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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › regulator question

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regulator question (Read 1437 times)

Molly CH.com Newbie Offline I Love CH.com! Posts: 21	regulator question Jan 21^st, 2009 at 12:51am I ordered and we have received the new regulator going up to 25 lpm. The 15 LPM is losing effectiveness and we are still waiting for the non-re-breathing mask to arrive. Is there anything we should be worried about with up to 25 lpm. can this do damage? What is more important-the new mask or the higher lmp reg? thanks, Molly
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ClusterChuck

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

Posts: 5394
Greenville, North Carolina
Gender: male

Re: regulator question
Reply #1 - Jan 21^st, 2009 at 1:01am

Molly wrote on Jan 21^st, 2009 at 12:51am:

Is there anything we should be worried about with up to 25 lpm.

YES, there is a VERY serious condition to be forewarned about:
What to do with all the extra painfree times? (A very serious malady ...) LOL

Molly wrote on Jan 21^st, 2009 at 12:51am:

can this do damage?

None that have been noted. Use it well!

Molly wrote on Jan 21^st, 2009 at 12:51am:

What is more important-the new mask or the higher lmp reg?

WOW! That is a hard question! Each of them have great importance on their own. I would say each are equally important. Used together, you are golden!

Let us know how the new equipment works for you.

Chuck

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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Molly CH.com Newbie Offline I Love CH.com! Posts: 21	Re: regulator question Reply #2 - Jan 21^st, 2009 at 1:08am Ok-just got lectured by a family member that I need to find better docs before self perscribing a harmful substance with a reg purchased over the internet. Just had a bad experience with the neuro and tired of depending on well intended but under experienced (how was that for nice) experts. Molly
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ClusterChuck

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

Posts: 5394
Greenville, North Carolina
Gender: male

Re: regulator question
Reply #3 - Jan 21^st, 2009 at 1:37am

To that learned family member, you might bring to their attention the fact that the US Navy has been having their pilots use 100% oxygen, at flow rates up to 60LPM, for two hours or more, for 60 or more years.

Now it is true that some will say that the government does not care if it is doing any damage to the human being, but they would NEVER RISK THEIR MULTIMILLION DOLLAR JETS! LOL!

You will be fine, dear!

Good luck!

Chuck

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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Molly CH.com Newbie Offline I Love CH.com! Posts: 21	Re: regulator question Reply #4 - Jan 21^st, 2009 at 1:39am sigh of relief. just wanting to help-not kill my crabby boyfriend-lol. thx.
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Skyhawk5

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I love YaBB 1G - SP1!

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Ypsilanti, Mi. USA
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Re: regulator question
Reply #5 - Jan 21^st, 2009 at 3:35am

I can verify that Oxygen at 25 lpm is perfectly safe to use for aborting CH attacks. It has been a huge help for me.

How did your family member conclude this would be harmful? Most people and a lot of Doctors don't understand why we use oxygen for CH, or how it works.

The pain of CH comes from dialated (swollen) veins in the brain that rub against the trigeminal nerve. Oxygen constricts this vein to relieve the pain.

The more and faster you get the oxygen the faster you stop the pain, for me and most of us that use higher flow O2. So please don't hesitate.

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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Molly

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I Love CH.com!

Posts: 21

Re: regulator question
Reply #6 - Jan 21^st, 2009 at 10:58am

Thanks Don, he didn't conclude that it would be harmful he just suggested that maybe we did not have enough information to be increasing flow rates of the O2 without a doctors instructions.

Mike used the new reg last night for the first time. He said it seemed to help more and the abort time was shorter. Thanks again for your advice.

Molly

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DennisM1045

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One wave at a time!

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Haverhill, Massachusetts, USA
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Re: regulator question
Reply #7 - Jan 21^st, 2009 at 12:46pm

Hi Molly,

I tried to get my Dr to persribe 25lpm last year and he balked. The standard for cluster headache is 8-12lpm. Studies on higher flow rates and demand valve are in the works but aren't complete or published yet.

However a lot of that research involves folks on this board. The gains seen at higher flow rates are just too good not to encourage the rest of us to try them.

I switched my e-tank regulator from 15lpm to 25lpm a while ago and the results have been spectacular. And there have been no negative side effects.

My wife had similar reservations when I made the switch. Those that love us are understandably nervous when we appear to be taking the advice of "strangers". It's just a sign of how much they love us.

When I returned to my Neuro and told him of my success at higher flow rates he was very supportive and interested and is looking forward to when the guidelines are changed. In the mean time he can't really go beyond 15lpm.

-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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UnderTheRadar

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Literally

Posts: 383
Texas
Gender: female

Re: regulator question
Reply #8 - Jan 21^st, 2009 at 11:11pm

ClusterChuck wrote on Jan 21^st, 2009 at 1:37am:

some will say that the government does not care if it is doing any damage to the human being, but they would NEVER RISK THEIR MULTIMILLION DOLLAR JETS!
Chuck

I can verify that; my dad flew F4's in Vietnam, 281 missions of multi-hour duration on 100% O2. Chuck is spot on! Cheesy

As for your family members, you need to tell them this: "This disease is so rare that there is just not a lot of research being done. These folks on the board are sharing the latest, most up-to-the-minute data, scouring journals and medical sites for information. There is just no way for any doctor to be as up-to-date on all of this as they are."

And if they still want to talk sh!t, tell them it's YOUR body, so suck it. Cheesy

Remember- double-line the foil, shiny side out.

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