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Topic: Hi all… and did I mention oxygen? (Read 1324 times) |
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ttnolan
New Board Newbie
beats me
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Posts: 9
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Hi all… and did I mention oxygen?
« on: Dec 18th, 2007, 2:13am » |
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Well I’ve been poking around here for a couple of weeks now, thought it time to introduce myself. I am 49 and have been dancing with the beast since 1975… 32 years now. I am episodic, 2-3 months on, 4-12 months off. I spent the first 7 years in hell, bouncing from doctor to doctor, tests and more tests, till I went to a family doc I had as a kid. I told him the symptoms, he abruptly got up and went to his office for a book, opened it and said read… I did and it described word for word what I had just said… cluster headaches. It took a few more years and doctors to get to oxygen. The neuro I was seeing had me on sansert – yuck and didn’t work anyway! He had a new patient that swore by O2 and suggested I try it. I think I laughed at him. He stiffly told me to get over it and get a huge tank and put it by my bed. His words were, “if it even works for one person, it is well worth trying”. Good advise, it saved my life… and I mean that in the gravest most literal way! So how did I get here? I was talking with my sister and told her that if I could type “Cluster Headaches” or even “severe pain behind one eye” into a search engine and not get a recommendation for oxygen then I had to do something about it. I felt there were lives to be saved! Thanks to DJ most of my work has been done already… but the mission remains. I am currently working on O2 delivery, in particular the mask. I know about the “Clustermasx” and it is a good healthy step in the right direction, but my goal is off the shelf material available to anyone, easy to self build, works well at the high flow rates we need, robust and easy to maintain, and extremely cheap! I am moving in the right direction on that. So where have I been? I’m an old timer, this site didn’t exist last time I looked. I’ve been complacently satisfied with my level of treatment for the last ten years… but there is nothing quite like having the old trusty meds fail a few times to put you back on the war path! So who am I? Just a compassionate guy with CH that is finding an extreme need to share. Only by sharing can we help to heal each other. So you will see me around more and more. I will never find the words to express the healing that I have experienced by finding all of you here and ouch-us.org. Linda and Mike, what great examples of true warriors, and Mike… the poetry had me crying and healing, and crying, and healing for hours as I sat up afraid to go to sleep one night… Thanks. I can’t wait for the next gathering, I’ve been alone up till now. Again, thanks for this site DJ, now it’s time for me to go to work.
PS. When is the next gathering? Anything I can do?
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George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
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Re: Hi all… and did I mention oxygen?
« Reply #1 on: Dec 18th, 2007, 2:20am » |
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Welcome to the nuthouse, TT.
I'll be interested to hear about your experiments in assembling an effective 02 delivery system out of cheap, off-the-shelf materials.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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txbeck
New Board Junior
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Posts: 55
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Re: Hi all… and did I mention oxygen?
« Reply #2 on: Dec 18th, 2007, 8:13am » |
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Your timing is impeccable. Check Meetings and Gatherings, There is a meeting in Davenport, Iowa Jan. 17-20. I plan to be there! Brrr!
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Becky
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DennisM1045
New Board Hall of Famer
One wave at a time!
  
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Posts: 1639
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Re: Hi all… and did I mention oxygen?
« Reply #3 on: Dec 18th, 2007, 8:27am » |
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Welcome TT! Glad to have you aboard. There is an open spot on the starboard gunnal. Grab an oar and start rowing 
I can't wait to hear about your research. Clustermasxs are pretty rare and the general CH population could really use a cheap and widely available alternative to the non-rebreathers out there.
Everyone that finds there way here is overwhelmed by the knowledge that they aren't alone any more. It changes your mindset and is unbelievably powerful 
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Guiseppi
CH.com Alumnus
New Board Hall of Famer
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Posts: 2703
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Re: Hi all… and did I mention oxygen?
« Reply #4 on: Dec 18th, 2007, 10:20am » |
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Dude, we are twins! I'm almost 48 and my cycles mimic yours! I'll be at Davcon, it's promising to be a great gathering, just made my reservation a week or so ago so flights and rooms are still available.
Touch base with Batch when you get a chance. He is doing a LOT of work on oxygen therapy, might save you some duplication of effort.
You sound like someone who will be a tremendous addition to the board, a big old CH welcome to you!!!
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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thomas
CH.com Alumnus
New Board Hall of Famer
"Hit like a phillips head into my brain."
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Re: Hi all… and did I mention oxygen?
« Reply #5 on: Dec 19th, 2007, 10:46am » |
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You sound like a good dude. Lookin' forward to seeing you in Iowa.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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