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Many thanks from new member! (Read 496 times)
Matt1993
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Many thanks from new member!
Jan 22nd, 2011 at 1:28am
 
Hello everyone.  Just a quick thanks to all the great info on this site.  I've trolled here before, but finally joined.
I'm 43 and been suffering from the demon for about 18 years.  I just started a new cycle after ending my longest remission.  3 years PF!  Unbelievable.  I thought maybe they were gone for good.  Well, we all know how that ends.....the quick wake up in the middle of the night, sitting on the edge of the bed and thinking "Oh no, they're back."  and boy are they back!  Two last night and 5 the night before!
My last run was back in Nov 07 and I was prescribed Prednisone and Elavil to break the cycle.  It worked.  I finally was able to convince my GP that I needed a specialist.  He sent me to "The headache clinic" and I haven't looked back.  Based on what I saw in this site I asked about oxygen and it was added to my plan.  They prescribed the 6lpm with a nasal canula, but today I got the better regulator and a larger collection of bottles based on all the fantastic advice in here, especially in the oxygen section.  I just aborted one with my non-rebreather at 15lpm.  Maybe tonight I can stay in bed for a full nights sleep.  I don't know about all you guys but when the KIP number climbs up I become the Night Watchman.  I walk the neighborhood until I can get the beast to leave.  Don't wanna wake the wife and kids. Sometimes I walk for miles.....Thank you for all the great info and best wishes for a PF night for us all!
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Guiseppi
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Re: Many thanks from new member!
Reply #1 - Jan 22nd, 2011 at 9:50am
 
Glad you stuck your nose in Matt, welcome! Sadly, that low flow 02 with the nasal canula is a common first intro for new CH sufferers. It's almost guaranteed not to work, as a result, they go thru life thinking 02 won't help them! Sad

My last remission went over 2 years before the beast returned. I'm 50 now and had almost convinced myself I had outgrown them! Angry Wrong! Looking forward to hearing from ya.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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bejeeber
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Re: Many thanks from new member!
Reply #2 - Jan 22nd, 2011 at 8:27pm
 
Yeah when I had a long remission I thought my CH might've burned out. WRONG.  Cheesy

So cool that you're treating the demon to some merciless knock out punches with the O2 Matt.  Cool

A headache clinc that prescribes 6 LPM/canula. That is such a joke. Oh well, I believe there's a move afoot amongst some proactive and dedicated O2 for CH advcocates to educate the bozos medical community about the effective way to administer O2. Hopefully the docs, or at least the headache clinics, will catch on at some point.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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