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Thread: Nothing Works

  1. #11
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    Quote Originally Posted by laser_cat View Post
    Angela - I know this isn't directed at me but thought i'd throw my 2 cents in anyway. Although I have been diagnosed with neurogenic rosacea, my vasculature is or was totally destabilized. I thought if I researched the best laser docs etc, then going that route would be bound to at least be partially helpful. I noticed that newish derms said "why not" type of thing, and were willing to try. Meanwhile 3 well-established derms did caution against it. I thought it was my only option though, and i regret doing the 3-4 excel v's / v beam's. I believe they did permanent damage + I wasted time and $.

    I think if you are below a threshold, you might be helped, but one (young) derm said the goal is 50% at best but just realistically the goal is less the more severe the flusher is. My observation is that the more severe the flushing is, the more risky it is and more it might actually backfire. Because I think there is something unknown and likely patient-dependent driving these extreme flushing reactions that goes beyond "too many blood vessels" etc (eg I have a vascular compression of the trigeminal nerve on my worse side)

    If I were you I'd try (since vasoactives aren't working for you): lidocaine iv, mexiletine (ramp up very slowly), possibly other sodium channel blockers (sodium channel blockers will stabilize the overactive sensory nerves - the heat/pain sensing nerves - in theory), medical marijuana (the THC helps to stabilize those sensory nerves in a different way, but is very vasodilating, so titrate very slowly!), gabapentin, cymbalta, possibly clonazepam/memantine/baclofen. Mexiletine is the oral analog of lidocaine but will be a drop in the bucket (in terms of amount) compared to a lidocaine iv. The lidocaine iv is done sometimes as a test first before long term mexiletine therapy.
    When I tried THC I had a higher heat (and cold) tolerance though it was tricky with my "time of day" episodes.
    If you are willing to fly to doctors in California I could suggest some of the best ones I've seen.
    Ive never had permanent damage from oral medication I think (though I titrate up/down very slowly).

    Ok, I think I'm over my 2 cents! I apologize for coming across as a know-it-all or what not i just wish I never did laser...

    Hope you are hanging in there.

    Lizzy, I am so appreciate for all your advice. I do not take you as a “know it all”. I will take any advice I can because I want help. I was leaning away from laser anyway because after four IPLs last summer, I believe my condition worsened. Right now, I’m sticking with LDN with fingers and toes crossed.

    I will use your list as a reference guide going further. What would Drs in California be able to do for me? Where in California?

    Thanks again Lizzy

    Angela

  2. #12
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Ange4 View Post
    What would Drs in California be able to do for me? Where in California?


    I'll PM you some doctor info, just in case (no pressure of course). The derm I'm thinking of sees difficult cases and might able to give you some guidance about medications and treatment ideas going forward. He has seen me for last 2 yrs and I definitely feel he has been hugely beneficial in his guidance.

    I also see Stanford pain - who is known for doing outpatient (1 hr) but also inpatient (5-7 day) lidocaine and ketamine iv's for chronic pain issues. People fly to them from all over for the inpatient treatment. I have been impressed with some of the doctors I've seen there (very sharp thinkers).

    These options might be more worthwhile after you've trialled some more medications. Just don't want you to think laser is the only option!

    (again no pressure)

  3. #13
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    Quote Originally Posted by laser_cat View Post
    I'll PM you some doctor info, just in case (no pressure of course). The derm I'm thinking of sees difficult cases and might able to give you some guidance about medications and treatment ideas going forward. He has seen me for last 2 yrs and I definitely feel he has been hugely beneficial in his guidance.

    I also see Stanford pain - who is known for doing outpatient (1 hr) but also inpatient (5-7 day) lidocaine and ketamine iv's for chronic pain issues. People fly to them from all over for the inpatient treatment. I have been impressed with some of the doctors I've seen there (very sharp thinkers).

    These options might be more worthwhile after you've trialled some more medications. Just don't want you to think laser is the only option!

    (again no pressure)

    Thanks again Lizzy for being so helpful in this horrible condition.

    Angela

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