A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2:

Do you hyperventilate the O2?

Do you use any other special breathing technique (e.g., taking deep breaths)

What flow rate are you using?

How long on average do you breathe the O2 when aborting an attack?

Approximately what percentage of hits are you able to successfully abort with O2?

Can you actually abort a wake up from a deep sleep K7+ hit with O2?

Do you experience rebounds? If so, about how soon after aborting an attack?

Do you remove your mask (or mouthpiece) for each exhalation?

Thanks!

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2?Sometimes. Do you use any other special breathing technique (e.g., taking deep breaths)Yes What flow rate are you using?25 lpm How long on average do you breathe the O2 when aborting an attack?Average 4-5 minutes..... Approximately what percentage of hits are you able to successfully abort with O2?99.999% Can you actually abort a wake up from a deep sleep K7+ hit with O2?yes Do you experience rebounds? If so, about how soon after aborting an attack?no Do you remove your mask (or mouthpiece) for each exhalation?no Thanks!

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2? Not usually, I do it as much as possible, but I'm on 15lpm, and can't afford a 25+lpm regulator. Do you use any other special breathing technique (e.g., taking deep breaths) This is what I do for the most part. What flow rate are you using? 15lpm How long on average do you breathe the O2 when aborting an attack? 15-20 minutes. It's usually over before that though. Approximately what percentage of hits are you able to successfully abort with O2? 90% Can you actually abort a wake up from a deep sleep K7+ hit with O2? I take melatonin, so I generally don't wake up with night hits. Do you experience rebounds? If so, about how soon after aborting an attack? Not really. Do you remove your mask (or mouthpiece) for each exhalation? If it's the mask, yeah, if it's the mouthpiece, no. Thanks!

Quote:

Do you hyperventilate the O2? No Do you use any other special breathing technique (e.g., taking deep breaths) Yes What flow rate are you using? 15lpm How long on average do you breathe the O2 when aborting an attack? 5 minutes to abort, another 5 minutes to be safe Approximately what percentage of hits are you able to successfully abort with O2? 90% Can you actually abort a wake up from a deep sleep K7+ hit with O2? Yes Do you experience rebounds? If so, about how soon after aborting an attack? No - that's the reason for the second 5 minutes Do you remove your mask (or mouthpiece) for each exhalation? No - I use a mouthpiece

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2? Yes. Vigorously whether I feel like it or not. It is hard to force myself to do this sometimes, but I've learned that it is critical to get the best results Do you use any other special breathing technique (e.g., taking deep breaths) Deep breathing as fast as I can. Need to sit up straight to be most effective for me. My natural position would be hunched over, but I cannot suck enough O2 that way What flow rate are you using? Two 25 lpm regulators and tanks, connected together with a "T". 35-45 lpm is my best guess. How long on average do you breathe the O2 when aborting an attack? 3-6 minutes at full flow. I don't watch the clock, I count breaths. Around 60-90 breaths does it for me. Approximately what percentage of hits are you able to successfully abort with O2? Something slightly under 100%. Can you actually abort a wake up from a deep sleep K7+ hit with O2? I've learned to wake up before it gets bad, so "Yes" Do you experience rebounds? If so, about how soon after aborting an attack? The term "rebound" has a particular meaning that doesn't apply to O2. But, "No" they generally don't come back since I learned to hit every hit full blast. At 15 lpm, they always came back in a few minutes Do you remove your mask (or mouthpiece) for each exhalation? Mouthpiece lately - "yes" when I'm going flat out Thanks!

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2? no Do you use any other special breathing technique (e.g., taking deep breaths) deep and steady breaths, I try to pace myself What flow rate are you using? I begin at 12-13 lpm, then turn down to 10lpm as I find I don't collapse the bag How long on average do you breathe the O2 when aborting an attack? depends on the severity of the attack. Sometimes 6 min., sometimes 20. Average is about 8-9 min. Approximately what percentage of hits are you able to successfully abort with O2? 98% Can you actually abort a wake up from a deep sleep K7+ hit with O2? my attacks wake me before I get hit (within 1-2 min.), so I don't know Do you experience rebounds? If so, about how soon after aborting an attack? no, no rebounds Do you remove your mask (or mouthpiece) for each exhalation? no Thanks! you're welcome

Quote:

Hey O2 evangelists - ya hyperventilating? A questionnaire specifially for you hot rodders on here with the high flow regulators

Your choice of words is very questionable…..
disrespectful… and very patronizing……
you should look at your post and maybe
re-consider your choice of words…….

Michael

wildhaus wrote on Sep 1^st, 2009 at 10:21am:

Quote: Hey O2 evangelists - ya hyperventilating? A questionnaire specifially for you hot rodders on here with the high flow regulators Your choice of words is very questionable….. disrespectful… and very patronizing…… you should look at your post and maybe re-consider your choice of words……. Michael

:-?I did not see it that way at all Michael.

wildhaus wrote on Sep 1^st, 2009 at 10:21am:

Quote: Hey O2 evangelists - ya hyperventilating? A questionnaire specifially for you hot rodders on here with the high flow regulators Your choice of words is very questionable….. disrespectful… and very patronizing…… you should look at your post and maybe re-consider your choice of words……. Michael

Dude - lighten up a little.

Nor did I Mel.

High-flow regulators being compared to a hotrod with an engine that is bigger and faster than,  say a Honda Civic.  Actually your choice of words are very clever sir. 

A lot of us 'push' using 02(the buttons on  a lot of our posts)  because it works and we want everyone to have as much knowledge about something that works... as we can.   Yep.  VERY clever choice of words indeed.   :)

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2? Sometimes Do you use any other special breathing technique (e.g., taking deep breaths)I breathe deeply What flow rate are you using? 15 lpm How long on average do you breathe the O2 when aborting an attack? about 15 min Approximately what percentage of hits are you able to successfully abort with O2? 90% Can you actually abort a wake up from a deep sleep K7+ hit with O2? yep Do you experience rebounds? If so, about how soon after aborting an attack?i experience rebounds depending on how long i stay on the o2. usually ten minutes after the cluster is gone ensures its gone for good Do you remove your mask (or mouthpiece) for each exhalation? yep, i have an optimask Thanks!

wildhaus wrote on Sep 1^st, 2009 at 10:21am:

[quote] Your choice of words is very questionable….. disrespectful… and very patronizing…… you should look at your post and maybe re-consider your choice of words……. Michael

Hey Michael, no disrespect intended. I see you're in Switzerland, and if that's where you originally hail from I suppose we may have a bit of a cultural disconnect here. You see I have a penchant for colloquialisms etc. that makes for an extremely informal attempt at kitsch/humor, maybe something that gets a bit lost in the cultural translation, or that the USA folk here are more accustomed to having to put up with?  :)

Now, regarding the responses to the questionnaire so far: Woodawgy!  :)

Extremely helpful and informative for me, and I would hope for anyone else happening along who is trying to optimize their O2 use. Thanks again.  ;D

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2? Sometimes Do you use any other special breathing technique (e.g., taking deep breaths) ye What flow rate are you using? 15-60 How long on average do you breathe the O2 when aborting an attack? 3-5min Approximately what percentage of hits are you able to successfully abort with O2? 90+ Can you actually abort a wake up from a deep sleep K7+ hit with O2? yes. 6 times / nite Do you experience rebounds? If so, about how soon after aborting an attack? never Do you remove your mask (or mouthpiece) for each exhalation? no Thanks!

NOT O₂ evangelist just a fukkin pagan 8-)

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2? Kinda hard to at 15lpm, but then I don't really feel the need to. Do you use any other special breathing technique (e.g., taking deep breaths) Just breathing deeper than normal. What flow rate are you using? 15lpm How long on average do you breathe the O2 when aborting an attack? 5-7 minutes Approximately what percentage of hits are you able to successfully abort with O2? 95-99% Can you actually abort a wake up from a deep sleep K7+ hit with O2? Sure. Takes a little longer, though. Do you experience rebounds? If so, about how soon after aborting an attack? Rarely. If so, about 20-30 minutes. Do you remove your mask (or mouthpiece) for each exhalation? Yes (mouthpiece). Don't have to clean it as often that way. Also, it's quieter. Thanks! You're welcome.

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2?Sometimes Do you use any other special breathing technique (e.g., taking deep breaths) Rapid deep breaths What flow rate are you using? 25lpm How long on average do you breathe the O2 when aborting an attack?5-8mins Approximately what percentage of hits are you able to successfully abort with O2?95% Can you actually abort a wake up from a deep sleep K7+ hit with O2? I don't tend to get wakeups, and don't go to bed until I'm sure I'm done for the night Do you experience rebounds? If so, about how soon after aborting an attack? Only if I stop to soon,  5-10 mins Do you remove your mask (or mouthpiece) for each exhalation? At the beginning until my breathing slows down Thanks! You're welcome.  I might add that I'm one who thought O2 didn't work for me.  I used it with a non-rebreather mask at 15lpm several years ago, but if I didn't get to it in the shadow stage it was to late.  Got an O2ptimask at the convention and a 25lpm regulator (thanks to a friend!) and got O2 a couple of days later.  It is the best thing that I've found yet!

Quote:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2?sometimes Do you use any other special breathing technique (e.g., taking deep breaths)deep breadths What flow rate are you using?25 How long on average do you breathe the O2 when aborting an attack?10min (5 to kill the attack + 5 to make sure) Approximately what percentage of hits are you able to successfully abort with O2?99% Can you actually abort a wake up from a deep sleep K7+ hit with O2?everytime Do you experience rebounds? If so, about how soon after aborting an attack?no Do you remove your mask (or mouthpiece) for each exhalation?no Thanks!thankyou

Bejeeber,

You’re right… the colloquialisms and attempt at kitsch/humor not only got lost in translation, they hit a nerve that already has an electrified probe implanted within it to stimulate my clusters to a stand-still, so it was doubly sensitive.

Part of my initial reaction to your post is simple.  O2 therapy is a serious subject.  We have too many CH’ers now who don’t use O2 for one reason or another and it’s easy to see, at least to me, that some of your colloquialisms and attempt at kitsch/humor could provide yet another reason. 

I’ve seen too many CH’ers that have become so lax and so accustomed to instant gratification reach for an injection rather than take the disciplined approach of 3 to 5 minutes of properly administered O2 therapy to achieve an abort to the same pain free state.  Ask yourself what is the difference between these two methods of intervention and you’ll see why I take this topic so seriously…

The other part of my reaction is based on the fact that we just concluded one of the most extensive and comprehensive cluster headache surveys ever conducted.  This web-based survey consisted of 187 questions covering epidemiology, demographics, diagnostic, therapeutic, insurance and other factors including virtually every aspect of oxygen therapy.  1,134 cluster headache sufferers completed this survey making it the largest of its kind. 

Having assisted Royce Fishman, Dr. Todd Rozen, and Pete in the development and promotion of this survey and having seen some of the compiled results, I’m struck by the irony of your well-intended attempt to gather information on a topic that was covered so thoroughly with scientific precision.   However, when an offer was made to present these results at a recent gathering of CH’ers, the offer was dismissed…  Figure that one out…   

We know that knowledge is power and knowing there’s a better more cost effective and safer method of aborting our attacks with no side effects empowers us.  That’s what makes the fact that the offer to present this information was refused so frustrating.

Fortunately, we will be able to make some of the cluster headache survey results available for posting here on CH.com and OUCH and other websites, once Dr. Rozen presents them at the IHC 2009 14th International Headache Congress in Philadelphia some time on the 11th or 12th of this month.  Pete is already scheduled to meeting with Dr. Rozen and other noted neurologists in Philadelphia so there may be other more specific information on oxygen therapy available for release.

Linda,

I believe I belong to the group that not only puts a button on his posts to promote O2, but does even more…  a lot more...  And like you, much of this continues to be accomplished behind the scenes and out of public view. 

We are well aware of, and commend the outreach you provide in Family Services, but you are not alone in doing so...   And, as there are so many CH’ers in need, more than any one of us can reach as individuals, Pete and I along with other enlightened oxygen therapy users, provide a similar outreach and have continued to do so since we started the O2 User’s Group over two years ago.
We also continue to do much more…

Michael

I don't think there was any disrespect intended at all with his choice of words, and quite honestly there has been MUCH worse with smaller reaction.  So, I'm pretty confused on all of this.

As for all of the research with Michael, Royce and Pete, yes, we know.  Some people make it sound like NO ONE else has lifted a finger in the reasearch dept in regards to ch therapy...if anything, I find THAT is disrespectful and narrow-minded. 

I don't like pissing matches and I certainly don't like someone being belittled simply because they choose to use another therapy OTHER than O2. 

Funny...Linda didn't mention Family Services once in this thread...and she never said she was alone in this fight, in fact NO ONE has...as NO ONE EVER should.

Thanks Batch for clearing up Michael's comment.....again.

So I guess the message I posted below about username/password sharing wasn't clear enough...


DJ wrote on May 24^th, 2009 at 9:12am:

It seems I need to post a quick reminder to ensure everyone knows that username/password sharing is a violation of the user registration agreement and will not be tolerated. If anyone has any questions about this policy, please PM or email me directly. Enough said.

Seems I need to clarify the limits of this to people copying and pasting something into one's own posts that was clearly written by someone else.

Multiple Profiles - If you create multiple profiles in order to confuse, deceive, or otherwise present a false identity to the members of this forum, all profiles are subject to removal as seen fit by the ClusterHeadaches.com Administrator.

Am I clear?

DJ

bejeeber wrote on Sep 1^st, 2009 at 1:37am:

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2: Do you hyperventilate the O2? Yes Do you use any other special breathing technique (e.g., taking deep breaths)  I make sure to take deep, full breaths and exhale for the same amount of time What flow rate are you using?  15lpm for shadows. 25lpm for hits. How long on average do you breathe the O2 when aborting an attack?  5 min after the pain is gone.  This can take anywhere from 5-15 minutes. Approximately what percentage of hits are you able to successfully abort with O2?  >90% Can you actually abort a wake up from a deep sleep K7+ hit with O2?  Eventually but it may take two attempts of 15 minutes each at 25lpm. Do you experience rebounds? If so, about how soon after aborting an attack?  This varies cycle to cycle.  When they do reoccur it usually happens within half an hour. Do you remove your mask (or mouthpiece) for each exhalation?  Yes Thanks!

[quote][/quote]
Do you hyperventilate the O2?
YES
Do you use any other special breathing technique (e.g., taking deep breaths)
YES sit up straight and deep in and out.
What flow rate are you using?
25-60lpm.
How long on average do you breathe the O2 when aborting an attack?
3 to 7 minutes.
Approximately what percentage of hits are you able to successfully abort with O2?
96-99%
Can you actually abort a wake up from a deep sleep K7+ hit with O2?
YES.
Do you experience rebounds? If so, about how soon after aborting an attack?
NO. sometimes reattacks if not on the O2 long enough.
Do you remove your mask (or mouthpiece) for each exhalation?
NO. I use the O2PTI mask and it is designed to exhale with the mask on.

Today's understanding of what we can do with O2 is a giant leap from what was believed just a few short years ago.

Michael,

I understand your frustration, I know something big is about to be released. Sometimes Americans can be a little hard to understand.

Don

A questionnaire specifially for you hot rodders on here with the high flow regulators, but I'd also love to hear from anyone who is having results with O2:

Do you hyperventilate the O2?  Not really

Do you use any other special breathing technique (e.g., taking deep breaths)? I hold the opposit nostril at times and breath in deeply into the right side...my cluster side.  Kind of like snorting the O2. 

What flow rate are you using?  15L

How long on average do you breathe the O2 when aborting an attack?  Depending on how strong the hit is, from 5-15 minutes usually.

Approximately what percentage of hits are you able to successfully abort with O2? I guess I'd say over 90%...

Can you actually abort a wake up from a deep sleep K7+ hit with O2? Usually.

Do you experience rebounds? If so, about how soon after aborting an attack?  Yes...if you call them rebounds.  5 hits per night is usual for me in the middle of cycle.

Do you remove your mask (or mouthpiece) for each exhalation?  No as I only have the 15L and I just breath deep long breaths.

Thanks!
You're welcome!

Karen

Do you hyperventilate the O2? Usually

Do you use any other special breathing technique (e.g., taking deep breaths)  Deep breaths

What flow rate are you using? 15 to 25 lpm

How long on average do you breathe the O2 when aborting an attack? 5 to 15 minutes

Approximately what percentage of hits are you able to successfully abort with O2?99.999%

Can you actually abort a wake up from a deep sleep K7+ hit with O2? Yes.  Oxygen cylinder at bedside.

Do you experience rebounds? If so, about how soon after aborting an attack? No, but if I don't stay on Oxygen for five minutes past the abort, I may not have "killed" it.

Do you remove your mask (or mouthpiece) for each exhalation?  No, not usually.

The real question here is: Who has an extra 25 LPM regulator they can send Pixie-elf ?

Pixie I apologise in advance for taking this liberty with your post but someone must have a spare they can send you.

I've had a some people help me out with this current cycle and someone will come along and help you out as well. You know why?

Because once you get beyond the thin skin and ultra sensitive easily offended individuals thats what this website is really all about.

Helping a fellow sufferer.

BRAVO ! :)

seaworthy wrote on Sep 10^th, 2009 at 6:46pm:

The real question here is: Who has an extra 25 LPM regulator they can send Pixie-elf ?

Pixie-elf, check your PM's ....