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ClusterBusters

Brain on fire

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Posts posted by Brain on fire


  1. 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.


  2. Welcome Rory. Glad you found the group. Rest assured the info and knowledge here is a tremendous help to CHers & their supporters.

    Dallas... I think it was Dallas (pardon my memory impairment) has given me info on using welding oxygen.

    I'm calling local suppliers to inquire about leasing a tank.


  3. 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.


  4. Hello Chano33, I saw you had used the 'magic word' Farm. If you've never been 'down on the farm' allergies may be the problem. Lived on farms my entire life & have no allergies to grasses, livestock dander etc.


  5. Spot on with the hypothalamus. Mine is extra special whacky... Meds I was on (unrelated to clusters) for years 'fool' the hypothalamus. It then tells the body 'You must have carbs.' In my case body obeyed. I went from my normal 125 lbs (I'm 6' tall) to a whopping 260 lbs. I could barely move. I demanded the meds be discontinued & they were. Less than a year later back to 125 lbs & moving.

    Several years ago I had food poisoning so severe I was hospitalized. My core temp at admission 94° pneumonia set in. Back and forth hours apart... core temp 105° cooling blankets applied. Core temp 93° warming blankets applied. I had standing orders for cooling & warming blankets.


  6. Energy shot fail. If anyone has heard of a device similar to a hearing aid please let me know. I have a class Dec 6th. I'll stop by the library after to check posts & email. This is my 1st forum, I'll learn the ins, outs... how to find topics etc. soon.


  7. Thanks Jon! Happy to have found the support & vast amount of info here. You are spot on with stasis & caffeine. I don't consume caffiene so... I'm looking forward to tonight's/tomorrow morning's caffeine test.

    CHfather thank you for the info. At this point I'm willing to give the beast a shot of caffeine rather than sumatriptan.

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