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Brain on fire

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Everything posted by Brain on fire

  1. This forum saved my life. It has done the same for many other's. We don't live forever. Stick around other's with ch need your wisdom & the wisdom you will gain by partcipating here. Advocate for people with ch. Volunteer for clinical trials. Attend Headache on The Hill & the annual Clusterbusters Conference,. Please consider donations to further research, include Clusterbusters in your Will etc. & encourage other's to.
  2. Brain on fire

    Sneaky two time attacks at night

    The thought of ever using imetrex again makes my heart do flips. Please get the oxygen, it has no side effects, it will not cause Increases in frequency, duration, intensity, a switch to chronic ch or the boatloads of other nasty side-effects imetrex does.
  3. Brain on fire

    Sneaky two time attacks at night

    Shirt & a big hat will block the sun & the D. Scantily clad, fair skinned, Southern climate.
  4. Brain on fire

    Sneaky two time attacks at night

    If you have to work on your Dr to get oxygen, you need a decent doctor. 240 Verapamil is a fairly low dose for CH. For increases you'll need your cardio checked. Some anesthetics can trigger CH. Sleep disruption can trigger CH. Naps can trigger CH. Surgery can lower your D3 level. It did not lower mine (99 about 4 days post-op nephrectomy). I can't take the D3 alone, much less the regimen. I get mine from a tremendous amount of sun exposure. Hope that helps!
  5. Brain on fire

    Oxygen help

    Well done! Congratulations! Oxygen will make your life with CH so much better.
  6. Brain on fire

    Cluster HA and Tolosa-hunt

    Welcome PMA, quite the ordeal. Please read the blue banner New User's & the thread titled basic non-busting info. You can use the magnifying glass to search for things, it is a helpful tool.
  7. Brain on fire

    Lithium or Occipital nerve block

    @FunTimes that's incredible. It would be fantastic if getting off the pharma & busting was the answer for you after all that pharma & supplements not helping you.
  8. Brain on fire

    Oxygen help

    Fantastic! Are you getting medical oxygen? If so they'll supply a regulator, (probably only goes to 15lpm) & a nonrebreather mask. If you get small E medical tanks they'll provide a cart.
  9. Brain on fire

    Lithium or Occipital nerve block

    @devonrex have you tried nasal ketamine? I understand it can be effective for refractory chronic ch. Hope your Devon Rex kitty is well.
  10. Hey @Vipul, interesting (I read the abstract in reference 6 as well) thank you for sharing. If you have not had imaging studies by all means get them! That should have been done right away to rule out tumors etc.
  11. Brain on fire

    Pain perception

    Fascinating. Thank you!
  12. Brain on fire

    Prescription Frustrations - long rant

    Calling your CEO smart move. I've had to do something similar. Ended up having a meeting with all employees & the insurance broker. Such a ruckus after the meeting the insurance company was changed & everything was covered. Congrats on your oxygen! Are you in love with it yet?
  13. Brain on fire

    Lithium or Occipital nerve block

    Good for you @FunTimes! I like to know what is working so I put my time & effort into one ch thing at a time. Of course oxygen will always be on hand.
  14. Brain on fire


    Shame you can't take psychedelics @Luis. Taking them kills my chornic clusters and each dose puts a dent in my CPTSD. In your shoes, I would look at changing neurologists as a positive. Be glad you got the Rx for the oxygen, suggest you run (don't walk) to get it filled!
  15. Brain on fire

    I think I caught the beast before it caught me

    Life in the woods is good
  16. Brain on fire

    Positional Headaches

    The MRI of your neck is important. The cervical spine is so delicate if you put your weight on your head to roll over during sleep you can break your neck. I broke mine as a child, fell off a horse. Best to you in your search.
  17. Brain on fire

    Lithium or Occipital nerve block

    Brave, smart maneuver. The therapeutic dose of Lithium is very close to the toxic dose (getting dehydrated can cause toxicity) thus the necessity of having your levels checked. Read up on lithium toxicity. I was put on lithium & had toxic reactions even though I wasn't dehydrated. Best wishes for success.
  18. Brain on fire

    I think I caught the beast before it caught me

    "disturbing lack of ballistic knowledge" LMAO @spiny!
  19. Brain on fire

    I think I caught the beast before it caught me

    @Batch Love the sign, needs micro print! Please tell me I'm not a better marksperson than you?
  20. Brain on fire

    Foods that trigger CH's

    I was fortunate to get the correct diagnoses (and have it confirmed with a blind 2nd opinion) despite my gender.
  21. Brain on fire

    15 year remission?

    You may want to apply for a patient assistance program. Some local charities offer them.
  22. Brain on fire

    Newly diagnosed CH

    Beautiful thread. Nce to see this kind of support on a consistent basis.