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ClusterBusters

weatherman

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  1. Like
    weatherman reacted to ThatHurtsMyHead in IT guy saying hello :)   
    You did a GREAT job!!!  Who knows your contribution, might have saved someone's life.
     
    J
  2. Like
    weatherman reacted to Pebblesthecorgi in IT guy saying hello :)   
    Thanks for all your help Alex. You quietly did a fantastic job. It's not easy to deal with individual computers, stream video and keep several mics in balance. Makes a big difference when someone knows what they are doing. I pray you have a smooth year and look forward to seeing you in Chicago
  3. Like
    weatherman reacted to fireface in Conference takeaways?   
    I came away with many possibilities. First on my list is the D3 regimen. Batch gave a nice presentation on its effectiveness. I already contacted my GP to schedule baseline tests. Easy, cheap and it certainly can't hurt.....
  4. Like
    weatherman got a reaction from spiny in What's it going to take?   
    jms,
     
    Firstly, let me congratulate you for being a supporter.  You are NOT a broken record and are NOT alone.  Many CH sufferers have lost relationships because spouses and/or family members do not understand, cope well or take the time to learn how agonizing this condition is.  It takes a very strong person to watch another suffer these attacks .... I can't watch it myself and certainly can't imagine seeing it happen to a loved one.  Just having someone to care is HUGE in assisting your son deal with his predicament.  We can all relate to the benefits of nurturing family, and tell awful stories of the ones who don't.
     
    What will it take to find a cure?  That's the $64 question.  It boils down to money and awareness.  CH is a rather rare and misdiagnosed affliction and those of us who have it will hide from public view, as the outcome from enduring "these suicide headaches" is not pretty.  Western medicine (and most of it's Doctors) do not understand the nature of CH, so its causes, cures and treatment range from bizarre to mundane.  There are countless afflictions that compete for medical exploration .... someday, a really rich and famous doctor will encounter CH, dedicate his life to a cure, then this will all be ancient news.
     
    This group (Clusterbusters);  created and lead by our biggest hero Bob Wold, was formed to integrate information on treatment from actual sufferers that modern medicine has avoided.  Big Pharma is profit-driven and there are just not enough of us to justify the expense of research and manufacturing drugs.  Big Medicine is not really interested either.  More Clusterheads have found relief (myself included) by the knowledge gained from this group than many other standard treatments with drugs, etc.
     
    Several things you can easily do.  First, get your son to try any and/or all of the methods that have actually worked.  CHfather's advice above is spot on good stuff.  Try anything and if it doesn't work, try something else.  Keep at it and surely your son will get some relief.  Abortives such as oxygen for a current attack work excellent, and should be easily obtained .... and there's NO side effects!  Busting is best for controlling the intensity and duration of a cycle, if he's Episodic.  Chronics like me bust regularly several times a year.
     
    Second:  Support Tyler Mann's documentary film, now in the creation progress.  Support the Clusterbusters in awareness.  Attend a Conference if possible ... it's AMAZING.  You will be acknowledged and gain so much information.  Our members use "Citizen Science" to experiment with treatments, then pass along the results, often with tremendous benefits to sufferers.
     
    We are currently our biggest advocate, but that is hopefully changing.  Momentum is gathering on research for treatments.  Awareness is increasing and more famous people are coming forward with this condition.  Progress is glacially slow on concrete developments .... that's why we need each other.
     
    Give your son a hug, oxygen bottles and keep asking questions.  There is relief.
    Wishing him Pain Free Days.....
     
    weatherman
  5. Like
    weatherman got a reaction from domino in Just Saying Hello   
    Hey DH,
     
    Any idea what started your cycle in December?  I'm at the "trying to figure out new cycles" thing too, and have not come up with any solutions.  Just the nature of the Beast, I guess.
    Also, what type of Triptans were you taking.  There's some new one's that are giving may success (thinking 5-MeO-Dalt).
    Good luck with the current situation.  Many of us also get the autonomic symptoms without pain.  It's kinda bizzare, but sure beats the crap outta the usual painful outcomes.
     
    weatherman
  6. Like
    weatherman got a reaction from Pete M in Questions about Oxygen   
    Hi Pete,
     
    What's currently working best for me.....
     
    Using a mouth tube (instead of mask) set at 15 lpm.
    Alternate deep breaths as the bag competely fills with gulps of ice water.
     
    I also try to exhale completely and hold the O2 in for a bit.
     
    weatherman
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