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Sean C

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The o2 discussion page here
Feb 9^th, 2009 at 9:39pm

I have had great success with o2 therapy, however, I feel the directions for o2 therapy are incorrect.

First and foremost, discuss o2 therapy with your doctor. This professional is responsible for your well being, and should be informed of your interest.

Second, 15 LPM is not a required amount of flow. The "bag" on your non breather mask is an indication of how much o2 you need. Rule of thumb is, if your bag is 1/2 to 3/4's full during use, you are at the correct LPM for you. If your bag is always full, your regulator is too high and an overflow of o2 will fill your mask, causing the o2 to leak out the sides without you breathing it, thus you are basically wasting it. This is very important if you are "self" pay. If your bag is collapsed, you need to increase flow etc etc.

Third, a bubbler attachment will help with dryness, however, the "bag" will trap moisture, which will cause mold and begin to "smell" over time.

My forth and last comment is that 100% o2 inhaled 100% over long extended periods has not been proven harmless.

Anyone comments would be appreciated.

Sean.................

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« Last Edit: Feb 9^th, 2009 at 9:40pm by Sean C »

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FramCire

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Re: The o2 discussion page here
Reply #1 - Feb 9^th, 2009 at 9:50pm

Sean, I am hardly an expert but if my bag starts to fill up, I tend to breathe deeper and faster and find that it helps me abort better. While I do not disagree, I think the flow rate is more dependent on what it takes to be successful for you. I have had success at times under 15 but other times I have turned it up. Either way I know if my bag is 3/4 or more filled I am not breathing enough.

Does that make sense?

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Sean C

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Re: The o2 discussion page here
Reply #2 - Feb 9^th, 2009 at 9:57pm

Not really Eric. 75 LPM would do the same thing. The key to using the "clustermasx", and I say that only because I don't have the new model, is your breathing in exactly whats in that "bag" which is 100% o2, and whats coming out of your tank. Nothing more, nothing less. There are no inlets for the outside air.

If the bag is full to 100% capacity, your regulator is too high, and your not getting anymore o2 than if it was 3/4 full on a lesser LPM.

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« Last Edit: Feb 9^th, 2009 at 9:59pm by Sean C »

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: The o2 discussion page here Reply #3 - Feb 9^th, 2009 at 10:21pm A belated "Hey Sean, GOOD to hear from you again!" Appreciate the input, Quote: I have had great success with o2 therapy, ... !!!!! Attention-getter and a good read.
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Sean C

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Re: O2ptimask Kits Now Available!
Reply #4 - Feb 9^th, 2009 at 9:21pm

Deej and Steph, I say this in the most respective way.

I have had great success with o2 therapy, however, I feel the directions for o2 therapy are incorrect.

First and foremost, discuss o2 therapy with your doctor. This professional is responsible for your well being, and should be informed of your interest.

Second, 15 LPM is not a required amount of flow. The "bag" on your non breather mask is an indication of how much o2 you need. Rule of thumb is, if your bag is 1/2 to 3/4's full during use, you are at the correct LPM for you. If your bag is always full, your regulator is too high and an overflow of o2 will fill your mask, causing the o2 to leak out the sides without you breathing it, thus you are basically wasting it. This is very important if you are "self" pay. If your bag is collapsed, you need to increase flow etc etc.

Third, a bubbler attachment will help with dryness, however, the "bag" will trap moisture, which will cause mold and begin to "smell" over time.

My forth and last comment is that 100% o2 inhaled 100% over long extended periods has not been proven harmless.

Just my Smiley

, I'm not trying to rain on anybodys parade. Take it or leave it.

Sean........................................

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« Last Edit: Feb 9^th, 2009 at 9:24pm by Sean C »

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Marc

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Re: O2ptimask Kits Now Available!
Reply #5 - Feb 9^th, 2009 at 9:30pm

Sean C wrote on Feb 9^th, 2009 at 9:21pm:

Deej and Steph, I say this in the most respective way.

I have had great success with o2 therapy, however, I feel the directions for o2 therapy are incorrect.

First and foremost, discuss o2 therapy with your doctor. This professional is responsible for your well being, and should be informed of your interest.

Second, 15 LPM is not a required amount of flow. The "bag" on your non breather mask is an indication of how much o2 you need. Rule of thumb is, if your bag is 1/2 to 3/4's full during use, you are at the correct LPM for you. If your bag is always full, your regulator is too high and an overflow of o2 will fill your mask, causing the o2 to leak out the sides without you breathing it, thus you are basically wasting it. This is very important if you are "self" pay. If your bag is collapsed, you need to increase flow etc etc.

Third, a bubbler attachment will help with dryness, however, the "bag" will trap moisture, which will cause mold and begin to "smell" over time.

My forth and last comment is that 100% o2 inhaled 100% over long extended periods has not been proven harmless.

Just my Smiley

, I'm not trying to rain on anybodys parade. Take it or leave it.

Sean........................................

I would think that this is not the thread to have this discussion. If you would like to put this under its own thread, I would be happy to debunk much of what you've said.

Respectfully,
Marc

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Sean C CH.com Alumnus Offline I Love CH.com! Posts: 123 Earth Gender:	Re: O2ptimask Kits Now Available! Reply #6 - Feb 9^th, 2009 at 9:36pm I agree to a discussion in another thread, however, I would prefer leaving the original post here for now. Agreed?
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DJ YaBB Administrator Offline Boyz Rule! Posts: 7480456 Wichita, KS Gender:	The o2 discussion page here Reply #7 - Feb 9^th, 2009 at 10:27pm *The last 3 Posts were moved here from General Posts* by DJ.**
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BMoneeTheMoneeMan

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Re: The o2 discussion page here
Reply #8 - Feb 9^th, 2009 at 10:48pm

I kind of hear what you are saying about the bag, Sean, but I use it differently. Like RJ does, I use a huge bag on my system. The bag is so big it holds more than 1 large full breath of air. I think its 2 gallons.
One of the reasons I like the huge bag is that it doesnt overflow. I can take a huge breath, hold it and release slowly while the bag is filling up again. In using the large bag in this way, I never overbreathe the regulators. I can go to 30LPM to fill the bag up fast and then turn it down to whatever I need.
There is NO worse feeling than needing O2 and having to wait for a slow regulator. While I generally use it at 10 to 20lpm, the ability to go to 30lpm is a big reason why O2 started working for me again. You cannot get large, deep, rapid breaths with 15lpm unless you are the size of Linda Howell or something.

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AlienSpaceGuy

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Re: The o2 discussion page here
Reply #9 - Feb 9^th, 2009 at 10:49pm

Sean, to your third remark I'd like to add this:

I never had moisture in my bag. If that happens you've probably too much water in your bubbler. If there is a mark on the container, it indicates the maximum fill level, not the minimum.

I use demineralized water, the kind that is sold for the steam iron and to top up the car battery. Apparently, it doesn't contain mold spores Wink

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ClusterChuck

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Re: The o2 discussion page here
Reply #10 - Feb 10^th, 2009 at 12:22am

Sean, there is so much in your thread ...

Sean C wrote on Feb 9^th, 2009 at 9:39pm:

First and foremost, discuss o2 therapy with your doctor. This professional is responsible for your well being, and should be informed of your interest.

Yes, I agree, you should discuss it with your doctor, BUT, there are a lot of doctors that do not know about the advantages of pure oxygen, and you have to go to another doctor, or even go behind their backs.

Sean C wrote on Feb 9^th, 2009 at 9:39pm:

Second, 15 LPM is not a required amount of flow. The "bag" on your non breather mask is an indication of how much o2 you need. Rule of thumb is, if your bag is 1/2 to 3/4's full during use, you are at the correct LPM for you. If your bag is always full, your regulator is too high and an overflow of o2 will fill your mask, causing the o2 to leak out the sides without you breathing it, thus you are basically wasting it. This is very important if you are "self" pay. If your bag is collapsed, you need to increase flow etc etc.

As far as not needing to go higher than the 15LPM, or even not as high, it is totally dependent on the user. There are some, on this site, that are able to abort, successfully, at only 8LPM, and that is GREAT!

BUT, those are in the minority. Most need AT LEAST 15LPM. Many need to go higher. Not saying that these people cannot abort at 15LPM, but it can be done SO much quicker, at a higher LPM.

There are also those that CANNOT abort at 15, but can at the higher flow rate.

I am not sure about all the reasons (I am NOT a doctor or scientist), but I feel it has to do with several factors:
Lung size
Lung expansion capability
Lung condition
PH levels
Amount of CO₂ in the system, and being produced
Strength and elasticity of vasal bodies
And probably many other conditions, too.

We have found that hyperventilating pure oxygen has amazing abortive capabilities. It forces you to stop producing CO₂, which is a major vasal dilator. By having low to no CO₂ and an excess of O₂ you have tremendous vasal constriction, thus cluster headache aborting. We have shown that in many cases, myself for instance, we have cut the abort time from around 20 minutes, to less than 7 minutes, some even at 4 minutes! THAT is a AMAZING improvement! The quicker the abort, the easier it is to live our lives in a normal mode.

I agree with the statement that if your bag stays full, the flow rate is too high. BUT, if you are breathing properly, there is NO WAY that the bag can remain full!

By breathing in, and then holding it, and waiting for the bag to fill again, you are not slowing the production of CO₂. You need to breath deep, and fast, in order to do that, and that cannot be done with 15LPM.

Sean C wrote on Feb 9^th, 2009 at 9:39pm:

Third, a bubbler attachment will help with dryness, however, the "bag" will trap moisture, which will cause mold and begin to "smell" over time.

Yes, this is true. If you regularly clean your equipment, you will prevent this from happening. This is one of the reasons that many of us have given up using the bubbler. It is a lot easier to stop for a second, and grab a swig or two of water.

Sean C wrote on Feb 9^th, 2009 at 9:39pm:

My forth and last comment is that 100% o2 inhaled 100% over long extended periods has not been proven harmless.

This is flat out wrong. The military has had its fighter pilots breathing 100% oxygen for two or more hours, straight, while they fly their missions. They have been doing this for 60 or more years. The military would NOT do this, if it was dangerous. They have studied it MANY times, and found no ill effects.

Remember, I am NOT a doctor or scientist, but this is the result of my reading, and personal experience.

Chuck

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BarbaraD

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Re: The o2 discussion page here
Reply #11 - Feb 10^th, 2009 at 7:36am

Sean,

I'm just a little old granny from East Texas and I don't try to analyze the whys and whyfores of much of anything. But I do know that O2 on HIGH levels (60 liters with a demand valve) with me hyperventalating WORKS for me to abort a CH in very little time as compared to years of waiting forever at lower levels and taking meds along with it.

I just know that since August I'm doing a lot better than I have in years. Pete and Chuck have tried to explain it to me as to why it's working so well, but I'm old and can't understand all that technical stuff - I just know it's working and I'm more pain free faster than I've been in years and years and don't have any side effects.

My neuro is very happy with the results of this new therapy and told me to keep it up, so I bow to his wisdom (and learning from the O2 masters on this site).

One thing we've all learned from this site is "What works for you - do it!" We're all seeking PF time....

Hugs BD

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Sean C

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Re: The o2 discussion page here
Reply #12 - Feb 10^th, 2009 at 9:23am

Sean C wrote on Feb 9^th, 2009 at 9:39pm:

My forth and last comment is that 100% o2 inhaled 100% over long extended periods has not been proven harmless.

This is flat out wrong. The military has had its fighter pilots breathing 100% oxygen for two or more hours, straight, while they fly their missions. They have been doing this for 60 or more years. The military would NOT do this, if it was dangerous. They have studied it MANY times, and found no ill effects.

Remember, I am NOT a doctor or scientist, but this is the result of my reading, and personal experience.

Chuck

Chuck, flat out wrong? Where?

I use an enormous amount of o2 too. My doc does not approve of our therapy, just for the record. He gives me one script for o2, and my oxygen supplier, who I will not mention gives me as much as I want, as long as I self pay, afterall they are a business, not medical professionals. Why do I do this? Because it gives me relief, and clusters hurt and I'd do it even if it did do damage. Is it harming my organs or their tissues? I can not say it isn't. But I would like to know for my own piece of mind. The link below isn't an answer, it’s a small study, however, lots of additional links you can read. Most relate to atmospheric pressure and 100% oxygen damage, which is not part of our therapy, but still worth reading.

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Do any oxygen suppliers have external links to 100% o2 usage and its long term effects on mammalians with healthy lungs?

Can anyone post some links to factual medical studies?

Ueli you nailed it, I did clean it with soap and water, but like Chuck or someone said, its easier just take a sip of water from the bottle if needed. Great to see you posting Ueli !!!! Smiley

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« Last Edit: Feb 10^th, 2009 at 9:26am by Sean C »

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Marc

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Re: The o2 discussion page here
Reply #13 - Feb 10^th, 2009 at 2:10pm

Hi Sean,

I think that your comments and concerns are well founded, but as I see it:

Long term pure O2 exposure is in fact not good. The key point is – how long? I have yet to find anything anywhere indicating potential problems with breathing pure O2 for 5-7 minutes at atmospheric pressure. I can only find references to harmful effects at many hours and/or at higher partial pressures. All of this is of course predicated on persons without other medical (pulmonary) problems!

As a 12 year chronic sufferer, I found that breathing O2 at very high volumes will kill virtually very hit in 5-7 minutes, vs. 15-20 minutes at “standard breathing” rates. Even the article you linked refers to usage at higher partial pressures and “long term” usage. Have I found a study to qualify high flow for 5-7 minutes at a time? Nope, but every single article I found talks about the dangers of LONG term exposure in terms of hours and days. I personally like the “exposure time” being reduced by using high flow for very short duration per event.

For years, I was frustrated and irritated by folks dictating flow rate. You may recall Dennis O'Conner (Den) fighting this cause. I agree that if the bag overinflates, O2 is escaping being wasted. No doubt about that! When folks say 12-15 LPM, there is an indirect statement behind that advice: Breathe fast enough to keep the bag from overinflating.

Typical “tidal volume” of breathing at rest is about 0.5Liters and 15-20 breaths per minute, so that would be 7.5-10 liters per minute. Yes, I can abort many hits by breathing 100% O2 at 12-15 LPM, but it takes a looong time and doesn’t always work.

I too am “self pay”, but I noticed that I wasn't using more O2 when I went to high flow:
25LPM x 7 minutes = 175 Liters used per hit
12LPM x 15 minutes = 180 Liters used per hit (and 20+ minutes was common)

I do not challenge that some folks can abort a hit in 5 minutes flat with 8 LPM. God bless them, but that just isn’t true for many of us. Posting a guideline for a 15LPM regulator is just that – a starting point. Many, many people (including me) have said that O2 “doesn’t work for me” simply because they didn’t use a high enough flow rate to meet their needs. It's been a long battle to get the medical community to see this, but progress is being made. Of course everyone should work closely with their health care professional.

On the bubbler issue: You bet, cleanliness is a basic requirement for most things. If you don't clean it, you will grow mold/mildew - no argument there. I personally don't use one because I'm lazy.

One of the "high flow" advocates asked me why I was fighting something that I had never tried. I will say that my whole world has literally changed since I learned just how well and how fast high flow works for me.

Hope you are doing well!

Marc

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Skyhawk5

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Re: The o2 discussion page here
Reply #14 - Feb 12^th, 2009 at 2:33am

The Oxygen information page does state " you and your physician are ultimately responsible for your care." The info is the most current available for CH sufferers. Many Doctors still Rx nasal canulas, so it doesn't suprize me if one doesn't approve of high flow O2.

If military pilots use it for hours at a time, just how much damage can a few minutes do?? I really don't think we need to go back to 8 lpm's do we? Progress is being made so please excuse us while we continue.....

Don

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wildhaus CH.com Alumnus Offline Posts: 860 Wildhaus\|Switzerland Gender:	Re: The o2 discussion page here Reply #15 - Feb 12^th, 2009 at 6:10am Sean, (& all) do go over this doc. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Michael
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