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alisonjmorrow

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He's USED the O2, but...
Jan 29^th, 2009 at 4:09pm

...the headache came back. Twice. Sad

He didn't take anything else with it (he has zomig sprays and injectible imitrex as well). He stayed up later than usual last night, so I'm wondering if that contributed to it as well. (99% of his headaches strike during sleep.) He also ditched the mask entirely as it did not fit his face well at all, and instead just sucked the O2 directly from the line.

Are there some people for whom O₂ causes rebound headaches? Or are we most likely doing something wrong? (I'm ordering an O2PTImask today, by the way.)

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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: He's USED the O2, but... Reply #1 - Jan 29^th, 2009 at 4:16pm Tell him to stay on the O2 longer. If you stop the O2 as soon as the pain subsides you stop the pain (for now) but the triggering mechanism (whatever it is) is still there. The next time keep him on the O2 with a reduced flow rate for ~10 minutes after the pain is gone and he should be good. Oliver
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Marc Ex Member Gender:	Re: He's USED the O2, but... Reply #2 - Jan 29^th, 2009 at 10:47pm No, O2 does not cause rebound headaches. It works on the current hit only - it's an abortive measure, not a preventative.
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Guiseppi

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Re: He's USED the O2, but...
Reply #3 - Jan 30^th, 2009 at 12:03am

I always wait to add this, there are a few of us who have that problem. The 02 beats it down just fine. As soon as you shut off the 02...or or me 10-20 minutes later, the beast is back. In the past I have dealt with that by taking an oral cafergot, then starting the oxygen. The 02 beats it down, the cafergot buys me 8-12 hours pain free time.

Cafergot is an old school CH med that fell outta favor because it takes too long to get into your system to be effective by itself against CH. Others on the board use the suppository form of cafergot with the oxygen.

Since posting that, several on the board have said they got the same result chugging an energy drink when they started the 02. The 02 beat it down, the energy drink kept it away.

So try staying on the 02 an extra 10 or 15 minutes. If that don't work, try slamming an energy drink when you start the 02. If THAT doesn't work, talk to the doc about cafergot!!! Good luck.

Joe

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

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DennisM1045

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Re: He's USED the O2, but...
Reply #4 - Jan 30^th, 2009 at 12:19pm

I never found a mask that fit right for me either. I use a mouth tube instead. Works just as well. The only trick is to make sure you're not breathing through your nose.

O2 will not cause rebounds. Sometimes I'll down an energy drink before getting on it a 2nd time. But be careful with this approach is you take Verapamil. The two can interact.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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just-squiggles

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Re: He's USED the O2, but...
Reply #5 - Jan 30^th, 2009 at 4:47pm

A couple of things I'd like to add to this:

1- Unless you have a high flow reg on the O2 he may simply not
be getting enough O2 to completely knock it out. I use a demad valve
reg and the more O2 you can breathe,the faster it works. ( A regulator
with 25 lpm capacity can be purchased for about $75.This same
regulator is the type needed for a demand valve DISS connections)

2- There are a VERY FEW of us who have had this effect and have
found that we have to wait until the hit reaches a certain level before
starting the O2 otherwise it just postpones the hit rather than aborting
it. For the vast majority of us, it is just the opposite,O2 needs to be
started as soon as possible.

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justjoan CH.com Newbie Offline I Love CH.com! Posts: 5	Re: He's USED the O2, but... Reply #6 - Jan 30^th, 2009 at 5:44pm 1st time on...for my husband...how and where do you get the o2???
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Guiseppi

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Re: He's USED the O2, but...
Reply #7 - Jan 30^th, 2009 at 5:55pm

Bless your heart for searching this site for your hubby, our suporters are golden!

Two ways to get 02. It's supposed to be prescribed by a doctor as it is a "controlled substance." Read the yellow "oxygen info" on the left side of this board. It has pictures and specific instructions for how to write the prescriptions.

Or just go get welding oxygen. It's exactly the same stuff, from the same tanks. Just don't tell them it's for people use or they won't give it to you. It requires some adaptors to rig a mask up to it.

Thanks again for doing the footwork, we love you guys.

joe

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

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justjoan

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Re: He's USED the O2, but...
Reply #8 - Jan 30^th, 2009 at 6:52pm

Thanks so much for the info...i have read several places about the yellow "oxygen info", but must be too sleep deprived to see it! Last night my husband had 4 bouts...it was heart-wrenching!!! I started researching about a week and a half ago when his cluster headaches started up...this is the first time i have witnessed them as we have been married less than a year. One thing i did find that has helped is Ice Packs...if started immediately at the onset...he thought i was nuts...but was willing to try it...3..1 on the back of his head...1 on the side and 1 on the front over his eye...he has been amazed that it has actually stopped a few of them...however it doesnt work for the ones that wake him up...sounds simple but i read that any type of headache, regardless of what kind has to do with dialated blood vessels and nerves...so i was trying to figure out how to constrict them...also started thinking about how i have broken my nose twice in the same spot...1st time didn't ice immediately and my face was so swollen it almost swallowed my nose...2nd time iced immediately for hours, just to be safe...NO SWELLING!!! only a little bruising under my eyes...so why wouldnt it work the same for your head....right??? hmm...anyway that led to "heat opens" (hair folicles, pores, etc) and "cold closes"...so i asked him if he would please try something for me...he agreed... Pre-shadow...i gave him 4 alieve and 2 excedrine migrane (not telling anyone else to take this...not a dr...not responsible if anyone else does this)...i only tried this with him because i have fibromyalgia with myofacial pain - knots...and this has sometimes helped...then immediately when he felt it coming on we put ice packs on...it worked...i thought ok...i can deal with this...then last night...oh my...what a nightmare...i couldnt bare to see him in that pain...they finally subsided after the last one at 8:30 am...so far today...he has only said he can hear the train in the distance..i have litterally been on the net ALL day, still in pj's at almost 7pm...trying to discover anything i can to give him some relief...the dr gave him stadol (?sp)...it is NOT helping!!!! I am desperate to help him...have researched everyting from magnesium, melatonin, serotonin to tryptophan to oxygen capsules to whey protien...even order sinus busters pepper spray...he has had these for 30 years and said he tried breathing oxygen before and it didnt work...i read on this site that it must be done a certain way...so am now thinking that perhaps he didnt do it right...anyway...sorry for dumping...this is just so new to me...so any and all information will help...like...wish i could see the oxygen info tab...whats up with that...why dont i see it??? thanks again..and for making me feel welcome.

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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Re: He's USED the O2, but...
Reply #9 - Jan 30^th, 2009 at 7:02pm

justjoan wrote on Jan 30^th, 2009 at 6:52pm:

i have read several places about the yellow "oxygen info", but must be too sleep deprived to see it!

I am not sure why, but I have heard of this problem before ... People do not have the row of buttons on the left side of your screen. There is some setting, in your computer, that you have to change in order to see it, but I am too old and senile to remember what the setting is.

Here is a link to that information:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

That is the information that we all talk about.

Good luck!

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: He's USED the O2, but... Reply #10 - Jan 30^th, 2009 at 7:19pm JustJoan, Check your PM's. Chuck
Back to top	CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame. Keep fire extinguisher available, and charged. IP Logged

justjoan CH.com Newbie Offline I Love CH.com! Posts: 5	Re: He's USED the O2, but... Reply #11 - Jan 30^th, 2009 at 7:22pm Thank you so very much...going to check it out now!!!...just hit me that i have a friend who scuba dives and has a divers license...i believe he has many oxygen tanks...would that work as well???
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: He's USED the O2, but... Reply #12 - Jan 30^th, 2009 at 8:52pm Scuba tanks are not filled with 100% oxygen. 100% oxygen is what we need to abort CH attacks. If your friend has a tank with pure oxygen that will work. If need be there is always the Hospital E.R. Alison, did you have any luck with getting a NON-REBREATHER?? Don
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justjoan CH.com Newbie Offline I Love CH.com! Posts: 5	Re: He's USED the O2, but... Reply #13 - Jan 31^st, 2009 at 11:02am ClusterChuck wrote on Jan 30^th, 2009 at 7:19pm: JustJoan, Check your PM's. Chuck sorry...but i don't know what PM's is...please let me know
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justjoan CH.com Newbie Offline I Love CH.com! Posts: 5	Re: He's USED the O2, but... Reply #14 - Jan 31^st, 2009 at 11:05am Thank you Don for the info
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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: He's USED the O2, but... Reply #15 - Jan 31^st, 2009 at 11:30am justjoan wrote on Jan 31^st, 2009 at 11:02am: sorry...but i don't know what PM's is...please let me know On the top of the page is a link "You have X messages, and Y new messages." Simply click that link. Oliver
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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Re: He's USED the O2, but...
Reply #16 - Jan 31^st, 2009 at 1:58pm

justjoan wrote on Jan 31^st, 2009 at 11:02am:

sorry...but i don't know what PM's is...please let me know

Quote:

Jan 31st, 2009, 1:50pm
Good Afternoon justjoan,
you have 1 message, and

1 new

message.

You probably have a line like I have shown, above, at the top of the page. PM=Private Message. If you click on the blue part, it will bring you to the private message area.

I sent you a message, with my phone number, if you feel you need to talk to someone, directly, or if you have further questions.

(edited to add:)

You need to be logged onto the site in order to see this.

Chuck

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« Last Edit: Jan 31^st, 2009 at 1:59pm by ClusterChuck »

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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George

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Re: He's USED the O2, but...
Reply #17 - Jan 31^st, 2009 at 7:23pm

ClusterChuck wrote on Jan 30^th, 2009 at 7:02pm:

justjoan wrote on Jan 30^th, 2009 at 6:52pm:

i have read several places about the yellow "oxygen info", but must be too sleep deprived to see it!

I am not sure why, but I have heard of this problem before ... People do not have the row of buttons on the left side of your screen. There is some setting, in your computer, that you have to change in order to see it, but I am too old and senile to remember what the setting is.

Here is a link to that information:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

That is the information that we all talk about.

Good luck!

Chuck

View the message board through:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

You'll see the links at the left then.

You're probably using:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

The links don't show up when you do that.

Best,

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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