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Thread: neurogenic rosacea -- my battle.

  1. #41
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Andrew P View Post
    How would you explain the timed flare? What are your symptoms before a flare?

    What's your current medications?

    Just curious.

    Sent from my WAS-LX1A using Tapatalk
    Timed flare - doesn't matter where I am, what I've eaten, etc. I think in the evening, it's just when the body naturally relaxes to go to bed so there is some natural vasodilation that happens in everyone. Also pain can also "naturally" be more pronounced at night. I don't know if anyone really knows why exactly, but I'm guessing in my case the small fibers (nerves) are damaged, which control the blood vessel constriction / dilation, and so sometimes the switch between sympathetic nervous system (when blood vessels are constricted) and parasympathetic (when blood vessels are dilated) is more exaggerated. Sorry I am not more helpful.

    I can be totally fine right before a flare, eg evening. However, usually there is always some sort of tingling / baseline nerve activity going on -- I would be able to live with this though, it's the insane pounding, burning, etc that is hard to cope with and makes me want to stop whatever Im doing to soothe it.

    Current medications - a bit of a moving target. I take cymbalta 80 mg and mirtazapine 22.5 mg at night. IVIG every month (to see if there is inflammatory contribution, so far not helpful). Botox every 3 months. Trying to find an oral sodium channel blocker (or combo) that works for me, since I do respond to lidocaine iv, and (positive) response to lidocaine iv (for neuropathic pain) strongly predicts (positive) response to oral sodium channel blockers. So I'm hoping to have an anti-arrhythmia sodium channel blocker + an anti-seizure sodium channel blocker in the future, but am currently playing around with dose / different ones. If I can't find an oral sodium channel blocker(s) I can tolerate + that works for me, then maybe periodic lidocaine iv's.

    HTH
    Last edited by laser_cat; 6th December 2018 at 06:02 PM.

  2. #42
    Senior Member ladycappuccino's Avatar
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    Lizzy,
    You are my hero. It is absolutely wonderful to follow your journey!
    I will start with LDN. If it doesn't help, I will try Lyrica.
    I hope that LDN will assist me in my battle against Hashimoto and - as a nice side effect - will knock this neuropathic face pain down.

    Take care and keep us posted!
    Lena

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