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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Anyone tried Wim Holf's method for CH?

    My vitamin D has always tested just fine & I still had CH.
  2. Brain on fire

    Quercetin! Very effective treatment for me!

    Please, thoroughly research and check your sources carefully. "natural supplements" and "vitamins" are not "totally safe" or "non toxic". People can easily have complications when taken without a full medical history, labs & medical supervision. For example, I can't take vitamin D, Calcium or Niacin. The later would kill me, it is toxic to my body. I know a young person who was injected with 2 million units of Vitamin D by 'a very helpful knowledgeable' person in September of 2019. It was not an MD, the person had no medical history for the person injected & no labs had been done. That young person was away from home attending a conference, has spent very little time out of the hospital since and the long term effects are unknown.
  3. Brain on fire

    BOF

    Still laughing!
  4. Brain on fire

    BOF

    Discovered why & quick check of my profile saw my research was noticed. That IS funny!
  5. Brain on fire

    BOF

    I thought briefly it was the math learning disorder. Nope 2+2=2 & the numbers don't add up. 624, number 4 on the All Time has just over 300. Oh well. Signing off.
  6. Brain on fire

    CHfather

    You are missed. Get well soon! ((((((Hugs)))))
  7. Brain on fire

    Smile

    For anyone who needs one. If you have one to share. Please share it.
  8. Brain on fire

    BOF

    I'll heal from all of it, it is what I do. It is what we all need to keep in mind. There is hope, there is healing, there is love. We could use more of the later.
  9. Brain on fire

    BOF

    Thanks @Tony Only & @devonrex. I'm visual, I used the All Time Leader Board (and other Leader Boards here) as a quick tool. For me it isn't about competition at all, it just helps me to see it. I hope that is understandable. Apologies if it isn't, my current pain level makes it difficult for me to do a lot of things. @spiny I had been 4th on that one, I'm not on it at all now.
  10. Brain on fire

    BOF

    Thanks @MoxieGirl Could someone post how I was bumped?
  11. Brain on fire

    Smile

    Bumping posts from those who need help is mean. The post returned under another completely unrelated topic with links added this morning. We are on to you @bee0101 @sn0wh0p
  12. Brain on fire

    Influenza and CH

    Forum is about cluster headaches, healing the spirit world & links to videos about addiction bump posts from people needing help. A post has been removed & the video now shows up here. We know about the efforts to decriminalize & we know where this is coming from @bee0101 @sn0wh0p (restricted member). See the awkward similarity on the posts about Melatonin by both, the date @sn0wh0p last vistited is the same date @bee0101 joined, soon after straight to @sn0wh0p profile.
  13. Brain on fire

    BOF

    Last night was my worst since the surgery. This evening I gave myself permission to have a bad day & cried for myself for the first time since my husband's death. I am unsure if I'll be able to continue contributing here as my visual tool for gauging if I am being helpful, The All Time Leader Board has rolled me completely off
  14. Brain on fire

    Anyone else having this oxygen issue?

    Oxygen can dry out your sinuses. If it is a problem you can add a humidifier (bubbler) to your oxygen rig.
  15. Brain on fire

    Influenza and CH

    ?Psyclobin? Haven't heard of it. If you meant psilocybin (and LSD 25), neither are available by prescription in the US & LSD 25 isn't available by prescription anywhere.
  16. Brain on fire

    Smile

    Apparently there was some agreement as the post here has been deleted.
  17. Brain on fire

    BOF

    Thanks for asking!! I'm coming along. The pain is pretty bad. I continue to resist meds for it. Last night I decided I needed to go for a drive (tough pain day). I surprised myself. I drove around for a couple of hours with my music playing loudly. Periodically punching my accelerator. Few on the roads I traveled. I know those roads & their nuances well enough to safely fly. It felt good to drive, it felt great to fly! First time I've driven (or been in my car) since the surgery. I'll tell my PT guy & nurses when they come Monday, hoping they don't beat me to a pulp
  18. I really hope this works out similar to the way Peer Support in the Mental Health field did. Paid full time positions (I was already employed, on the speakers bureau & taught the curriculum).
  19. Brain on fire

    Insurance coverage for Oxygen

    I love it when the house here rocks with high quality info.
  20. Brain on fire

    Smile

    I dunno but kinda odd the way the dates, names & this one's peaks at Sn0w's profile jive.
  21. Brain on fire

    Horses with cluster headaches

    At least they don't euthanize humans for CH or TN.
  22. Brain on fire

    Officially re-diagnosed: CH -> Paroxysmal hemicrania

    @Siegfried hang in here with us. So sorry you have such difficult times. We'll all get through. PS: Busting worked for my chronic CH.
  23. Brain on fire

    BOF

    Interesting week, wanted to ship me off to a nursing home late last week, friends whisked us out of here. Helps he is an atty & has been quadriplegic for over 20yrs. Back home now, was told I'd never dance again. So, I blew PT away yesterday. Today was the last day of the top portion of my custom fitted body cast. Still have the bottom, braces on both hands, various durable medical equipment & at least one more major surgery followed by more intense PT. My spirits are high & I remain Chronic Cluster Headache pain free. Love & pain free wishes to all!
  24. Brain on fire

    Smile

    Sounds similar to a restricted members posts, who last visited the very day the above poster joined & had a similar user name. Was that a Sn0w flake?
  25. Brain on fire

    Horses with cluster headaches

    Oh that is just sad https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6330979/
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