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  • UPDATE

    the last time I got in s plane was right before I started treatment with Dr Jain, 4 months ago. Iím on a plane now going back to Vegas and Iím thinking this trip is going to be much better than the last. I think Iíll actually be able to function. We shall see, Iíll keep you all posted.

    I genuinely believe the heparin is working already. The burning in the right eye is almost completely gone. Still a bit sore, but way better. Even if itís a placebo, I will take anything at this point, lol. Iíll keep you posted. The TSA at midway was super cool. Let me through with all my cooler packs. Was super relieved about that.

    Anoher member and myself noticed that heparin comes in preparation by hylo forte called hylo parin. Seems to be really good for people with conjunctivitis Dr Jain said. So if you have access to that drop, could always give it a shot as itís OTC.

    Comment


    • Dowork123

      I would like you to present your thoughts over an observation I made recently.

      As you know I am taping my right eye for the past three weeks since I discovered part of my problem was due to the fact that my eyes remained partially opened during sleep at night. Well for the last 18 days I woke up almost every morning with clear pink eyes and my eyes felt nicely rested. But today I woke up with mild redness in the nasal corners of my eyes, signs of faint reddishness in the sclera of my right eye and a sensation of mild overall discomfort in both eyes. So I was wondering what possibly went wrong yesterday night. Even though the signs of inflammation were next to nothing in comparison to what I used to have before I started taping my eyes, it's worrisome.

      After some careful brainstorming I have come up with the apparent conclusion that it's excessive use of my smartphone yesterday evening that possibly gave different results. The major difference among the other days and yesterday over the last three weeks was that I stared at my smartphone screen relentlessly for several hours yesterday evening right upto the point I went to sleep.

      I am hypothesizing the effect to be a direct effect on the circadian rhythm of our body that's necessary for a good REM sleep. I think the excessive blue light exposure from digital screen use disrupted my sleep quality yesterday night. I could remember that I was partially awake at various instants of time during my sleep yesterday night and my eyes were partially open so that I could see the dim light in my room. This hasn't happened for the last 18 days when I restricted my digital screen usage significantly. I am now starting to believe that a disrupted sleep is the reason my eyelids are opening up at night during sleep. At this point you might be wondering if my right eye was taped then how did my eyelids open up in my right eye. Well I tape my eyelids gently with two vertical strips of paper tape placed on the left and right of the temporal portion of my upper eyelids that sticks to the skin of my tear trough in the bottom. I then place two horizontal strips crossing the vertical strips one on my upper eyelid and another on the tear trough region to prevent the vertical strips from peeling off. This ensures a decent seal that's enough to keep my eyelids shut during sleep but I can easily open up my eyelids partially in the taped condition if I consciously put an effort to do so. So basically it's not a very tightly applied tape for more comfort during sleep. I guess a disturbed sleep is enough to force open my eyelids through the taping and this might be what has happened yesterday night. Maybe my practice of refraining from digital screen use for the past three weeks is what actually worked to keep my eyelids shut at night thanks to a restored good quality sleep. But the whole thing got disrupted again yesterday night possibly due to my digital screen use before sleep. I can't figure out any other reason behind this since even before I started taping my right eye there were some nights when I didn't have an inflammation or irritation upon waking up and there were some nights when I would wake up in the middle of my sleep at night rubbing my right eye to find a severely bloodshot eye in the mirror. So I am under the impression that I tend to open up my eyelids on those nights when I have a poor quality sleep (possibly due to blue light exposure before sleep).

      I think you are the best person I can reach out to who has plenty of experience with nocturnal lagophthalmos and sleep study.

      What do you think about my observations based on your personal experiences?

      What if we both do an experiment and refrain from or at least restrict digital screen usage for a week to see if it restores the natural ability of our eyelids to relax during sleep?

      I believe a disturbed sleep is what causing the eyelids to open up during sleep.
      Last edited by Milo007; 03-Nov-2018, 00:42.

      Comment


      • Milo007

        i think your speculation is possibly correct. I know that reduced blinking and exposure will cause inflammation. That can translate to poor lid closeure.

        However, you can tape your eye better. It may seem riskier. I guess it may be, but I did it because I literally had nothing to lose. I tape from the nose, over the lids entirely, to temple. I start laying the tape down at my nose and I try to apply it on my upper lid first, then push down onto the lower lid as I work it across to my temple.

        So you ask, why does it happen some night and not others and different feeling in different eyes? I know itís the way my lids are failing. The inside of the left eye by the nose, pops open and the rest of the eye stays close. So I never get burning in my left eye. Because itís 97% closed except that tiny microscopic spot that covers the carunkle. My right eye open at the temple, and open much wider. Maybe 3/4 of that right side. So it burns and feels scratchy. So for me, Iíve come to realize itís just the way my lids fail so to speak.

        Some jughts, if I donít put the tape in right, my eyes can open under the tape. I have long upper lashes that protect my eye. So I can look out and Iím usually ok. But I test it out before I go to sleep right after I put it on. I try opening the lid relatively forcefully. If it opens, I retape it however many times it takes to keep it clamped down.

        for me that was the key, consistency. But I agree that all these stressors, computer tone, lack of sleep, poor diet, dehydration, all that effects the eyes. So yeah, itís imprtant to stay vigilant about your lifestyle. It sucks sonetimes, to feel chained to this way of life. But I feel better, so I guess itís a good thing. Hope that helped.
        Last edited by Dowork123; 04-Nov-2018, 06:23.

        Comment


        • UPDATE

          So Iím on my last day in vegas. I did this trip four months ago, last time, I was stuck in my room my eyes hurt so bad. This time, Iím driving a convertible around with the top down everyday. I am wearing moisture chambers, which are a must, but I get literally zero discomfort. I went from disabled, to very functional. Iím very happy. I hope once I come off the steroids, the heparin takes over so to speak. I know the heparin is working for sure. So Iím very very positive now.

          one negative thing thatís happened. My ziena glasses are rubbing my ears raw. And so my right ear is cherry red and has a sore on it. But I have to wear these glasses. So, I must figure something out. I ordered the 7eye venture. Which fit much better, is lighter, and wraps around so I donít lose my peripheral vision. So Iíll keep you posted on that. I definitely need to get that pair in soon and honestly, buy another pair or two for options if this happens again.

          Comment


          • Originally posted by Dowork123 View Post
            One negative thing thatís happened. My ziena glasses are rubbing my ears raw. And so my right ear is cherry red and has a sore on it
            You're on the wrong site for that - you need RawEarZone.com..

            Seriously, I'm very happy you have this much improvement!

            Comment


            • Originally posted by Meibum Ian View Post

              You're on the wrong site for that - you need RawEarZone.com..

              Seriously, I'm very happy you have this much improvement!
              Thank you, Iím very excited about this. Didnít think Iíd get here ever.

              Comment


              • So you are using Heparin eye drops not pills, right? Did the bumps on your inner eyelids appear because of the floppy eyelid syndrome? I am a bit confused by that. Would not you actually have less rubbing because your eyelids are more loose? SLK, for instance, happens to people with thyroid problems because the eyelids are too tight.

                Anyway, so great to hear about your progress!

                Comment




                • Originally posted by hopeful_hiker View Post
                  So you are using Heparin eye drops not pills, right? Did the bumps on your inner eyelids appear because of the floppy eyelid syndrome? I am a bit confused by that. Would not you actually have less rubbing because your eyelids are more loose? SLK, for instance, happens to people with thyroid problems because the eyelids are too tight.

                  Anyway, so great to hear about your progress!
                  Eyedrops, not pills. The idea with floppy eyelid is that you rub your eyes a lot in your sleep. By mashing your face into the pillow. That causes the floppiness. Then when the lid becomes elastic, a lot of issues begin to arise. Itís not the eyelid thatís causing rubbing, itís the rubbing causing the eyelid issues.

                  Dr Jain said something triggered this. Usually itís the proteins in your contact lenses. I think mine may have been the soil that got into my eyes. But something threw me into this extreme response. Iím sure it was many tinges. But the mechanical rubbing is causing the bumps on the back of my lid to remain agitated and inflamed. Did that explain it properly?

                  thank you, Iím happy this is working. I fear coming off the steroids. I think I still need them but how long can we continue this? But overall I feel good about the future. I have options.

                  Comment


                  • Dowork123 is it a regular eye drop or is it something you have to compound at the pharmacy or order from Europe?

                    I also have papillae (red bumps), minimally now but not gone. I was told that the eyelid can get irritated from runnning on the eyeball when lubrication is not good enough. Another option could be allergies, and of course, contact lenses (not in my case).

                    I know that steroids also get rid of the papillae. Hopefully, a new steroid comes to the market soon that does not create pressure or cataract problems.

                    Comment


                    • Originally posted by Chemia

                      Hi Dowork,
                      You and I exchanged messages privately and I am really interested in the heparin since I deal with constant foreign body sensation in eyes. I thought I would share a response I received regarding hylo parin eye drops:

                      HYLO PARINģ is a sterile preservative-free solution containing 1 mg/ml sodium hyaluronate, 1300 I.U./ml heparin sodium (from the intestine mucosa of pigs), glycerol, a citrate buffer and water.

                      HYLO PARINģ humidifies, moistens and cares the cornea and conjunctiva and relieves the irritations of the eye caused by environmental burden. Symptoms such as redness of the eye, burning and itching are relieved.

                      HYLO PARINģ contains sodium hyaluronate, a physiologic substance which is found in the eye but also in other tissues of the body. Sodium hyaluronate has the special property to form an even, stable, especially long lasting layer of humidity on the surface of the eye without being rinsed away very quickly. This so-called bio-adhesive property is supported by heparin. Heparin also is a physiologic substance which resembles in its chemical structure sodium hyaluronate. Sodium hyaluronate and heparin care for the cornea and conjunctiva and together with the natural tears they lubricate the surface of the eye. The eye is supplied with a long lasting and stable tear film and by this protected against environmental irritations. Because of being preservative-free and containing physiologic substances HYLO PARINģ is usually very well tolerated.

                      Heparin is an acidic mucopolysaccharide. Various amino and hydroxy groups of this molecule are sulfated. Because each monomer contains one or two sulfuric acid groups, heparin is one of the strongest acids, occurring in the human body. Heparin is not a structurally uniform substance but a mixture of linear anionic polyelectrolytes of different chain lengths.

                      Thus, heparin has a high structural similarity to the highly polymeric glycoproteins of the physiological mucin layer. Both heparin results and the various mucins of the tear film are glycosaminoglycans.

                      Moreover, due to this chemical structure high water binding capacity of heparin, which has a particularly large hydration shell.

                      In addition to these physical-chemical properties of heparin that are used to lubricate the eye, heparin has protective properties on the ocular epithelia. Thus, a damaged ocular because an insufficient corneal tear film surface is improved or stabilized in its integrity.

                      Beside this, any systemic pharmacologic effect, e.g. on blood coagulation is not possible because the substance is not able to enter the body. Heparin is a very large molecule which is until now only available for parenteral use because the substance does not reach the circulation after oral administration. Because of its specific mode of action the anticoagulant effect is only seen when heparin entered circulation. As the cornea is a very well functioning barrier for the penetration of substances it is very unprobable that any amount of sodium heparin becomes available systemically after topical ophthalmologic application.

                      Due to the size of the molecule systemic effects, such as inhibition of blood coagulation, are not probable after topical application of heparin at a concentration of 1300 IU / ml.

                      Unfortunately HYLO PARINģ isnít available in the US. Please consult an internationally acting pharmacy or an internet store for purchasing this product.

                      We wish you the best of health.
                      Absolutely awesome information, thank you for posting this!

                      Comment


                      • @Chemia Thank you for this post, I hadn't heard of this eye drop before. In the past year I must have tried over 30 different eye drops for EDE and none of them have done anything except make my condition worse or just provide momentary relief.

                        I have just ordered this from a German pharmacy. Looking forward to trying it out!
                        Last edited by Alix; 06-Nov-2018, 16:10.

                        Comment


                        • Originally posted by Alix View Post
                          @Chemia Thank you for this post, I hadn't heard of this eye drop before. In the past year I must have tried over 30 different eye drops for EDE and none of them have done anything except made my condition worse or just provide momentary relief.

                          I have just ordered this from a German pharmacy. Looking forward to trying it out!
                          Do they ship internationally? Which pharmacy did you order from? I am in Canada though.

                          Comment


                          • Originally posted by hopeful_hiker View Post

                            Do they ship internationally? Which pharmacy did you order from? I am in Canada though.
                            Hi I bought them from here:

                            https://www.pharmasana.co.uk/hylo-pa...10-ml-06079439

                            Yes they ship internationally, though the shipping costs are exorbitant. I just checked and unfortunately they don't seem to deliver to Canada, but you could try contacting them all the same.

                            Comment


                            • Originally posted by Alix View Post

                              Hi I bought them from here:

                              https://www.pharmasana.co.uk/hylo-pa...10-ml-06079439

                              Yes they ship internationally, though the shipping costs are exorbitant. I just checked and unfortunately they don't seem to deliver to Canada, but you could try contacting them all the same.
                              I might order the product and try it...the concentration is 13x higher than what my doctor gave me. Very interesting.

                              Comment


                              • Hey,

                                So glad to hear you are doing better! Its great news.

                                I just wanted to post this also http://www.scopeophthalmics.com/hylo/hylocare - I would love to know the difference between this product and the Hylo-Parin ? Only because I talk to a lady in America who suffers from dry eye pain and she ordered this product and has had amazing success. Hmmmm any suggestions?! She has corneal neuropathy.

                                Comment

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