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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Not sure what to do next?

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Not sure what to do next? (Read 4829 times)

Weatherman CH.com Veteran Offline Beat the Beast! Posts: 159 Charlotte, NC Gender:	Re: Not sure what to do next? Reply #25 - Sep 17^th, 2009 at 11:15pm Maybe I won't need to use it--- PF the last two days. Maybe end of cycle? We'll see. [/quote] Congrats! Here's to more PF times!
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DennisM1045

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One wave at a time!

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Re: Not sure what to do next?
Reply #26 - Sep 18^th, 2009 at 7:14am

joboofish wrote on Sep 17^th, 2009 at 10:42pm:

Thanks for all the responses! I didn't realize there was such a debate about the oxygen.

There's a debate about most things on this site. The only thing not debated is our desire to help folks find some relief. Fortunately that debate is civil for the most part and it really is necessary.

One of the really frustrating things about CH is that nothing works the same way for everyone. There is no magic dose. Sometimes we get caught up evangelizing what works for us and forget that there are other approaches. It's then that another board member will chime in with a reminder - just like Brew did Wink

Quote:

I have ordered a mask from this site and it came yesterday. I ordered a regulator from Ebay the other night for pretty cheap. I could only find one (at a reasonable price) that goes up to 15 lpm. I bought it before everyone here posted the responses for other places to purchase them. I figure I will try this one, see if it helps, and if not I will invest in a higher flow rate to see if that helps.

That sounds like a great approach. There is a big difference between 8lpm and 15lpm (ok, it's 7lpm Roll Eyes

). I think you are going to do just fine. It's all a matter of what works for you. That can, and often does, change from one cycle to the next.
Quote:

Pretty much I'll try anything, especially with the oxygen because O2 is my preferred option to stopping this thing when compared to other medications (I tend to have weird side effects to drugs). I feel like every time I have to use the Imitrex I'm cutting a few years off the life of my heart (I'm a little paranoid too).

You sound exactly like me. I feel like every shot I take I lose. There are others that rely quite heavily on Imitrex and it works for them. Like I said, nothing works the same way for everyone.
Quote:

Anyway, when the regulator gets here I'll let you know how it works. Maybe I won't need to use it--- PF the last two days. Maybe end of cycle? We'll see. Thanks again for all the info. This place is the best.

I hope it is the end of your cycle. You'll be well prepared for the next one. Let us know how it goes...

-Dennis-

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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Skyhawk5

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Re: Not sure what to do next?
Reply #27 - Sep 18^th, 2009 at 7:48pm

I've been an episodic CH'r for over 21 (chronic 1st 2.5yrs) years and been using O2 for over 20 of them. I started @ 5-7lpm and this aborted 20-30% of my hits. 8lpm aborted 35%.

In the begining I would get up 10 attacks in 24hrs. Imitrex has never aborted a single hit for me, none of the triptans has. When my supplier gave me a 12lpm reg I aborted 40-50% of my hits.

At 15lpm this went to 60%. From this site I learned about hyperventalation and 25lpm, and went to 75-85% aborted attacks.

I am not a large person but I have large and healthy lungs. At 25lpm with a O2PTI mask with the 3 liter bag I can still empty the bag when giving it everything I have to stop a fast climbing attack. It took 30 minutes to abort a k-9 wakeup hit.

I now go even higher and abort 95+% of my hits and don't empty the bag. To me it's the difference between a Ford and a Porsche.

But yes lower flow O2 did help and I will never knock that. If we have a higher flow reg there is no requirement we have to use the high settings. In fact I don't always. But when the need is there I have it.

The increase in aborts and the precious minutes I don't suffer have given me much more confidence with fighting the beast, without a needle.

No one should suffer from CH any more than they have to and info about high flow O2 IS helping many.

Sorry Brew, but when you say you can abort in 10-15 minutes @ 15lpm it makes me cringe. For me 10-15min can mean the difference in not aborting. The faster the better.

Good valid points from everyone.....

Don

« Last Edit: Sep 18^th, 2009 at 7:56pm by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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BarbaraD

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Hugs to ya

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Re: Not sure what to do next?
Reply #28 - Sep 22^nd, 2009 at 6:56am

Me, I use the demand valve (I'm chronic and have been since 97). I've used O2 since waay back when at 8-10liters and it gave me something to do. at 15 liters it helped a little more, but since going to the demand valve I've almost completely cut out meds for aborts (occasionally I get caught out without my O2).

I can usually abort in 3-5 minutes and that's a big difference from 20-30 minutes as in the past.

But it all goes back to WHAT WORKS FOR YOU!! For those who get releif on low flow rates - great, but for those of us who've discovered that high flow rates work for us - we do tend to shout it from the rooftops cause we want everyone to be pain free as soon as possible.

Anyhow, that's how I feel.

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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Brew

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Re: Not sure what to do next?
Reply #29 - Sep 24^th, 2009 at 12:11pm

Quote:

Sorry Brew, but when you say you can abort in 10-15 minutes @ 15lpm it makes me cringe. For me 10-15min can mean the difference in not aborting. The faster the better.

I said most are between 5 and 8 minutes. I rarely get to the upper end of the Kip scale these days. What's the problem? Sorry it makes you cringe, but from my perspective it's almost a non-issue.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Marc Ex Member Gender:	Re: Not sure what to do next? Reply #30 - Sep 24^th, 2009 at 1:59pm Brew wrote on Sep 24^th, 2009 at 12:11pm: ............ .......I rarely get to the upper end of the Kip scale these days. What's the problem? Sorry it makes you cringe, but from my perspective it's almost a non-issue. And that's also a truly wonderful thing. Marc
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Not sure what to do next? Reply #31 - Sep 24^th, 2009 at 3:03pm From your lips to God's ears, Bubba.
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Skyhawk5

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Re: Not sure what to do next?
Reply #32 - Sep 24^th, 2009 at 5:17pm

Brew, I meant nothing more than pointing out that in MY case if I haven't aborted before 10-15min then most likely I'm not with O2.

Attacks ramp up very quickly for me and though not typical of CH @ 5min I break into a huge sweat and then vomit for up to a half hour whether I've eaten or not. Once there the chance of aborting gets smaller & smaller. Each minute seems like an hour. Panic sets in and here we go.

Some say vomiting marks the end of a full blown hit but not for me. I average 1.5 hours of K8-10 after. So time is a critical factor for ME.

Keep up the good work....

Don

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Marc

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Re: Not sure what to do next?
Reply #33 - Sep 24^th, 2009 at 5:38pm

Skyhawk5 wrote on Sep 24^th, 2009 at 5:17pm:

............
Attacks ramp up very quickly for me and though not typical of CH @ 5min I break into a huge sweat and then vomit for up to a half hour whether I've eaten or not. Once there the chance of aborting gets smaller & smaller. Each minute seems like an hour. Panic sets in and here we go.

Some say vomiting marks the end of a full blown hit but not for me. I average 1.5 hours of K8-10 after. So time is a critical factor for ME.

Keep up the good work....

Don

Pretty similar here, Don - but without the barf.

I have a very short window of time to kill it, otherwise I'm screwed. Zero to sheer agony in well under 10 minutes.

FOR ME (and notably NOT everyone else) high flow O2 makes all of that nothing more than a bad dream from the past.

After 13+ years of being chronic, CH's are a mere nuisance as long as I have my tank nearby. All of the dark and scary places in my mind don't get explored anymore.

I don't even need to explain to another Clusterhead what that's worth to me.

Marc

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