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Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Emgality and CCH - bummer trial results

    Food for thought, though research for this isn't possible. How many MDs assume treatment for ch works or ch goes away because patients don't return? How many patients who have side-effects caused by medications or supplements report them to their MDs? How many patients report them to the FDA? How many patients don't recognize side-effects? Keep in mind supplements are not regulated by the FDA. More than one labeled USP (indicating pharmaceutical grade), has been tested & failed to meet the ingredients etc on the label.
  2. Brain on fire

    Lithium or Occipital nerve block

    Hey @LennyC, just a suggestion. After the lithium & dexamethasone you may want to get your hips checked for AVN.
  3. Brain on fire

    Lithium or Occipital nerve block

    @FunTimes, I so hope to see you pain free SOON! It takes courage to risk getting placebo. Thanks for participating in trials!
  4. Brain on fire

    dental work triggers cluster?

    Thanks for the updates @mark m. If you go to the clusterbusters home page rather than the forum there is a donate button. Thank you for your willingness to contribute to the great work clusterbusters does!
  5. Congratulations on your remission. Keep in mind some have had remissions last 30 years that ended.
  6. Brain on fire

    TENS machine as an alternative to GammaCore

    @Jamesmsv please take the time to read about the studies on this forum clusterbusters funded on psilocybin & BOL.
  7. Brain on fire

    dental work triggers cluster?

    I was fortunate, during pre-surgical meeting I found the anesthesiologist was familiar with ch. No probs. I did not decline the pain meds, they kept my kidney. I needed the pain meds while I was inpatient. They did warp my somewhat normally warped sense of humor a bit.
  8. Brain on fire

    TENS machine as an alternative to GammaCore

    TENs unit & GamaCore are different devices with different functions. If TENs worked for CH, it would have been approved for that purpose. Placing TENs pads on the front or sides of your neck can cause a sudden drop in BP. Not to mention you are providing electrical stimulation to a head full of nerves & could induce seizures. Be careful, I wouldn't try it (fortunately I don't need to).
  9. Brain on fire

    TENS machine as an alternative to GammaCore

    "Never place the pads on the front or sides of your neck." Pretty darn clear contraindication.
  10. Brain on fire

    TENS machine as an alternative to GammaCore

    TENS on the head is a No! Be very careful using it on your neck, we don't want to see any strokes. Curious... What do you do with the other 2 pads & what frequency do you set the TENS to? My TENS was by Rx, multiple frequencies, 4 leads, 4 pads, a TENS garment (handy), pads & leads.
  11. 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.
  12. 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.
  13. 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.
  14. 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!
  15. Brain on fire

    Oxygen help

    Well done! Congratulations! Oxygen will make your life with CH so much better.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. Brain on fire

    Pain perception

    Fascinating. Thank you!
  22. 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?
  23. 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.
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