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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Question about prednisone

    Careful with the steroids, they can trigger psychosis.
  2. Starts today folks! Keep us posted.
  3. 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.
  4. Brain on fire

    2019 Conference how is/was it?

    @dmlonghorn have you guys made it?
  5. Brain on fire

    Question about prednisone

    Every time I read about Prednisone I'm a little bit happier I can't take steroids of any kind & found this site.
  6. Brain on fire

    2019 Conference how is/was it?

    Hey DD! Shall I send my kayak? It is after 8 here & I am tempting the beast for the 1st time with my 1st alcoholic beverage in over 2 years. I'll take a cool swig & say a quick pre-filming prayer for ya.
  7. Brain on fire

    2020 Conference

    Oooo Tampa, a sail and the conference! The only location that might be better would be Tortolla with a meet & greet at Bomba's Shack (sans hurricanes).
  8. Brain on fire

    2020 Conference

    California is the other side of the World, 4 times or so in Chicago/Rosemont, twice in Texas, Denver, Portland Oregon, Nashville. How about we switch the Coast? Maybe Atlanta? Florida would be nice except for hurricane season.
  9. Quick reminder, pleaae share on the forum so those who cannot attend can learn. Thanks in advance and have a wonderful conference!
  10. Brain on fire

    Shame?

    Many people with our Trigeminal Autonomic Cephalgia a.k.a. cluster headaches do feel shame. Some hide it from the people closest to them. Granted we didn't chose to get them, though some of us choose to hide them. I think this is because they aren't just headaches, we want people to view us as who we are & not by what we have. An attack is ugly to the person having it. It makes sense for it to be frightening to someone who knows nothing about it. Guilt/shame isn't always a choice. If you have depression it usually comes packed full of it.
  11. Brain on fire

    Quick update

    Fantastic news! So happy you are getting your life back (& going to the conference)!
  12. 2020 is upon us, the Medicare Part D drug coverage gap did not go away as promised it increases again. Oxygen is still a NO for cluster headaches. Time for us & those who care to barrage our reps & CMS with calls, letters etc.
  13. Brain on fire

    Emgality for episodic

    Looking forward to good news for you @Freud
  14. Brain on fire

    Surgery while taking Verapamil

    Ouch! Best wishes for a speedy full recovery.
  15. Hey @Ken'sHead don't forget to bring your regulator & mask.
  16. Brain on fire

    Need to vent about something I saw on reddit

    @Dana129 I wish you didn't worry so much. My chronic cluster headaches began without warning. Three every night, all kip 10s. When I saw the videos, I was in auch a state of denial 'not me'. Well it was me that accidentally shoved my head through the wall, bruised my body terribly but didn't notice till the next day etc. I had the 'fear' of attacks only briefly because they were coming & I had nothing to stop them back then, fear soon became pointless. Look at me now, pain free sleeping through most nights. I still have Complex Chronic PTSD (unrelated to cluster headaches) and the treatment is helping that too. See? Hope is all over this forum! Edited to add: If they ever return, I know how to stop them.
  17. Brain on fire

    Energy drinks

    Hey kat_92, you can read a good bit about my treatment under my topic 'Bust Update'. You can use the magnifying glass to search for it (or anything else) I found it a very helpful easy to use tool.
  18. Brain on fire

    Melatonin and clusters

    My dear it seems a good headache specialist & accurate diagnosis is over due.
  19. Brain on fire

    Energy drinks

    @FunTimes well said. Wecome Terri (and partner). I am a former sufferer of chronic cluster headaches, 3 every single night. I am a former sufferer because I found this site and using the methods here am now living pain free. Read, ask, encourage your partner to join us.
  20. Brain on fire

    New, English and Confused .

    I see jon019 also has expierence with insurance appeals. I have as well. Good advice & recommendations here.
  21. Brain on fire

    Open letter to major chemical companies (BOL-148)

    @CJW thanks for sharing. Interesting Compass has not signed (sorry paste failed) 'The Statement on Open Science and Open....' Also interesting intellectual property was gained under non-profit status but transferred to their for profit. Appears there are a whole lot of snakes in the Compass Pathways pit.
  22. Brain on fire

    New to the group and suffering

    Hi Willy, not much to add... This group changed my life. Welcome aboard.
  23. Conference starts in less than 2 weeks! If you've never been & can go please do!
  24. Brain on fire

    Ear Infections and Cluster Headaches

    Never had an ear infection. Looking forward to your report @xBoss
  25. Brain on fire

    D3 injection

    Welcome Ali, good question. Replies from more knowledgeable members regarding D3 will come soon.
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