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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    My arsenal thus far

    It is called a brain freeze & you can search for it. Like most everything here it is backed by citizen science.
  2. Brain on fire

    My arsenal thus far

    Oh, get out into the sun as much as possible. I can't take the D regimen & keep my D up via lots of exposure (it feels good too). Sun light also improves mood.
  3. @xBoss looking forward to your report. Your daughter move to Germany yet (lol couldn't help myself).
  4. Brain on fire

    My arsenal thus far

    @kat_92 I see you've been reading Way to go! Some folks put their feet in hot water & are able to abort an attack. Some folks stick their heads in the freezer or near an a/c vent & inhaling the cold air helps. You can look at 'buster friendly treatments' lots of info there. I see hope in your post & I'm smiling
  5. @CHfather you so rock! Yes it can be used with mask or tube. I would probably have to have tried oxygen standing on my head hyperventilating from a garbage bag to justify the cost lol
  6. Apologies, I suck at links. You can use the magnifying glass to search for demand valves. @CHfather will be along with answwrs & links. He is very good, takes a lot of his time & we love him.
  7. You are welcome dear (no offense meant, I'm Southern). A demand valve is oxygen on demand-breathe in (through the mouth) you breath oxygen (no mask required). You can also use the cluster mask without the mask by breathing through the tube. Some prefer the cluster mask, some prefer cheap masks, some take the mask off to exhale, some use the tube or demand valve without the mask. You'll find what works best for you, just give it some time & continue to ask for input.
  8. @CHfather is right on top of things. @kat_92 one full blown hit will not ruin your life anymore than the 1000s (argh math disorder!)... Almost 2 years with 3 full blown kip 9 (kip 10 in under 5 mins) did mine. It will impact your life, but you have good things in your life to concentrate on between. As one member says 'life is what happens between headaches'.
  9. Hang in here with us Kat, it'll work out & we'll help as much as possible. Insurance didn't cover mine.
  10. Kat you can buy regulators that go higher online, even without an Rx. You can also buy demand valves, expensive but save a bunch of oxygen.
  11. After I received my 25lpm regulator I got a dolly that carries 2 E tanks, connected the 15lpm regulator to 1 & the 25lpm regulator to the 2nd. If I ran 1 dry the 2nd was ready, though at a lower flow. Beat blindly fumbling around mid-hit (kip 9 zoom to kip 10)/mid-slapback (pains in the arse too) trying to connect the 25lpm.
  12. Brain on fire

    2019 Conference how is/was it?

    Hey @Into Light Southeastern US, looks like I might be able to attend in 2021, 2022 or 2023. Sometime in the next 3 years (after Chicago) it may be closer to my neck of the woods.
  13. Brain on fire

    2020 Conference

    Ok, maybe 2021, 2022 or 2023.
  14. Brain on fire

    No medication

    Oh, ok. I thought since it was specifically for CH if might have been ketamine. Never heard of sinus plumber. Anyone else?
  15. Brain on fire

    2019 Conference how is/was it?

    Maybe 2021 will be a bit closer & I'll be able to go then.
  16. Brain on fire

    2020 Conference

    So, apparently Chicago. Again... Maybe 2021.
  17. Brain on fire

    No medication

    @LKD06 Curious, What nasal spray specifically for CH are you taking?
  18. Brain on fire

    No medication

    For a very long time I was in denial & on no meds. I was chronic. Couldn't take Verapamil, prednisone & couldn't afford oxygen. Then got Sumatriptan (Imitrex) injections & found these fine folks. I was able to get oxygen & the treatment methods here got me to painfree. I only take occasional preventive doses to stay pain free now.
  19. Brain on fire

    The alcohol test

    They can be. Correct me if I'm wrong from reading your previous posts.... Haven't all of your 'hits' been shadows?
  20. Brain on fire

    Here's a beer to avoid

    Anyone have one at the conference?
  21. Brain on fire

    The alcohol test

    In the meantime you can use the magnifying glass & search beer, alcohol etc & get lots of results from lots of folks.
  22. Brain on fire

    The alcohol test

    Ok, a 3 year break means (up to this point) you are Episodic. Of course that can change, the Beast likes change. Beer test & the potential consequences are an individual choice. How much pain is a beer worth? Perhaps @enli will chime in with personal beer test results.
  23. Brain on fire

    The alcohol test

    Hey kat_92, the 'beer test' can be a big reveal. Pardon, memory fails me. Are you Episodic or Chronic?
  24. Brain on fire

    Question about prednisone

    Careful with the steroids, they can trigger psychosis.
  25. Brain on fire

    2019 Conference how is/was it?

    Awesome! Hugs & safe fab conference to all attending. The forum awaits everyone's reports with baited breath.
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