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Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire


    Hey Kat, our much beloved Tingling used tuarine supplements, others have as well. Your best bet is to search for it with the magnifying glass. If you add search by author Tingling her posts had a good bit of info on it.
  2. Brain on fire


    @Rainmaker Please provide a link to this study for sourcing etc. Thanks!
  3. Brain on fire

    My chronic CH are the result of a virus

    Eastern Equine Encephalitis is caused by a mosquito (not a tick) & vector born diseases do not (in & of themselves) cause ch. If that were the case hmm... Areas where there are no vector born diseases but there is ch? Every person on the forum with ch has (diagnosed or not regardless of their non-exposure) vector born disease? Please keep in mind new folks may have been given very little info about TACs (cluster headaches) from thier MDs & may look for accurate info here. Naturally people would like to find something specific to blame their ch on & kick it around for causing them. The most we know now is the hypothalamus (posterior I believe), the trigeminal nerve & possibly a CGRP cascade. Other's please chime in & do correct me if I am wrong.
  4. Brain on fire

    Great news about my O2!

    When I was pre-oxygen in high cycle chronic I got hit one evening. I made it to my car to drive myself to the ER, realized I couldn't drive & the ER was futile. I sat in my car screaming & periodically banging my head on the steering wheel until it ended. So happy to be starting a new year with those days and nights behind me! Thank you clusterbusters!
  5. Brain on fire

    K Cure for Cluster headache?

    There is no known cure for cluster headaches. Indicating one exists is insulting & misleading.
  6. Brain on fire

    Merry Happy Pain Free Days & Nights

    To all the clusterheads!
  7. Brain on fire


    @ddove awesome news, I hope it continues to improve. Please keep us updated on effectiveness & any side effects you may expierence.
  8. Brain on fire

    Verapamil and stomach upset

    Agree with @jon019 re constipation. I'll add movement also increases motility. @igdc if you are having pain without constipation get thee to a doctor!
  9. Brain on fire


    If Emaglity works as a preventative, an abortive won't be needed. Sumatriptan has caused increased intensity, duration, frequency in many & several reported going from episodic to chronic due to using it. Which is why we recommend oxygen over Sumatriptan everyday.
  10. We know prednisone causes AVN (bone death), I finally found the post warning about vision damage. Here is a link to the post specific to cluster headaches & prednisone use
  11. Brain on fire


    @Luis it is my understanding in order to get the correct dosage of 3 100mg injections/month for episodic cluster headaches & have the manufacturer's coupon work for it the Rx from your MD must show the correct dosage, your medical records must show the correct diagnosis & the coupon must be specific to the diagnosis. If any indicate migraine, be prepared for a fight to get Emgality. If your doc has you down with migraines (the Maxalt you take is for migraines), oxygen isn't used to treat migraines & insurance won't cover it for them.
  12. Brain on fire

    Cluster headache and multiple sclerosis

    Hey @JenniDawn here are my wishes for you. May your clusters never return. May you never have another cancer. May your pockets be filled with enough money to meet your needs. May your teenagers grow healthy, happy, wise & not induce anger. May your Holidays be bright.
  13. Brain on fire

    How to get oxygen in Philly ???

    Medical oxygen suppliers are regulated, if your doc Rxs oxygen (regardless of diagnosis) they cross a line if they deny you. Check online for suppliers in your area. Does your insurance cover oxygen for cluster headaches? If not there are options. That is a pretty low dose of Verapamil. Is it immediate release? Most don't use Sumatriptan tablets because they are far too slow for cluster attacks.
  14. Brain on fire


    So if it works for you how much will it cost when your 'free' year ends?
  15. Brain on fire

    My vit d blood test

    A big shout out to all of the women who have this. Our challenges can differ significantly. @EyecePick a trauma nurse, good for you & your patients! I've been treated in a level 1 trauma unit. No pressure there! @Emmalou you are far stronger than this beast.
  16. Brain on fire

    RIP Marie...

    Sad news, my heart goes out to her family. I sincerely hope every person considering suicide reaches out & this never happens again.
  17. Brain on fire


    Forgot to ask... Did your insurance cover Emgality or did you get some sort of discount/coupon?
  18. Brain on fire


    @Luis one 120mg injection a month is for migraines! You really need to get oxygen and apparently a doc with at least some knowledge about clusters/TACs etc.. 'Oxygen is hard to get.' is a lousy excuse for not writing an Rx for it. I'd call any doc on that one as soon as the words hit my ears!
  19. Brain on fire

    What if there WAS a CURE?

    if it is alive it isn't a booger. 1.5 guinea fowl every 5 days, detox from ducks required.
  20. Brain on fire

    What if there WAS a CURE?

    @jon019 most of my life was on a farm. Ducks are funny, their eggs are yummy & (we only ate wild ones) ducks are delicious. I'd secretly pick a basket of grapes just for the ducks. I spent some hilarious time tossing & rolling grapes for my duck pals (RIP Melvin Duck).
  21. Brain on fire

    What if there WAS a CURE?

    Ooo I can't recall the title but there was an awesome B-movie (hilarious) where alien slugs controlled peoples minds through their noses! I had a slug invasion here (eeeww). Even during the hottest, dryest part of the year as soon as the Sun stopped hitting the back of the house, they'd be all over the windows, siding, storm door & patio. I tracked in a live one once, it died a horrible salty death. Someone suggested beer in a pan to save my plants. I tried it and ended up with a tangled wad of 1,000's of LIVE slugs. Epsom salt, horse hair (mane & tail) around the plants, coffee grounds (neuro toxin for slugs), crushed glass, crushed stone, crushed pottery, borax, didn't put a dent in the slug population. I don't give up easily, but after 2 years I sealed around my window screens, never went barefoot while they were active, kept a salt shaker by the back door, checked before tracking any in & let them have my plants.
  22. Brain on fire


    If I recall correctly chronics (why does this continue?) were dropped from the study on Emgality (too).
  23. Brain on fire


    So happy you got a break. Please keep us updated on your results & any side-effects you expierience. I hope since you saw your neuro he prescribed oxygen. It is essential to have it if they return.
  24. Brain on fire

    14year Episodic CH'er with Breakthrough

    Thanks, I'm not a sir My chronic cluster headaches were (love 'were') all nocturnal (every night kip 10s) with a few exceptions during high cycle and when I briefly experienced slapbacks during my initial use of the alternative treatment we most often discuss here. Excercise got my CCH nowhere but I had thighs like small hams. I'm a bit on the thin side, ok fine honestly, I'm skinny as a rail. That can be an advantage in a tri. I am happy it wirks for you. BTW if you plan to tri you need to train your body to work anaerobicly, with much less oxygen. The alternative treatment keeps me to pain free for right at 30 days now. I have such confidence in this method I know my pain free time will increase when I begin spreading out my treatments.
  25. Brain on fire

    Please can someone help!

    I live Southern, I keep my D level up by a tremondous amount of exposure to the Sun. Sunlight & fresh air do the body good. Understand the anxiety would be an issue. Completely understand not wanting to take meds long term.