takes care of me. I feel pretty selfish about taking all her time with the crying and pain. Just keep on i guess. Im afraid for winter and low humidity.
        Don't feel bad, you're going through some hardcore shit...spend time with your mom, even if it's not ideal. I'm sure she loves you and just wants you to feel better.

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        • Originally posted by dano6533@gmail.com View Post
          Must be nice to have some company. Its not selfish at all, we are severely affected by this disease.

          I usually just go home after work/school and lay on couch alone and close my eyes because of the pain. I can't really get any good sleep anymore either. Today I have been awake since 1 or 2 am. Feeling pretty terrible right now.
          I feel like something's wrong with your plan...you should be getting "some" relief by now. Genuinely hope you feel better soon. Have you tried night protection? Goggles and ointment?

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          • So I just went through everything again...here's what I'm curious about and what I suggest. How much doxy are you taking? Are you currently on steroids, how much and what type/brand?

            so your schirmer tripled and your lipid thickness almost doubled and you feel the same? This is odd right? So let me give you my solution. My lipid thickness and schirmer are identical to your first ones. Yet I'm feeling a lot better. Why? Well my doctor realized my eyes were opening when I would sleep. Since you're already doing so much shit, let's look at what you're not doing....

            so id buy eye shields or goggles wear them every night and I'd religiously use a gel or ointment at night. If you sleep on your side, changevthat. You could be pulling your eye open pushing it into the pillow. Gotta learn to sleep on your back, I hate it. I prefer ointment cause it lasts longer. If you can use gel, use it, it's cleaner and easier to deal with. For me, I can't use gel. I have to use ointment...gels just run out of my eyes. Now for the doxy, I would titrate up to 200mg for a month then slowly bring it down to 50mg as maintenance. Also, I'd get my thyroid checked, low thyroid causes floppy eyelid syndrome...which causes the eye to flop open at night.

            For me, the doctors kept sayings, you're all good, go home, see you in a year. Then I'm back in a week. Finally I found a dr that cracked this mystery of me sleeping eyes open. Now I'm not healed, clearly, but my suffering has been reduced A LOT and I just started doxy. So my hope is we can get my lipid tickness better and that will help even more over the next month.

            I mean youre doing EVERYTHING pretty much...so the only thing standing out is your doxy dose and even more so, nocturnal lagopthalmos.

            if you want my humble opinion, I would stop all medication except for doxy. Your clinical signs are better but you don't feel better, I interpret that as something is irritating your eye. I believe you're dumping too much "stuff" into your eyes.

            I think you need a compounded steroid with no preservatives for a month. Stay on the compress but twice a day and get a hypochlorous acid lid cleanser. Stay on doxy at 200mg for one month (if stomach can handle it) then taper slowly to 50mg maintenance. Get autologous serum 20% at 8x a day (could do 50% also). You may possibly need an antibiotic too...ointment or drop. Make sure the eyes are protected at night with goggles AND ointment/get. Stay on all the supplements. Eat no refined sugar. Eat more healthy oil (macadamia nut, avocado, olive, etc.) Drink one gallon of water minimum per day. Hope this helps in some way.
            Last edited by Dowork123; 31-Jul-2018, 14:31.

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            • Dowork123 thanks for the advice man

              how did your doc know youd sleep with eyes open?
              how long should i stop taking the meds for?

              ill try sleeping on my back too, i always sleep on my side so that is gonna be tough
              ive tried the serum and it did not really help me
              its amazing you are feeling better with such low scores

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              • Originally posted by dano6533@gmail.com View Post
                Dowork123 thanks for the advice man

                how did your doc know youd sleep with eyes open?
                how long should i stop taking the meds for?

                ill try sleeping on my back too, i always sleep on my side so that is gonna be tough
                ive tried the serum and it did not really help me
                its amazing you are feeling better with such low scores
                I put serum in my eyes every hour regardless of how dry they are. I think that's a huge help. I think doing my compresses right helps A LOT.

                I dont know everything, and I'm not a doctor. So I'd consult with a new doctor until you find someone who's really ****ing good at their job. So here's how he figured it out, it was like he was watching me sleep no lie. I was blown away. I got an erosion, I came in and explained what happened and he said, you're sleeping with your eyes open...and you probably have a vent above your head. I was like, holy shit, I do. He then said, are you a side sleeper. I mean he blew my mind. So then I realized...the soil didn't make my left eye worse, my left eye had less functioning glands, so it was more dry and therefore took more damage. For the last 9 years as s bodybuilder I took a nap on my couch probably 4-5 days a weeek for 45-120 minutes. Every single time I slept in my left side clutching my cat. I genuinely believe that's why my left eye is so bad. This has been brewing for YEARS!

                so all that said, my doctors are great. I finally have excellent care. The doctor I just saw at UIC expanded on what my corneal specialist said and basically told me I had a non classical presentation of floppy eyelid syndrome and were doing some bloodwork to check my thyroid. So my eyelids are very elastic and stretch open at night. I think we're onto something here. I'll keep you posted. But both told me restasis was useless.

                Have you had a confocal microscooy done? It seems like nothing fixes your pain. Does your pain go away when the dr puts the numbing flourescin drops in your eyes? You may have some nerve issues going on.

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                • HiĀC


                  I have lipiview. the result is similar to your latest one. One is 70+. one is 80+.

                  But I still feel uncomfortable, level 6 from 1(no symptom) to 10(unbearable pain).

                  They said above 70 is normal. So looks like lipiview is not trustworthy. Or as someone in the forum said above 100 is normal

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                  • dano6533@gmail.com are you still on serum drops? By the way I use 100% every two hours except for night time. The reason I am asking is because your symptoms seem to be more significant then signs. Am I correct to assume that? Some people benefitted from Prokera.

                    Do you trust your doc? Have you seen several?
                    Do you feel burning or pain? Like an ache? Soreness?

                    Also, have you done lip biopsy to rule out Sjogrens? I understand it is super unlikely but I think it is important to know. Blood work is pretty useless for that. Autoimmune conditions often can be diminished through therapies that are not specifically targeted to the eyes.

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                    • hopeful_hiker

                      ​​​​​​​trust yes, ive seen 6-8 opto and optho so far
                      pain buring dryness, all of the fun things
                      have not done the lip biopsy

                      how are things going for you?

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                      • Originally posted by dano6533@gmail.com View Post
                        how are things going for you?
                        All over the place. If you asked me last week I would say not good, and I don't see how I can be like that indefinitely. If you've asked me two weeks ago, I would say 70% normal. Also, perpetually scared of things getting worse or not going away. Starting to see counselor specializing on illness-related psychological problems.

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                        • hopeful_hiker yes an illness related counseling seems like a good idea but im not sure what they could help me with. Usually when i do counselor type stuff i get really emotional and cant stop crying. Seems better not to! Haha

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                          • Hi Dano
                            You wrote ''I have been using hot compress and it just seems to make my eyes worse.'' in another posting
                            If you meant inflammation

                            wise to find a doctor who can do MMP-9 (and osmolarity) test(s) for you (since your dr who does LipiFlow does not have them) so you can get accurate diagnosis, be treated properly/effectively to stop progression.
                            Besides these tests can also monitor if the treatment plans work too.

                            Your LLT are pretty high, so best is to put the inflammation under control sooner.

                            Do you have such issue or not, if yes, bacteria or demodex? If so, what recommendations dr makes, lid hygiene brand etc?

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                            • MGD1701 yeah really bad inflamation
                              no mention of bacteria or demodox mite
                              ive tried occusoft lid wipes and baby shampoo but they did nothing to help, may have made things even worse

                              how are things going for you? are you getting any relief?

                              thanks for your info

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