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   Author  Topic: Greetings from a lurker ;-)  (Read 583 times)
Mikk
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Greetings from a lurker ;-)
« on: Nov 7th, 2007, 9:14am »
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Hello,
 
I've been a luker on this board for over a year now, and finally decided to post after reaping a wealth of information. Thank you folks.
 
I'm an episodic, but my ch's seem to run a bit different. The beast comes on within 5 to 15 minutes, but generally lasts from 24 to 36 hours a hit. Then I'm off for 3-5 days. My cycles seems to run for 3-5 months, then I'm off for good behavior for 6-8 months.
 
Treatment wise... the only thing I've found that helps is ice compresses, pressure points over the brow and temple (beating my head into a solid object), and body positions.
 
I've not been able to get a perscription for O2 (despite providing theraputic information for ch'ers from the internet),  but my father recently moved from Florida to our home. He ran a scuba operation, has great experience with mixed gasses, and has been able to provide me with 100% O2 treatments, which I've definately benefited from.
 
After all the reading on the board, I was a little disappointed with the results, but was heartened by 1 full abort!! But... it hit back again within a couple of hours.
 
It seems to delay the hit rather than fully abort it, but, the hits seem to have diminished in intensity. Most recent hits have been more along a 6-7 rather than a full blown 10.
 
I don't know whether it's typical or not, but has anyone else had this affect with O2?
 
I don't know what's worse though... one 24-36 hour 10 hit a week, or 3-4 6-7 hits a week....
 
I don't know if it's entirely the O2 that been delaying and minimizing the hits, or if I'm going chronic.....
 
Pardon me if I'm a bit disjointed. It's been a rough couple of weeks.
 
Getting down to my question... has anyone used O2 10-15 a day as a preventative? Is it effective?
 
The regulator I've been using is a full EMT mask, on-demand system. It is possible I might have better results with a free flow rebreather?
 
My thanks for any input.
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MR_FLOOR
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Re: Greetings from a lurker ;-)
« Reply #1 on: Nov 7th, 2007, 11:32pm »
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Hey Mikk,
 
      You haven't mentioned any prevents,Verapamil,Topamax ect. Of course O2 is probably your safest abortive but have you ever tried any energy drinks such as Red Bull,Monster ect. anything with the combination of Taurine and Caffeine in it. Slam one down at the first sign of being hit. It works for me. Good luck bud.
 
 
 
 
 
 
Dave  
 
 
 
 
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RichardN
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Re: Greetings from a lurker ;-)
« Reply #2 on: Nov 7th, 2007, 11:41pm »
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Hi Mikk
 
  First off, sorry you're hurting, whatever the reason, but your first post mentions symptoms that are not normal for CH (and for that we are glad).
 
  "24-36 hours a hit" . . . sounds more like migraine (my wife had migraines for 30 yrs . . . the longest I remember was four days and three nights.  Most cluster attacks come on and ramp up very quickly and tend to last 20-45 min to 1 1/2 - 2 1/2 hr horrors. . . .  multiple attacks per day/night.  
 
  Are your headaches one-sided?  Have you taken the "cluster quiz" (link on left)?  If not, please do and let us know how you do.
 
  As for 02 . . . many ch'ers here also suffer from migrains and swear by 02 as abortive also. To be effective, it needs to be used early-on in the attack.
 
  If the EMT demand regulator is anything like the old Kirby/Morgan rigs (I used to be in the scuba business), I'd consider that way too bulky for our purposes.  Get yourself a non-rebreather mask (see "oxygen info" . . . link on left)
 
  Be Safe,  PFDANs
 
    Richard
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Re: Greetings from a lurker ;-)
« Reply #3 on: Nov 8th, 2007, 6:39am »
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Medical literature has reported your experience of O2 delaying attacks vs. stopping them. Doesn't mean anything is wrong with you or your technique: no single med works 100% and being prepared to try something different is a survival skill for us!
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Bob Johnson
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Re: Greetings from a lurker ;-)
« Reply #4 on: Nov 8th, 2007, 10:36am »
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I have a similar problem with oxygen, CH returns within 20 minutes of shutting off the 02. Now I  take 1 to 2 oral cafergot, then start the oxygen. 02 aborts within 10 minutes, cafergot will buy me up to 12 hours pain free. Like Bob said, it's tough to find a combo that works for everyone. It will take some trial and error on your part to find an effective treatment.
 
One other thing, start a headache journal and get real specific with your description. When you describe a 36 hour headache, is that one long ass kicker, or multiple 60-90 minute hits followed by the "headache hangover?" The diagnosis and treatment of headaches tends to be in the details, either way good luck!!!
 
Guiseppi
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