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Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Thank you for your Service

    and sacrifices. Apologies I'm a bit early, I have many to thank tomorrow.
  2. 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.
  3. 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).
  4. 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.
  5. 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.
  6. How is this relevant to cluster headaches?
  7. 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.
  8. 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.
  9. Brain on fire

    Oxygen usage

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

    New to the group - some observations

    Venting frustration is welcome. Sharing your story is also always welcomed.
  11. Brain on fire

    introducing my friend who just registered for the board

    Welcome @spikeinthehead
  12. Brain on fire

    Oxygen usage

    Use your oxygen to abort (get on it at the 1st sign) & stay of for about 5mins after you have aborted the attack. Speaking for myself & everthing I've read here a 10/10 is harder for most to abort. You'll find the techniques that work best for you. Many will slam down an energy shot on the way to the oxygen to decrease the time it takes to abort. Ask lots of questions & we'll do our best to assist. Welcome to the life changing benefits of having oxygen!
  13. Brain on fire

    Happy 10th Birthday to our forum!!

    Pin it!
  14. Brain on fire

    Post op. Wisdom teeth surgery

    No straws for the smoothies, wouldn't want to create probs.
  15. Brain on fire

    Does anyone else experience this?

    Welcome Lady Graham, the term cluster migraines is often used by docs who know little about cluster headaches. Based on your user name I'm guessing you are female. Females with cluster headaches are often misdiagnosed with migraines. All thr more reason to avoid using the term 'cluster migraines'.
  16. Brain on fire

    Does anyone else experience this?

    Amazing how ch can differ. My attacks began with Kip zero (not having an attack) chronic this was every night/morning: 11pm sound asleep: 11:30pm Kip 9, 5 mins max till it hit Kip 10. 2:30am done Kip zero sleep for 30mins: 3am Kip 9, 5 mins max till it hit Kip 10. 5:30am done Kip zero sleep 30mins: 6am Kip 9, 5 mins max till it hit Kip 10. 6:15am (*in low cycle) done Kip zero time to start the day. *In high cycle the last began exactly the same but ended at 6:45am Kip zero time to start the day. The only daytime attacks I've had were during high cycle & always from no pain to 'Is this the one that will kill me?'. Glad I found clusterbusters is an understatement.***All of that was untreated***
  17. Brain on fire

    Cluster headache and GCA involving arteries

    Welcome Lou, we have members who have migraines, I'm sure they'll chime in. Things sound just awful for your mom. She is fortunate to have a strong supporter. I'm not familiar with her diagnosis. Perhaps other members are. In the meantime, hang in there.
  18. Brain on fire

    Question about fatigue

    Thanks spiny, my bad for posting it in the general forum.
  19. Brain on fire

    New here and super happy to be here

    Also beware Sumatriptan can increase frequency etc.
  20. Brain on fire


    Big shout out for a fast and speedy full recovery to our beloved Freud. We miss you! Get well soon! xoxoxoxoxo
  21. Brain on fire


    Welcome home!
  22. Brain on fire

    Emgality for episodic

    If it works for you, please tell us, if it doesn't please tell us.
  23. Brain on fire

    Let's get together

    East coast. Not a conference (The conference will come to the East Coast) just a laid back, come as you are 'Meet me at Joe's' kinda thing. If you can stay 1 day, cool. If you can stay 2, cool. If you need to camp at a State Park, cool. If you want to go crabbing & boil those babies up at a campsite, maybe several can pitch in & book camp sites. I'll be off the forum for a bit, but looking forward to thoughts & ideas.
  24. Brain on fire

    Let's get together

    Any news? Anywhere?