Announcement

Collapse
No announcement yet.

Dry eyes when flushing / Ocular Rosacea / Tetracyclines? - Advice please

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

  • Dry eyes when flushing / Ocular Rosacea / Tetracyclines? - Advice please

    Hi all,

    I am a 21-year old male and have been reading this forum a little while now, this however is my first post:
    I have Erythematotelangiectatic Rosacea with persistent redness and moderate to severe flushing. All in all this has not been a big problem for me, until my eyes started to get involved in this...

    First of all: Shortly after flushing, I feel my eyes getting dry, red and burning. So on top of the usual problems I have with my eyes (they are always dry, red, itchy - i sometimes have to use eyedrops every 20mins!), obviously flushing reduces the amout of tears produced. Can someone confirm this is happening to them, too?

    Secondly, could you please tell me, whether my Eyelid Hygiene regime is correct?

    All of the ophthalmologists I have been to just tell me to do some Eyelid Hygiene. However, this is not helping me at all - actually I think its getting worse.
    I put a hot towel on the eyelids (actually i put it on every 20secs or so because it is getting colder very fast) for a few minutes. Then I massage the lid in direction of the eyeball. After that, I use small cotton stick (wet) to "clean" the area where the eyelashes are.
    Any suggestions?

    Finally:
    I have been visiting an ridiculous amount of derms and ophthalmologists this year - no one seemed to really know what they're doing or talking about - not to mention that neither of them really does care.
    I have most of my knowledge about this condition from the internet, partly from official papers - designed for doctors - which they obviously did not care to read.

    My eyes are very important for my job and permanent damage to them could lead to an end of my career, so I must have an effective approach to this problem, ASAP.

    So, when I schedule my next appointment with my ophthalmologist, I want to talk to him about tetracyclines. Does anyone of you has any experience with it and can tell me whether it worked?

    Thanks in advance
    M

  • #2
    dry eye syndrome

    It is odd that no one replied to your post.

    First off, read this post.

    You might consider seeing Dr. Robert Latkany in NY. He is one of the foremost experts on dry eye syndrome. He has written several books on the subject.
    Brady Barrows
    Blog - Join the RRDi


    Comment


    • #3
      lollapalooza

      Originally posted by lollapalooza View Post
      Hi all,

      I am a 21-year old male and have been reading this forum a little while now, this however is my first post:
      I have Erythematotelangiectatic Rosacea with persistent redness and moderate to severe flushing. All in all this has not been a big problem for me, until my eyes started to get involved in this...

      First of all: Shortly after flushing, I feel my eyes getting dry, red and burning. So on top of the usual problems I have with my eyes (they are always dry, red, itchy - i sometimes have to use eyedrops every 20mins!), obviously flushing reduces the amout of tears produced. Can someone confirm this is happening to them, too?

      Secondly, could you please tell me, whether my Eyelid Hygiene regime is correct?

      All of the ophthalmologists I have been to just tell me to do some Eyelid Hygiene. However, this is not helping me at all - actually I think its getting worse.
      I put a hot towel on the eyelids (actually i put it on every 20secs or so because it is getting colder very fast) for a few minutes. Then I massage the lid in direction of the eyeball. After that, I use small cotton stick (wet) to "clean" the area where the eyelashes are.
      Any suggestions?

      Finally:
      I have been visiting an ridiculous amount of derms and ophthalmologists this year - no one seemed to really know what they're doing or talking about - not to mention that neither of them really does care.
      I have most of my knowledge about this condition from the internet, partly from official papers - designed for doctors - which they obviously did not care to read.

      My eyes are very important for my job and permanent damage to them could lead to an end of my career, so I must have an effective approach to this problem, ASAP.

      So, when I schedule my next appointment with my ophthalmologist, I want to talk to him about tetracyclines. Does anyone of you has any experience with it and can tell me whether it worked?

      Thanks in advance
      M
      A diagnosis is only a pathological description of the end effect usually given by a doctor. In the majority of cases the cause of a pathological disease is known; and for that there is a known cure.

      With our condition sadly for the doctors there is no known cause and consequently only the end effect i.e. the rosacea/eyelid dysfunction which is only in the doctors opinion; is actually inflammation.

      So therefore you will and can only ever be treated for inflammation with antibiotics usw.

      So in actual fact you are only been treated for the end effect.

      Consequently you are never going to get any improvement with this method of treatment.
      cure

      Comment


      • #4
        Hi lollapalooza, I recently saw an interesting video that was linked by someone on this forum, where a doctor advised wrapping the damp washcloth around a raw potato that had been warmed in microwave. That way the damp washcloth stays warm longer. It seemed like practical advice.

        Comment


        • #5
          continued

          Originally posted by drummond View Post
          A diagnosis is only a pathological description of the end effect usually given by a doctor. In the majority of cases the cause of a pathological disease is known; and for that there is a known cure.

          With our condition sadly for the doctors there is no known cause and consequently only the end effect i.e. the rosacea/eyelid dysfunction which is only in the doctors opinion; is actually inflammation.

          So therefore you will and can only ever be treated for inflammation with antibiotics usw.

          So in actual fact you are only been treated for the end effect.

          Consequently you are never going to get any improvement with this method of treatment.
          I apologise if you found my post a little unwelcoming but I was called to do some shopping and never got back to finishing the original post.

          What I wanted to say was that if you go down the traditional methods of treating this condition as I did the outcome will be that you will be in the same position.

          The real cause of your condition is actually weakness in the excretory process to your eyes. That means when your nerve detects the signal to excrete it does not terminate in a complete secretion.

          The only person who can restore this function is you; by learning how to control your nervous system thereby learning how to switch on the excretion or switch it off.

          I spent years in the devils circle with this condition until I realised these people were never going to be any good: they were just leading me down the garden path!!!!!
          Last edited by drummond; 26 October 2013, 10:52 AM.
          cure

          Comment


          • #6
            hotter longer

            my doctor told me to microwave rice in a sock. This keeps the compress warm for just s long as you need it with one heating. Good luck! I know how hard it is!

            Comment


            • #7
              food does matter

              I have ocular rosacea and have found food choices to be very helpful in controlling outbreaks. I have stopped eating dairy (cow's milk) is a trigger for me and have found that a lot of histamine rich foods are culprits as well. The food as medicine is not universal to everyone. Certain foods triggers outbreaks in some people but not in others. But definitely start researching along these lines. I am also professionally linked to my vision. I have not yet gone down the road of antibiotics because I am optimistic I can find a way to manage the outbreaks through lifestyle choices. Let's keep each other posted on any successes we may have!

              Comment


              • #8
                Hi all,

                thanks for your answers!

                Brady,
                As i am living in Germany, visiting a doctor in NY is - although possible - kind of the last ressort ;)

                tallchick,
                I am currently experimenting with food choices... Especially lactose and sugar are the first things i want to try to eliminate. How long did it take you to see some results?

                I will try your tips and continue with warm compresses, although I don't really see any progress


                So, did anyone of you try tetracyclines? My next appointment is some weeks away and i fear the constant dryness could slowly cause damage to my eyes. Some of the small blood-vessels seem to get into the iris

                Best Regards,
                M

                Comment


                • #9
                  Originally posted by lollapalooza View Post
                  Hi all,

                  I am a 21-year old male and have been reading this forum a little while now, this however is my first post:
                  I have Erythematotelangiectatic Rosacea with persistent redness and moderate to severe flushing. All in all this has not been a big problem for me, until my eyes started to get involved in this...

                  First of all: Shortly after flushing, I feel my eyes getting dry, red and burning. So on top of the usual problems I have with my eyes (they are always dry, red, itchy - i sometimes have to use eyedrops every 20mins!), obviously flushing reduces the amout of tears produced. Can someone confirm this is happening to them, too?

                  Secondly, could you please tell me, whether my Eyelid Hygiene regime is correct?

                  All of the ophthalmologists I have been to just tell me to do some Eyelid Hygiene. However, this is not helping me at all - actually I think its getting worse.
                  I put a hot towel on the eyelids (actually i put it on every 20secs or so because it is getting colder very fast) for a few minutes. Then I massage the lid in direction of the eyeball. After that, I use small cotton stick (wet) to "clean" the area where the eyelashes are.
                  Any suggestions?

                  Finally:
                  I have been visiting an ridiculous amount of derms and ophthalmologists this year - no one seemed to really know what they're doing or talking about - not to mention that neither of them really does care.
                  I have most of my knowledge about this condition from the internet, partly from official papers - designed for doctors - which they obviously did not care to read.

                  My eyes are very important for my job and permanent damage to them could lead to an end of my career, so I must have an effective approach to this problem, ASAP.

                  So, when I schedule my next appointment with my ophthalmologist, I want to talk to him about tetracyclines. Does anyone of you has any experience with it and can tell me whether it worked?

                  Thanks in advance
                  M
                  Hi M. We sound very similar in our conditions. I also have permanent redness with flushing, accompanied by ocular rosacea. When I flush, my eyes flush, ie, get red and more bloodshot. I have a few veins in my eyes that never go away. In bad flushes my eyelids swell. I sympathize with your concerns, as I am an editor and spend my day reading, so my eyes are also very important to my job. Truth be told, the ocular part of my condition causes me the most anxiety. However, I can tell you that without Oracea, which I take daily, my eyes were so much worse. Oracea moved me from that everyday uncomfortable stinging eyes and swollen eyelids, to just a nuisance. It may really help you.

                  I see Dr Latkany, whom Brady mentioned. In my case, he advised NOT to do warm compresses, as he said my main problem was too many/inflamed vessels around my eye, which become more aggravated by the heat. My clogged glands are not such an issue. He advised, instead, that I do cool compresses twice a day. We have also discussed Restasis, which he said works well in some people with ocular rosacea, but we decided to hold off on it for now, since my symptoms are stable. He said once you start it, it is a long-term treatment. Basically, we are keeping it in our back pocket for later.

                  So, you have options. If you are in the New York area, I would recommend Dr Latkany. He is the first ophthalmologist I have seen who is knowledgeable about ocular rosacea.

                  Good luck, Alyssa

                  Comment


                  • #10
                    Originally posted by lollapalooza View Post
                    Hi all,

                    thanks for your answers!

                    Brady,
                    As i am living in Germany, visiting a doctor in NY is - although possible - kind of the last ressort ;)

                    tallchick,
                    I am currently experimenting with food choices... Especially lactose and sugar are the first things i want to try to eliminate. How long did it take you to see some results?

                    I will try your tips and continue with warm compresses, although I don't really see any progress


                    So, did anyone of you try tetracyclines? My next appointment is some weeks away and i fear the constant dryness could slowly cause damage to my eyes. Some of the small blood-vessels seem to get into the iris

                    Best Regards,
                    M
                    After posting my last post, I realized that you are in Germany, so visiting a NY doctor is not possible. I really think that talking to your doctor about low-dose doxycycline could help. Until you get to see him, use lubricant eye drops. I use Refresh Liquigel and it works quite nicely.

                    Comment


                    • #11
                      Similar, severe symptoms

                      Originally posted by alyfpet View Post
                      Hi M. We sound very similar in our conditions. I also have permanent redness with flushing, accompanied by ocular rosacea. When I flush, my eyes flush, ie, get red and more bloodshot. I have a few veins in my eyes that never go away. In bad flushes my eyelids swell. I sympathize with your concerns, as I am an editor and spend my day reading, so my eyes are also very important to my job. Truth be told, the ocular part of my condition causes me the most anxiety. However, I can tell you that without Oracea, which I take daily, my eyes were so much worse. Oracea moved me from that everyday uncomfortable stinging eyes and swollen eyelids, to just a nuisance. It may really help you.

                      I see Dr Latkany, whom Brady mentioned. In my case, he advised NOT to do warm compresses, as he said my main problem was too many/inflamed vessels around my eye, which become more aggravated by the heat. My clogged glands are not such an issue. He advised, instead, that I do cool compresses twice a day. We have also discussed Restasis, which he said works well in some people with ocular rosacea, but we decided to hold off on it for now, since my symptoms are stable. He said once you start it, it is a long-term treatment. Basically, we are keeping it in our back pocket for later.

                      So, you have options. If you are in the New York area, I would recommend Dr Latkany. He is the first ophthalmologist I have seen who is knowledgeable about ocular rosacea.

                      Good luck, Alyssa
                      Hi Alyssa (and anyone else reading this!),

                      I have been going through many of the ocular rosacea symptoms you described. It's been ongoing (and progressing) for two years now. This is probably needless to say, but it's been frustrating, depressing and scary. Since this past May, I've had increased dryness (which has been categorized as "moderate to severe") but it mostly happens at night. My eyelids always swell at night, but it's usually just my left. It swells up so much that it's actually difficult to open--though, I can't tell if that's the dryness or the swelling. Over the last two weeks I have had to get up in the night on average of 4x just to put in artificial tears.

                      Just last week (after seeing 9 different eye specialists over the last year and a half), I was finally diagnosed by an eyelid specialist with ocular rosacea. On one hand, I'm relieved that I can finally give this chronic hell a name, on the other, I'm still feeling so much anxiety over it (and go figure that stress is one of the triggers). The doc prescribed me 20mgs daily of doxycycline hyclate. He says it will help reverse some of the damage that's been done, and that it will really help get my ocular symptoms under control. He has prescribed it for 6 months. I have not yet started taking it because I'm super paranoid about possible side effects.

                      From my understanding, it's pretty similar to the Oracea that your'e currently taking. So my question is, have you experienced any side effects? How long have you been on it? When you say that your eyes are more of a minor annoyance now, what exactly does that mean? I'm so nervous, but at this point, I'm willing to do almost anything (within reason) to make this swelling and dryness go away. It's really been a huge hit to my self-esteem, so badly that I think it's actually making me depressed (which isn't something I have a history with).

                      Any advice, recommendations or encouraging words will be greatly appreciated. Thanks in advance

                      Comment


                      • #12
                        Originally posted by janedw View Post
                        Hi Alyssa (and anyone else reading this!),

                        I have been going through many of the ocular rosacea symptoms you described. It's been ongoing (and progressing) for two years now. This is probably needless to say, but it's been frustrating, depressing and scary. Since this past May, I've had increased dryness (which has been categorized as "moderate to severe") but it mostly happens at night. My eyelids always swell at night, but it's usually just my left. It swells up so much that it's actually difficult to open--though, I can't tell if that's the dryness or the swelling. Over the last two weeks I have had to get up in the night on average of 4x just to put in artificial tears.

                        Just last week (after seeing 9 different eye specialists over the last year and a half), I was finally diagnosed by an eyelid specialist with ocular rosacea. On one hand, I'm relieved that I can finally give this chronic hell a name, on the other, I'm still feeling so much anxiety over it (and go figure that stress is one of the triggers). The doc prescribed me 20mgs daily of doxycycline hyclate. He says it will help reverse some of the damage that's been done, and that it will really help get my ocular symptoms under control. He has prescribed it for 6 months. I have not yet started taking it because I'm super paranoid about possible side effects.

                        From my understanding, it's pretty similar to the Oracea that your'e currently taking. So my question is, have you experienced any side effects? How long have you been on it? When you say that your eyes are more of a minor annoyance now, what exactly does that mean? I'm so nervous, but at this point, I'm willing to do almost anything (within reason) to make this swelling and dryness go away. It's really been a huge hit to my self-esteem, so badly that I think it's actually making me depressed (which isn't something I have a history with).

                        Any advice, recommendations or encouraging words will be greatly appreciated. Thanks in advance
                        Just my opinion janedw; Speaking from experience the reason why people don't experience much improvement is because sufferers are receiving the wrong treatment.
                        Ocular rosacea is the end effect of a process that was initiated in days previous before, and this initial reaction is what needs to be controlled, as is with rosacea itself.

                        Why you have this condition is because the glands in your eyes or skin are not secreting normally due to a faulty or missing signal.

                        No eye specialist will tell you that, and all they can do is nurse this condition.

                        Every time you eat fat and or acid foods/drinks you create a signal which causes your skin/eyes to secrete, in normal folks it results in full complete secretion but in your case you only get varying degrees of secretion.

                        This situation is due to a fault in the sympathetic nervous system.

                        The more fat you eat or acid food the worse you ocular becomes.
                        cure

                        Comment

                        Working...
                        X