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Brain on fire

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Brain on fire last won the day on August 12

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About Brain on fire

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  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. Brain on fire

    Surgery for adolescents with CH

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

    Melatonin & pineal gland

    Thanks CHfather, for keeping us updated. I couldn't get anywhere with the link & would like more info.
  5. 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.
  6. 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.
  7. 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)?
  8. 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.
  9. Brain on fire

    Intro / Vitamin D

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

    Getting circumcised

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

    Just joined.. long time follower

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

    Short break

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

    Medicare, Medicaid oxygen for us now

    Perhaps our most effective routes for meaningful change come from within the groups listed above.
  14. 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.
  15. 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)