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ClusterBusters

Brain on fire

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Everything posted by Brain on fire

  1. Brain on fire

    Ginger for preventing or aborting?

    Do keep us updated. I am fond of ginger... I'm starting to like it more.
  2. Brain on fire

    Hope it helps, It worked for me!

    Juan Pablo, No need for apologies, thank you for sharing!
  3. Brain on fire

    Busting the Clusters

    Well stated Seigfried! Each beating of the beast is a victory.
  4. Brain on fire

    Busting the Clusters

    Thanks for sharing. Happy you found something that works for you .
  5. Brain on fire

    Ginger for preventing or aborting?

    FunTimes that will spice up your day. If you like it sweet making your own candied ginger is easy & delicious. I am fond of ginger. I've heard of some using ginger beer for nausea. You can get a strong ginger beer. I don't know about using it for aborting or prevention.
  6. Brain on fire

    Ginger for preventing or aborting?

    I'll try itt
  7. Brain on fire

    gammaCore device query

    There is also a surgically implanted vagus nerve stimulator. Used to treat depression. That is probably what your neuro defaulted to. It has been around for decades.
  8. Brain on fire

    Hope it helps, It worked for me!

    Thank you Juan Pablo. Happy it works for you. Please keep us posted.
  9. 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.
  10. Brain on fire

    Some of your questions answered here...

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

    Some of your questions answered here...

    Interesting read. The misspellings were bothersome.
  12. 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.
  13. Brain on fire

    CBD

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

    How was your weekend?

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

    How was your weekend?

    I vote steak and lobster for all supporters!
  16. 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!
  17. Brain on fire

    PLEASE HELP - Bangkok, Thailand

    Bomba's Shack is the 'in place' in Tortola!
  18. 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.
  19. 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.
  20. Brain on fire

    Aimovig

    6.2 Immunogenicity As with all therapeutic proteins, there is potential for immunogenicity. The detection of antibody formation, including neutralizing antibodies, is highly dependent on the sensitivity and specificity of the assay. Additionally, the observed incidence of antibody (including neutralizing antibody) positivity in an assay may be influenced by several factors including assay methodology, sample handling, timing of sample collection, concomitant medications, and underlying disease. For these reasons, comparison of the incidence of antibodies to erenumab-aooe in the studies described below with the incidence of antibodies in other studies or to other products may be misleading. The immunogenicity of Aimovig has been evaluated using an immunoassay for the detection of binding anti-erenumab-aooe antibodies. For patients whose sera tested positive in the screening immunoassay, an in vitro biological assay was performed to detect neutralizing antibodies. In controlled studies with Aimovig, the incidence of anti-erenumab-aooe antibody development was 6.2% (48/778) in patients receiving Aimovig 70 mg once monthly (2 of whom had in vitro neutralizing activity) and 2.6% (13/504) in patients receiving Aimovig 140 mg once monthly (none of whom had in vitro neutralizing activity). The neutralizing anti-erenumab-aooe antibody positive rate may be underestimated because of limitations of the assay. Although these data do not demonstrate an impact of anti-erenumab-aooe antibody development on the efficacy or safety of Aimovig in these patients, the available data are too limited to make definitive conclusions.
  21. Brain on fire

    Hello (First Post)

    Hello BrianK and welcome. I have narcolepsy. I enter REM within minutes of going to sleep. My clusters always come at night. I keep a very strict sleep schedule. An hour before I go to bed I do a dim down. Turn off TV, computers, LED lights, bright lights, stay away from cell phones and reduce stimulation. I'm asleep 5 minutes after I get in bed. By any chance have you had a night time sleep study (polysomnography) or a daytime study (Multiple Sleep Latency Test) MSLT?
  22. Brain on fire

    Amitriptyline... Anyone heard of it?

    I was asking about tanks larger than E tanks. I rarely travel so E tanks just didn't seem to make sense for me.
  23. Brain on fire

    Amitriptyline... Anyone heard of it?

    BattMecke, sorry for hijacking! Interview new doc & fire your so called 'doctor'. See someone who knows what clusters & their treatments are. Take heed of tje knowledge here.
  24. Brain on fire

    Amitriptyline... Anyone heard of it?

    I may get oxygen for Christmas.My clusters only occur at night. I don't have a need for E tanks. What tanks, something to secure them with by my bed etc do I ask the supplier or Santa for? The non-rebreathr mask will come with.
  25. Brain on fire

    Aimovig

    Tony Only, Always report side-effects to the FDA and all of your MDs. Not all MDs report them to the FDA so it is up to the patients. If the FDA gets enough (define enough) reports they will issue an action for the manufacturers to include it on the full prescribing info. The full prescribing info that comes with medications (if you ask for it) will not be corrected on existing bottles/injections. The process is notoriously slow. In the meantime search the name of the medication with the word reviews. Ignore the manufacturers sites. When you find them sort by lowest rating.
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