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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Interesting sleep/CH research

    Do try to find a headache specialist! No point in wasting time.
  2. Brain on fire

    Interesting sleep/CH research

    Sleep specialists don't treat cluster headaches.
  3. Brain on fire

    Interesting sleep/CH research

    Polysomnography studies catch far more than just sleep apnea. How low did your o2 saturation get? When you read the study you have it will be there. It will also show how often your sleep was interupted and most importantly the quality of sleep you get. It will also how much slow wave sleep (SWS) & REM you get. MSLT (daytime study done right after the study you had done) includes measurements on how long it took you to get to sleep & how long after sleep you go into REM sleep. It is used to measure excessive daytime sleepiness (EDS). About 4-5 times during the day staff comes in, hooks you up & tells you to go to take a nap. Each 'nap on demand' lasts 20 minutes, they wake you. Is this neuro a sleep specialist? Is it a stand-alone office or connected to a hospital for the studies? Any sleep specialist who lacks their own sleep study facilities & staff operating them isn't worth seeing. If it were me, I'd fire that neuro and move along.
  4. Brain on fire

    Interesting sleep/CH research

    You had polysomnography studies. Did you have the multiple sleep latency tests? They are the all day tests done the morning/day after nighttime (polysomnography) studies.
  5. Brain on fire

    Hope it helps, It worked for me!

    Thank you Juan Pablo. Happy it works for you. Please keep us posted.
  6. Brain on fire

    Hope it helps, It worked for me!

    Thanks for sharing. Speaking only for my female self my triathlon training was extremely strenuous. I strictly adhered to specific dietary requirements during training. My cluster headaches did not change. Please share the sources etc for the research.
  7. Brain on fire

    Interesting sleep/CH research

    I have narcolepsy and an excellent very well qualified sleep specialist. He was/is involved in my care with every neurologist/neurosurgeon I have seen. I have good sleep hygiene, despite the fact that my hits always wake me. My sleep specialist said there is no known connection between sleep disorders and cluster headaches.
  8. Brain on fire

    Some of your questions answered here...

    They were in the © material. If I recall correctly © 2003.
  9. Brain on fire

    Some of your questions answered here...

    Interesting read. The misspellings were bothersome.
  10. Brain on fire

    CBD

    Okey dokey. I use nasal irrigation, basically a neti pot. No big pharma involved. Just be sure to boild your water for 5 minutes or use bottled filtered water.
  11. Brain on fire

    Math and Chemistry can explain it.

    Interesting read. I did find the misspellings a bit unnerving.
  12. Brain on fire

    CBD

    and the colloidal silver? Worries me also.
  13. Brain on fire

    How was your weekend?

    Opps! Not so much for folks who are vegetarian or vegan.
  14. Brain on fire

    How was your weekend?

    I vote steak and lobster for all supporters!
  15. Brain on fire

    Oxygen arrived

    Formerly known as Brain on fire..
  16. Brain on fire

    Oxygen arrived

    I'm working with the oxygen to abort. The mask and bag provided were useless. Thanks @Batch for instructions for the red neck oxygen bag. It gives plenty of o2 with no resistance... My CH all start at K9 less than 5 minutes escalate to K-10. Two exceptions, both atypical, both during the day. Perhaps later a bit before bed as a preventative can be mastered.
  17. Brain on fire

    Oxygen arrived

    Slappin my knee!!!
  18. Brain on fire

    Oxygen arrived

    Jon019, I couldn't follow the link I've used all of my data. It'll be awhile before I can get back on. Freud, thanks for asking. I liked it too. The name change was in hopes the 02 would be magical. It won't let me change my name back for a month.
  19. Brain on fire

    Zolmitriptan spray - how fast does it work?

    I enjoyed reading the creative ideas you use in helping you work through this with your son. Great ideas here also! Keep up the good work and never stop asking questions!
  20. Brain on fire

    PLEASE HELP - Bangkok, Thailand

    Bomba's Shack is the 'in place' in Tortola!
  21. Brain on fire

    Brain freeze or ice cold neti pot?

    Thanks Batch, I didn't know the difference between a mini-brain freeze vs a full on brain freeze.
  22. Brain on fire

    Brain freeze or ice cold neti pot?

    I read some have tried brain freeze by using a straw & aiming at the hit side. Has anyone tried ice cold water in a neti pot?
  23. Brain on fire

    Brain freeze or ice cold neti pot?

    @Batch Please explain how a mini brain freeze is done.
  24. Brain on fire

    Aimovig

    I just read some frightening reactions to these injections. Speaking for myself... I wouldn't risk it. Any medication with a long half-life can be frightening. It is in you, it will be for awhile and your bad reaction will last awhile. I can't offhand recall the name of the medication used for osteoporosis. It is an annual injection. Frightening... Spontaneous thigh fractures. Necrosis of the jaw bone... Once it is in, it is in for the long run. Just my humble opinion.
  25. Brain on fire

    Aimovig

    Also the needle cap has a type of rubber dust... for those with latex allergies... My clipboard was too small to handle all the info.
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