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Into Light

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  1. Into Light

    I don’t remember if i thanked you. Thank you. I’m actually at the point, because of nearly constant shadows to say F it and I’ll find out how well all me meds play together just like a true alchemist. Just do it and see what happens.

     

    1. Pebblesthecorgi

      Pebblesthecorgi

      I know how it feels to desperately find solutions.  One should be very careful throwing shit against the wall to see what sticks.  Its best to apply a thoughtful measured approach if at all possible.  Best to you

       

    2. Into Light

      Into Light

      Thank you. I've discussed everything with all my doctors.

      I am in uncharted waters; I worked as a reasonably successful 3D computer illustrator selling Big Pharma to specialized ad agencies. I illustrated mechanism of action. I've read plenty of research papers in order sell new drugs visually as still images to Big Pharma via well-funded specialized ad agencies.. A peer-reviewed journal paper with clinical studies would be great. Considering the likely projected RoI, I'll bet that one would require major magic to get funded.

      I pray for the day. In the long run, I'd rather take my usual all-in approach.

    3. Into Light

      Into Light

      I'm also in possession of a 25lpm regulator but it's not enough O2. So off I go to find a medical demand regulator. And on 480mg Verapamil/ day rx. I have oral rizatriptan but it's pretty much a joke. My response to Sumatriptan is vile for days and I've had 2 hours of KIP 10 2 nights in a row, after said triptan.

       

      Mostly, the shadows are they are debilitating year-round.

      So I'm being a bit more aggressive.

  2. Into Light
    Boatman, I don’t know how else to describe the experience when I am not in the spring and fall intense ch attacks. I have ongoing 1-2 level pain the rest of the year; they are often accompanied by the ancillary symptoms of running nose and tearing/drooping eye. All right side. They, as mild as they seem leave me mentally incapacitated even if they stop for a while.. so that’s what I call mild chronic CH with episodic attacks much more painful.. Right now, my pain level is barely a 1, but my right nostril is running. i hope that clarifies. I was wondering if anybody ellse has experienced this.
  3. Into Light
    Thank you. I have read some of the journal articles. For me, the 15 Lpm gave me about 1/3 of an in-breath before maxing out. I will try the reduction in flow over time.
  4. Into Light
    Thank you.I am just excited to have found, through a link someone to buy my own regulator.. I will definitely try that.
  5. Into Light

    Shadows

    Into Light replied to jh's topic in General Board

    I live with Episodic attacks in Spring and Fall, and then nearly constant ‘“mild CH” and shadows for the rest of the year. what fun we have! (JK) jonathan
  6. Into Light
    I just ordered the 0-25 Lpm for M tanks from the provided link. hopefully, this will do the trick. At $54, it’s worth a try. jonathan
  7. Into Light
    I’m fine on the tanks; Apria is responsive. I just haven’t been able to track down a high-flow regulator. But may have that covered; I have to hunt through the emails, and haven't felt up to it.
  8. Into Light
    I’m in FL. Apria are great on delivery. If I don’t mind waiting on hold. I have two M-tanks and the first is moving into the red zone. I’m episodic spring and fall, and am on 480mg of verapamil which mitigates the pain levels to max out at around 7 or so. I don’t know if it’s true for others, but then I move into a chronic “mild CH” mode. No matter what time of the year I suffer from an inability to think clearly and follow through on projects. the 15/lpm reg from Apria doesn’t deliver what I need, unless I hold my breath until the 3-liter bag on the Optimask fills, but I still suck that empty in about 1/3 of an inhalation. I didn’t see anything for me on Amazon, but,I had correspondence with a lovely woman at (?) Linde who undertook the effort to find me one source for the very high-flow regulator.
  9. Into Light
    The 15/lpm regulator is the only one Apria says it delivers. I have been trying for months to get a high-flow regulator and may have found only one source for a 60/lpm and none for demand valve.
  10. Into Light
    Thank yo,u, DD! I just recemtly found ClusterBusters. Community is so important ifor me. We are so few in ratio to those who have never met The Beast.
  11. Into Light
    Will i get a registration opportunity email?
  12. Into Light
    Not so much on the answers. How did it go?
  13. Into Light
    When will attendance opportunities become available, please? Newbie here. Not a CH newbie.
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