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Brain on fire

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Everything posted by Brain on fire

  1. All the slobbering, the runny nose & eye would keep hair & make-up on their toes too.
  2. Studios go from ice cold to blazing hot as soon as they turn the lights on, filming on location is a whole different ball game. I can see me now (before controlled)... Cut cut cut, cut the lights & bring my oxygen now!
  3. Brain on fire

    Kings of pain

    Only in the States, in other Countries they use a Soccer ball, rarely stop, wear little protection & no helmets.
  4. Brain on fire

    Let me introduce myself

    35 years without oxygen, even with your 2015 to recent remission that is awful, oxygen will change your life!
  5. Brain on fire

    Non prescription Abortives

    Brain freeze is free & worth a shot. Fail for me, but that's just me.
  6. Brain on fire

    A little help from my friends

    Perfect time to bump this thread!
  7. Brain on fire

    What if there WAS a CURE?

    @dmlonghorn would that make it a 'pryamid cure'? Bwhaaaaa! ROFLMAO! The OP suspected knowlege of the cause for 16 years, waited... & is pain free barely over 1 year. Unimpressed by a less than 2 year remission, the OPs requirement for recognition prior to sharing the "cure" & if a book appears on Amazon for $1, I won't buy it. It won't give the name of the "cure" without purchase.
  8. Brain on fire

    Prednisone Not Working

    @Jlands prednisone has stopped working for other's & CH is known to change. For more on prednisone you can use the magnifying glass to search for it. Best to you!
  9. Brain on fire

    What if there WAS a CURE?

    This is why you will see skepticism. Brand new member on your 1st post... You have oxygen for sale, you know the cause of CH, "cured" yourself & shared nothing about "cause" or "cure".
  10. Brain on fire

    anyone else entering fall cycle?

    Hey @81007 your ch is chronic (from your posts) maybe this is your high cycle. If the Imitrex (Sumatriptan) didn't work for me, I'd be questioning if my diagnosis of CH was accurate. Same goes for oxygen, both work well for most with classic CH. Many find the ER a waste of time, that said... What did the ER do for you? I take it your toxo-plasmosis therory was proved incorrect by that med trial. Ok, then I read you had a 2 month remission caused by your folic acid overdose & am confused as to whether you are episodic, chronic & why you had indomethicin to take.
  11. Brain on fire

    Cycle finally over

    Kat that is a delight to read. I couldn't be happier for you! Wait... I could... for your next wonderful post telling us the dread has lifted I only dreaded mine briefly (was chronic) & found the dread a waste of the little pain free time I had. As Moxie says 'Life is what happens between headaches.' You go live it!
  12. Brain on fire

    Cycle finally over

    Hey Kat, glad it ended. Are you doing anything to prevent your next cycle?
  13. Brain on fire


    Great to see you back @Freud sorry you are getting hit.
  14. Brain on fire

    Emgality Shot for Episodic Clusters

    Hi @S.E. I was chronic & now use no pharmaceutical treatments, I simply bust periodically to remain pain free. My story differs from many. I could not take D3, Verapamil, Prednisone etc. Imitrex injections just made things worse so I used only oxygen until the CCH was busted.
  15. Brain on fire

    Thank you for your Service

    and sacrifices. Apologies I'm a bit early, I have many to thank tomorrow.
  16. Brain on fire

    Thank you for your Service

    I haven't been, I'd like to one day.
  17. Brain on fire

    Thank you for your Service

    Bill Holley+. Like many his name didn't go on the Vietnam Memorial Wall but his service during the war/conflict/police action/military aide to South Vietnam killed him.
  18. Brain on fire

    02 mask

    The Cluster O2 kit CHfather references in your topic titled 'CO2'. The link is included in the New Users-Read Here First blue banner. Edited for correction: The link is in Basic non-busting info in the ClusterBusters Files Section (pinned at the top).
  19. Brain on fire

    4 years chronic headache/facial pain. CH and ?

    A diagnosis (sometimes a temporary differential diagnosis) is required to prescribe. From what you shared, it sounds like 'the multiple neuros and results of imaging' failed to provide the info you need to make informed treatment decisions for yourself... If you believe that is true you may want to get medical records & imaging study results. Over the years many have learned we must advocate for ourselves. I am often shocked when people take meds with no clue what active diagnoses are in thier own medical records or what (specifically) the meds are prescribed to treat.
  20. Brain on fire

    Kings of pain

    Agree with @jon019 I'll add... As the Kings,Queens, Princes & Princesses of pain, we don't need a reality show.
  21. Brain on fire

    Does Advil working mean it’s not CH?

    My 1st one I was given two morphine injections. I was wasted & groaning from the pain. I never bothered with otc or rx pain killers after that.
  22. Brain on fire

    Finding the way here

    One word. Google. If you & I have been using Google & have cleared our search histories when we search the same item Google will determine the search results. Ads take priority.
  23. Brain on fire

    Oxygen usage

    Patience, it takes time to master.
  24. Brain on fire

    New to the group - some observations

    Venting frustration is welcome. Sharing your story is also always welcomed.