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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Melatonin & pineal gland

    Thanks again, it would be nice if the people who could benefit from research could read about it without fees.
  2. Brain on fire

    Life Update

    Happy to see happiness shared. Congrats Dana!
  3. https://en.m.wikipedia.org/wiki/Tyramine
  4. 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.
  5. Brain on fire

    Surgery for adolescents with CH

    CHfather your research skills are amazing. Thank you!
  6. Brain on fire

    Melatonin & pineal gland

    Thanks CHfather, for keeping us updated. I couldn't get anywhere with the link & would like more info.
  7. Brain on fire

    Exercise / Running while in Cycle

    Former tri-athlete (& at a very young age over-the-top competitive at cross country & dance etc). As a result I can't buy medical clearence for anything but super lightweight physical therapy complete with constant supervision & labs. I over-trained at an early age to the point my bones are turning to dust. That was discovered after injuries (e.g. broken back) when I wrecked my bike while tri-training. I still swim, on a bad day I can swim a sprint tri-distance & I paddle & pull my kakak. My docs would just worry & want labs, so I don't tell them. When I get my hands on a horse (I'm not to ride at a walk) I'll ride at more than a walk. I won't sail over 5' tall 8' wide obstacles that don't fall or jump 6' down into water obstacles on a 2 mile cross country course at break neck speeds (broke my neck at 8yo). That could break me & I don't like to be broken.
  8. Brain on fire

    For Batch - D3 maintenance schedule - no bloodwork?

    I am by no means against the D3 regimen. Speaking only for myself here is what happened to me just taking D3, calcium (separately & together) & benadryl. I took the std dose of D3, hypercalciemia. I took the std dose of calcium-deathly ill. I didn't talk to my docs before trying benedryl. I have narcolepsy, all I could do was sleep. My body is very sensitive. I can't take a niacin supplement. Everyone is different. Supplements & OTC can react with Rx meds & with each other. Sometimes it is as simple as how your body absorbs Supplements etc.
  9. Brain on fire

    Short break

    I wonder if other folks have problems with D3, calcium, benedryl or other supplements (niacin is a big no for me too)?
  10. Brain on fire

    Short break

    Nothing like being 'comfy' in a routine of hits. I hope you'll be 'floating' soon. Curious... What was the rationale behind the docs advising you to stop the D3 in all or part? I know (for me) I can't take D3, calcium or benedryl. My body can't handle the first 2, my narcolepsy can't handle benedryl... I did nothing but sleep when I tried benedryl without talking to my docs first.
  11. Brain on fire

    Intro / Vitamin D

    Wow that is a big change. Looking forward to the input on your update.
  12. Brain on fire

    Getting circumcised

    Great input from Spiny Dana, best of luck with the surgery. Let us know how you are.
  13. Brain on fire

    Just joined.. long time follower

    Welcome DavidinFL, clusterbusters & forum members have saved a lot of lives.
  14. Brain on fire

    Short break

    Hey FunTimes, glad the surgery went well & is behind you. Onward ho!
  15. Brain on fire

    Medicare, Medicaid oxygen for us now

    Perhaps our most effective routes for meaningful change come from within the groups listed above.
  16. Brain on fire

    Medicare, Medicaid oxygen for us now

    Warning! Problems with the online plan finder for Part D shown here CMS released a draft version of the Medicare and You Handbook for 2019 online. It contained inaccuracies that were misleading in regards to original Medicare vs Medicare Advantage Plans. In original Medicare beneficiaries can see anyone who accepts Medicare (accepting Medicare assignment rarely varies). In Medicare Advantage Plans you must use preferred providers. The draft version was, to say the least showing favor to the Advantage Plans by providing misleading info. You can read about it & the groups who had it corrected on thier sites: Justice on Aging: Medicare Rights Center: Center for Medicare Advocacy.
  17. Would love to see discussions on this & cluster headaches. I have narcolepsy & chronic cluster headaches. Fairly recently a med which is sometimes used to treat cluster headaches was discontinued. My narcolepsy had been controlled for years & is back with a vengeance. Additional info & links available too (ninds.nih.gov)
  18. Brain on fire

    Guest users. Welcome!

    It was brought to my attention I thanked the worng person. Thank you Jeff
  19. 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
  20. 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.
  21. Brain on fire

    Guest users. Welcome!

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

    Guest users. Welcome!

    Welcome Chadman
  23. 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.
  24. 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.
  25. 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.
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