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Cluster Headache Help and Support >> Getting to Know Ya >> Re: newbie supporter
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Message started by George on Dec 22nd, 2008 at 7:02pm

Title: Re: newbie supporter
Post by George on Dec 22nd, 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

Title: Re: newbie supporter
Post by abigrrrl on Dec 22nd, 2008 at 7:04pm
awesome, thanks again

Title: Re: newbie supporter
Post by Snapper21 on Dec 22nd, 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.

Title: Re: newbie supporter
Post by B.Baer on Dec 22nd, 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.

Title: Re: newbie supporter
Post by Rolomatic on Dec 22nd, 2008 at 8:21pm
Please try to break it up a bit. My eyes have a problem with endless paragraphs...

Roland. :)

Title: Re: newbie supporter
Post by B.Baer on Dec 22nd, 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. :D

Title: Re: newbie supporter
Post by Jackie on Dec 22nd, 2008 at 9:15pm
Hi and welcome to CH.com

Here's some 02 info...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

and here....

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE



Jackie

Title: Re: newbie supporter
Post by Garys_Girl on Dec 22nd, 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 [smiley=wave.gif]

Title: Re: newbie supporter
Post by Guiseppi on Dec 23rd, 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=hug.gif].

Joe

Title: Re: newbie supporter
Post by flipperlips on Dec 23rd, 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.

Title: Re: newbie supporter
Post by abigrrrl on Dec 23rd, 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!!!  :D

abby

Title: Re: newbie supporter
Post by flipperlips on Dec 23rd, 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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