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George

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Re: newbie supporter
Dec 22^nd, 2008 at 7:02pm

Welcome, Abby. Supporters are the gold standard in human beings as far as we're concerned. Be sure to stop by the Supporter's Board and introduce yourself there as well.

I'll defer to our resident experts (who'll be along shortly, I'm sure) to talk about how to get oxygen, and how best to use it. In the meantime, be sure to check out the "Oxygen Terms Explained" and "How to get Oxygen Prescribed" threads that are stickied to the top of the Medications and Treatments Board.

Best wishes,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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abigrrrl CH.com Newbie Offline supporter extraordinaire Posts: 7 san francisco, CA Gender:	Re: newbie supporter Reply #1 - Dec 22^nd, 2008 at 7:04pm awesome, thanks again
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Snapper21 CH.com Newbie Offline I Love CH.com! Posts: 24 Front Royal VA Gender:	Re: newbie supporter Reply #2 - Dec 22^nd, 2008 at 7:43pm I haven't gone the O2 route yet so I can't answer your question. I just wanted to say god bless you. He'll get the help he needs I'm sure.
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B.Baer

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Re: newbie supporter
Reply #3 - Dec 22^nd, 2008 at 8:19pm

Abby, I'm sure you can find most of the tech. stuff here on the site, I went about 3 years un-diagnosed ,suffered a long time , I've been confirmed going on 15 years, didn't discover O2 till 3 years ago, and at the same time discovered Imitrex. I had gone about 12 years trying many, many meds. and aborts some with limited results, some with none, some with nasty side effects, some with none. I have lurked here a long time and just recently came out of cyber-space. My wife discovered this place about six years ago and learned a great deal that helped her and me. Good for you for being here. First, get him to a good neurologist that understands us, and confirm this is what he's dealing with. I'm from Pa. and O2 requires a script. form a doctor. Be prepared for the insurance company to tell you O2 is not recognized as a treatment for headaches. I assure you they always try. Get the Neuro. Dept. involved, e-mails, phone calls whatever it takes. You may have to rent the first tank and regulator, details can be found on this site. I found you must get a regulator that allows, 15LPM flow. Get him a good non-rebreather mask, I use the Optimask, no affiliation with the company. It just works, much better than the cheap-o they give you at the O2 supplier. Go for it, I have been in cycle for going on four weeks now and have not touched a needle in over three weeks. It does not work for everyone, but is sure is worth a try, just study the correct methods, and ask questions if you need to. It has become my go to abort and I've been at this stupid game for 15 years, I still hate them, I still fight them, and I'm still learning. Best of luck to him and keep us posted.

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Rolomatic Ex Member	Re: newbie supporter Reply #4 - Dec 22^nd, 2008 at 8:21pm Please try to break it up a bit. My eyes have a problem with endless paragraphs... Roland.
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B.Baer CH.com Veteran Offline I Love CH.com! Posts: 154 Northeast Pennsylvania Gender:	Re: newbie supporter Reply #5 - Dec 22^nd, 2008 at 9:06pm Sorry bout' that, I was just off the mask and was on a slow taper, trying to type with one hand. I don't quite have the hang of doing that yet.
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: newbie supporter Reply #6 - Dec 22^nd, 2008 at 9:15pm Hi and welcome to CH.com Here's some 02 info... Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or and here.... Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Jackie
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Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: newbie supporter Reply #7 - Dec 22^nd, 2008 at 9:48pm 'Nother supporter here. It looks like you've been hooked up with most of the info you need. But if you have more questions, ask! Nice to meet you! Laurie
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Guiseppi

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Re: newbie supporter
Reply #8 - Dec 23^rd, 2008 at 10:52am

Bless your heart for being a supporter. My poor wife has put up with me for 28 years of these damned things. She's all that's kept my sanity many times! We call our supporters golden for good reason.

Tell your doctor you need a presciption for "Oxygen, at a minimum 15 LPM flow, using a non re breather mask, as needed."

That will get you the high flow regulator you need, and the non rebreather mask, that's critical. The nasal canulas and rebreather masks don't work for CH. I use APRIA, I'm sure they're available in the bay area too. They'll drop off some oxygen tanks, your regulator and your mask. Then you call them occasionbally and they swap empties for fulls.

Thatnks again for being a supporter, we can't say that enough Smiley

.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: newbie supporter Reply #9 - Dec 23^rd, 2008 at 7:16pm Hi Abby. Welcome to the family. I'm also a supporter. You've been given some great advice and if you have any questions please feel free to ask. Someone is always here to help.
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abigrrrl

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Re: newbie supporter
Reply #10 - Dec 23^rd, 2008 at 8:02pm

Can I just say you guys are so fantastic!
We tried Melatonin plus ice on neck, ice water (thru-out day and during breakout) plus a red bull, a hot bath and by damn if the beast didnt know what to do with himself last night! John was able to keep it at bay and even held a conversation with me, replete with jokes! We went to bed so happy!
Aside from the midnight nature calls, he is well. Out of Imitrex, which we finally got refills for today thru some teeth pulling. UCSF holidays have begun in earnest, ugh. But I also found a pain clinic with specific emphasis on Clusters and we're working on a referral for that and a Rx for O2.
Here's to a PFDAN to ALL!!! Cheesy

abby

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-our heaven is just waiting so put your hand into mine ...

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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: newbie supporter Reply #11 - Dec 23^rd, 2008 at 9:01pm That's great Abby. I'm so glad to hear it. Sounds like you're on the right track. Keep after it and keep us updated. Smoochies Jen
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