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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Humanitarian

    https://m.facebook.com/photo.php?fbid=425636697647346&id=424897101054639&set=a.425636707647345&source=54&refid=13&ref=page_internal&__tn__=%2B%3D
  2. Brain on fire

    Emergency room experiences anyone?

    Most of us have visited an ER because of a cluster headache, I thought it would be interesting to share some of our stories. I went to the ER for my very first cluster headache. I'd been released 4 days prior (from another hospital) after my TBI & related inquiries. I had copies of my discharge paperwork in hand & my health buddy with me. He walked me in & dashed back out to park. This ER is like waiting in line for a return at Wal-Mart. You stand (I know!) in line far far away from the triage desk. I'm thinking my head is going to explode I'm fresh off a brain bleed & I don't think I can stand this or stand up for long. I rushed for the only wheelchair in sight, behind the triage desk & flung myself into it. Now I've done it, I broke in line. I see my health buddy making a bee line for me as quickly as the triage nurse was. She was accusatory in tone. 'Are you in pain?' I blurt head pain, acute subdural hemorrhage, subdural hematoma... I don't believe she heard the next line. Straight over for vitals.... But... A woman bursts through the ER doors, right past the line, straight to triage 'My mother chest pain!' I was politely wheeled into a corner where I sat for the next... Later my buddy told me it was 30 minutes. Triage nurse dashes for me, whips the chair around & off we go. Morphine, I'd never had it & always thought if you had pain Morphine magically made all pain disapper. The pain stayed, I was wasted. I stayed wasted (more Morphine) as they waited for my previous scans & for a slot in imaging to open up for mine. After the scan... I wasn't told the diagnoses, I read it on the discharge paperwork the next day. I was too wasted to read it or the prescription I was given. Diagnoses: Tension headache Prescription: Sorry can't recall the dose: Fioricet (12 tablets). I never had it filled. My next stop was neuro #1.
  3. Brain on fire

    Guest users. Welcome!

    Just spotted 2 bots! Spammers! Thanks Spiny! Gone now.
  4. Brain on fire

    Guest users. Welcome!

    Welcome Chadman
  5. Brain on fire

    DMSO

    I used DMSO many years ago, never for a headache. It was in every barn, veterinary clinic, sports supply store & in every athletic arena. During the years I associated with athletes who had trainers/coaches, worked for a veterinarian & in barns I only saw it used topically. I believe the NFL bought it in 55 gallon drums. It had a strong smell & extreme caution was used with it. We were told anything on our hands when we applied it & anything on the skin where it was applied entered the body with the DMSO.
  6. Brain on fire

    This helped me- hopefully will help others

    I only posted to this topic again when I saw what came up in the original poster's 2nd hand quote because misleading people who have any medical condtion that causes any person to suffer is cruel. We do not enjoy suffering. The original title included the word 'cured'. We know it is bad when admin feels the need to edit the title of a post. That is very rare & was done here. The original poster edited the original post repeatedly. Those are all red flags. I care for everyone who comes here looking for answers & offering suggestions. I enjoy seeing folks finding something that works for them, sharing it & continually updating their progress with it. Because that simply isn't what happened here I will not comment further on this thread. Best of luck to you ClusterSwarm, I hope this continues to work for you forever.
  7. Brain on fire

    This helped me- hopefully will help others

    Hmm, on page 2 of this topic I edited my comment regarding the 2nd hand testimonial the original poster provided. Whopper of an eye opener.
  8. Brain on fire

    Guest users. Welcome!

    Um, I often read ancient threads. Usually begin with the 1st post, work back to front & I stopped crawling when I was... Oh wait, I do crawl around occasionally... On the floor. I haven't crawled a mountain for awhile.
  9. Brain on fire

    Guest users. Welcome!

    By all means welcome! I've often seen over 700 users & guests on the forum.
  10. Brain on fire

    Tyramine 'cheese syndrome' interesting

    I've a drinking problem, more than 2 I'm pie eyed. Haven't had any since my CCH & sucessful busts. Bottle of homemade cherry wine gifted, I may test
  11. Brain on fire

    Emergency room experiences anyone?

    Right on Spiny! I am a female with chronic cluster headaches & sometimes feel we are fewer than the few. Thanks to clusterbusters I am treating successfully with the methods here. Wooo whoo! Rock on pain free
  12. Brain on fire

    Emergency room experiences anyone?

    Thanks Spiney, also amazing what we teach the medical field.
  13. Brain on fire

    Emergency room experiences anyone?

    Thanks for sharing Freud. Sure would like to see you get a break. Ramble on.
  14. Brain on fire

    Emergency room experiences anyone?

    Would that count as your best day in country DD?
  15. Brain on fire

    Emergency room experiences anyone?

    DD, I'd be surprised if it happened in any facility except a V.A. facility. Memory fails me... Was it you who was at hill 327 Dec of '66?
  16. Brain on fire

    This helped me- hopefully will help others

    That is why I made the suggestion, link to the thread. Shucks! Just to a comment. Ya really have to read tge whole thread for context. Edit: Link to the thread: https://clusterbusters.org/forums/topic/1765-my-theory-behind-clusters/?tab=comments#comment-22598
  17. Brain on fire

    This helped me- hopefully will help others

    I do hope folks read the post & all replies via the search, it addresses this in-depth
  18. Brain on fire

    This helped me- hopefully will help others

    Just a suggestion... I'll suggest this in a similar topic as well. Use the magnifying glass to search for histamine dump (it may sound irrelevant, it is worth the time). Please take your time to carefully review all of the posts that come up via that search. Warning!!! The post contains the word "CURE" (not my caps) & the word 'cure' doesn't apply to cluster headaches... yet. Therefore the use of the 'C' word can trigger suspicion (particularly in a 1st post) and outrage. Thanks.
  19. Brain on fire

    This helped me- hopefully will help others

    Thanks, we like 1st hand reports. Great! Got any statistics for us? Research? Edit: I hit 'back to top'. That is an eye opening thread!! I wonder what it was 'last time'.
  20. Brain on fire

    This helped me- hopefully will help others

    Please source. Thanks.
  21. Brain on fire

    printed hand out

    They look for 2 items when you arrive at the ER: #1. Picture ID: #2. Insurance card/s. Keep your medical alert cards between the 2. Why not a bracelet or necklace? Speaking for myself... I have numerous drug allergies, for 10 years I wore a medical alert bracelet. Not once did anyone look at it other than to remove it & place it with my personal belongings. Nice one too, it had easily recognizable colored bands (e.g. purple for latex) allergies.
  22. Brain on fire

    This helped me- hopefully will help others

    That was my point. Always good to eat healthy. It would be nice (in some ways) if we could 'undo' & start over. However, to do so we'd need an isolated island for a few centuries. I'm all for if it works, doesn't hurt/endanger anyone else & doesn't kill you... Do it & please be sure to share it!
  23. Brain on fire

    Greater Occipital Nerve Block - and doctors are morons

    When you find another doc dominate the conversation, be brief & on point. Just a suggestion.
  24. Brain on fire

    My latest Vitamin D Results

    Interesting... What did your doc say?
  25. Brain on fire

    This helped me- hopefully will help others

    If it works for you, good for you. Thanks for sharing it may help someone else. Just my rambling thoughts. We have evolved, we are not Paleolithic beings. For centuries our bodies & those of our ancestors have been exposed to items in our diets, environments. Many are now a part of our genetics. Do we now de-evolve for centuries in isolation to un-do?
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