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Newly diagnosed and struggling with Ocular Rosacea

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  • Newly diagnosed and struggling with Ocular Rosacea

    Hi, I am a 36 year old female who's in great physical shape and has never had a major illness or needed consistent medical intervention. I'm a new member here though I've been reading this forum for a little over a month. A series of unfortunate events led to my first rosacea flare this past December (concussion, stress, food with cayenne pepper in it). The eye symptoms quickly followed and though I've gotten my facial rosacea under control without medications (besides nightly flushing which I can't seem to do anything about), I can't get the blepharitis/MGD and resulting dry eye in a manageable state. I am on my second round of Azasite which seems to have stopped working for my left eye and I'm headed to my opthamologist yet again to advise but I'm concerned that the next step is systemic antibiotics. I took Oracea for 20 days when first diagnosed but came down with horrible aching joints and promptly stopped. I also have Reynaud's (I only recently learned) which led to being tested for autoimmunes (all negative), as an aside. My husband and I were going to try to conceive this summer which is another reason I am leary of going on doxy. I'm seeing Dr. Safran in NJ (one of the few Ops doing tests for Demodex and treating) this Friday but I'm not that hopeful. As elegant and simple as a Demodex explanation seems, its also probably a stretch for most of us. I'm sadly guessing the only thing for me is a life of on again/off again anti-biotics, even given my intolerance to them. I'll add that I have been religious with the occusoft scrubs, warm compresses, sunglasses, cool compresses and everything else in the way of home care. I read a lot of posts from people who seem to be managing their ocular symptoms just fine and I'm trying to gleen some wisdom here. I never had any eye problems (20/20 vision) though I did get bouts of swollen itchy eyelids that I used to attribute to an allergy to my mascara (now I know it was mild bleph). I would just stop using the mascara, throw it out and everything would be fine. Now, it's like I've got the worst eyes ever and it just seems to have come out of nowhere, a progression of 0 to 90 in a couple months. I know that's how Rosacea often presents but it's just so demoralizing, any suggestions would be appreciated.

  • #2
    ear symptoms also

    One thing to add.. my left ear has fluid in it (I know because of the popping.. no pain, just popping) and I have been getting inner ear myoclonus (an spasm/twitching of the tiny muscle in the inner ear). I am guessing and it kind of feels like my left eye is draining fluid into my inner ear and causing the spasm. My op thinks its all just part of general irritation. I've also got intermittant eye twitching of the upper left eyelid. Again it's the left eye that's problematic. Ugh.

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    • #3
      Hi and welcome to the forum

      It seems like you have done your reading and so I am not sure what other advice I can offer you.

      Have you seen this link?
      http://rosacea-research.org/wiki/ind...Ocular_Rosacea

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      • #4
        Ok, thank you.

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        • #5
          Hi. A lot of my problems seemed to start with irritated eyes-- I think an indication of my lowered immunity. Then I got cpn (chlamydia pneumoniae) and I had the same ear popping, numbness, and eye twitching you described. My husband also had the bug and now experiences the same ear numbness, eye twitch seasonally so he thinks it is triggered by allergies. He is seeing an ENT for it but so far I don't think has been treated. My attempts to treat the ear symptoms (antibiotics and prednisone) landed me in bed with bad neurological symptoms for 4 months. Since partially recovering, I've treated my eyes with baby shampoo eye wash twice a day and oral evening primrose oil. Irritation is 98% better-- I can even wear mascara now, but I still get tiny pimple like cysts on the eyelid edge occasionally. They may be related to consuming a trigger food-- I can't rule that out-- but I suspect they come on after I have been outside in pollen and dust. Anyway, I just wanted to mention the cpn because it struck me as strange that your symptoms are similar. Have you ever been tested for exposure to it? Have you been tested for any vitamin deficiencies? Many rosaceans find they have digestive problems or imbalances that seem to be driving the rosacea symptoms.

          I am guessing you have blue eyes. I do and I also have Reynaud's. Sorry to not be of more help. Good luck on your journey to rid yourself of this crummy eye affliction.

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