CPAP Basics - 4

[SleepWellCPAP]

Continued from CPAP Basics – 3 – jnk post

…. After a long chat with the new homesteader and feeling comfortable that he’d done his best to help, the slicker noticed a Sheriff sidling ever so slowly his way. For fear he might have come across as just another town hopping slang-whanger or saddle bum, the slicker edged off to the side to let the Sheriff pass.

Much to his surprise the Sheriff stopped short and addressed him directly and without hesitation he said, “I say stranger, you’re new to these here parts are you? Been watchin’ a spell and you seem to have quite a gritty gift for gab. Round here, the cowboys are ole fashioned and don’t believe anyone has the right to own or sell what was meant to be free! And that includes ideas about how cowboys should be cowboys!”

“The name’s Sheriff Bob”, he continued to address the slicker. “Who might you be, and why is it you seem to be missing all those good chances to shut up?”

“The names Book-Seller Jim”, said the slicker, “The pleasure’s all mine. Stopped by to water my horse Betsy ‘n noticed you all had quite a spirited saloon here. As far as giving away ideas for free, that exactly what I have been doing. Though for two bits, a man can buy to whole shootin’ match, and not have to listen to me rattle, eventually I’ll read off everything contained in that little book anyway. Don’t know how much freer that you can get. But you can’t tell that to some of those ornery ones over there. Heck, they got mad enough to swallow a horn toad backwards. I take my hat off to their knowledge for sure, but they’ve got the personality of a rattlesnake’s been stepped on.”

After a short time of contemplation, Sheriff Bob and Book-Seller Jim came to an understanding. What was going on would benefit all in the long run and the very difficult skills of cowboying would be made better and more accessible through cooperation.

“Thanks for the offer of a beer Sheriff Bob”, said Book-Seller Jim, “Depending on how this post goes, we might need somethin’ a little stronger than that!”

---------------

Hello All,

Many thanks to jnk for starting that story! With his help and those of the many positive posters, I think we’re on the right track.

This weeks question:

What to you believe to be the fourth most important concern for a new CPAP user?

In my opinion, it is patience with your device and therapy overall. Simple enough, but you just wouldn’t believe how many people give up prior to discovering if pressure therapy will work for them or not. For instance, it takes a PAP patient at least 3 days with a mask, per mask, and up to 7 days depending on the style. Surprisingly, nasal pillow types are the ones that take the longest in my experience.

Thanks in advance for all your comments, thoughts and suggestions.

Have a great day!

Jim

[Jimster]

Whether it's 4, 3 or 1 that is the most important, and I'm sure they all are, I would think what the most important part of CPAP would be different for just about all New CPAP'ers.

I believe it is what we run into when we begin with needing CPAP therapy. Let's say our Doctor is out of Key so to speak. He knows we need the hose but he's not into all the new equipment, so he leaves it up the DMEs to support your therapy correctly. Then let's say that the DME is too busy or not up to par with some others and here again you meet up with an Ongoing Lacking.

Do you have a computer? I take it for granted for most CPAP'ers have the internet, and I know they don't, but today that's how most of us think. So here again we have New CPAP'ers starting out with different advantages, or disadvantages than others. So with that being said what's important to one may not be all that important to another.

I'm not sure that there is an orderly top 10 of the most important issues to connecting up with your CPAP Therapy, but I do get your point as to your questions. Anytime that we are ask to think about what we are doing as you are asking us to do is in itself very important.

If you don't mind every time you ask what's the next most important number list the ones that you have already gone over so I can catch up.

[Todzo]

Learning to modify lifestyle to facilitate working xPAP therapy!

[SleepWellCPAP]

Hello All,

Thanks much for the replies so far!

1. Cleanliness and mask fit. 2. Tube control. 3. Humidification and this weeks #4. Patience.

Of course, I hear what you are saying. Each one is important and could be number one. Over the years of working with pressure therapy patients, this was the order of those items. Back in statistics class we talked about regression analysis. You had to assign a numeric probability to a set of unknowns. When you did that, it became a little clearer what you should focus on first if you wanted to be successful. That's basically what I have done with CPAP instruction.

Thanks again for the post!

Jim

[chunkyfrog]

I don't know where this stands on the "list", but communication is vital;
Not only does the patient need to understand the need for treatment, and the consequences of not doing so,
but caregivers need to listen to discover what is or is not working with therapy.
This may take more time than the usual DME salesperson is allotted per patient, which means there needs to
be other sources of support.
The handout I received from the respiratory doc was a pre-packaged script from Diagnosis One, which listed three
sites for "more information": Mayoclinic, sleepfoundation, and the NIH. (anybody take questions, or are open 24/7?)
A suggestion to at least Google "apnea" or CPAP, would be in line, I think.
(That was how I wandered into this outfit.)

[Todzo]

From where I stand

#1 is starting the process of xPAP education
#2 is starting the process of learning to deal with the pressure
#3 is starting the continuing process of establishing and maintaining proper titration
#4 is learning to modify lifestyle to facilitate working xPAP therapy

What follows was written about a year ago but gives an idea of what I am talking about:

I have come to believe that the threshold at witch PAP pressure will prevent apneas is constantly in motion.

I really have come to like my simple strategy of using CPAP and finding a good "sweet spot" between the level of pressure to prevent obstruction and the level of pressure which would induce unstable breathing. I believe I have learned that lifestyle changes facilitate the growth of that "sweet spot" - indeed currently 8 handles my AHI and unstable breathing would likely begin at 13. After reading about it I am much more afraid of unstable breathing than AHI so a machine which does not automatically raise pressure makes more sense to me. As well, I think it is easer for my body to respond to a constant rather than a moving object. I simply believe that with CPAP I have the greatest chance at the highest quality of sleep.

So now, if the pressure is too low you will have events. Not good. Indeed one of the not good things is that the Central Nervous System is ratcheted up moving the threshold for unstable breathing down.

If the pressure is high enough to cause breathing instability, well the extra air used may well irritate the airway passage resulting in Obstructive events (AHI), and/or may bring about periodic breathing, will likely cause arousals due to the extra breathing effort, may well turn into hypocapnic central apneas, and frankly will cause so much trouble that after reading a lot about them I am more scared of unstable breathing than I am of OSA. Very not good!

Any events you have will likely cause more and more events as the night progresses due to the ratcheting up of the central nervous system.

The very tricky thing is - the threshold where the OSA would be prevented by pressure may be or become past the point where unstable breathing occurs - if so - you really do need a better machine[2] or EERS[1]. So, if you can reduce your need for pressure and decrease your tendency toward unstable breathing - you can use CPAP which is the most likely to yield the best long term results for you (I have used strait CPAP over nine years).

Things I have found tend to reduce my tendency toward unstable breathing:

1. Reduce Stress!!!! This is definitely the top of the list, most important thing. Stress ratchets up the central nervous system (CNS) which is one of the "inputs" if you will alongside the "outputs" from the O2 and CO2 sensors - all feeding into the brains "calculator" whose output will drive breathing. If you can keep the CNS drive signal a bit lower you will breath less and have more stable breathing.
2. Aerobic Exercise and especially, if your doctor approves, a bit of 85% of Maximum Heart Rate Interval Training included. Breathing stability is all about breathing reflexes (they often call them chemoreflexes – reactions to changes in the amounts of oxygen and carbon dioxide in the blood). Place the body under load and you give them a workout. Place them under heavy load, even better. I have also noted that making close to my 10,000 steps a day at a less than aerobic pace helps with sleep in general. Also you might ask me about Pulse Oximeter Guided Breathing.
3. Staying away from violent media (TV, video games, etc...). These tend to stimulate the central nervous system like real stress (see #1).
4. Reduce simple carbs and stimulants near bed time.
5. Start CPAP use with quiet breathing always (well ok, I calm myself starting every night – it always wants to take off).

So hopefully doing the above will move the unstable breathing threshold up (would be induced at a higher pressure).

Things I have found move the Obstructive Apnea Prevention Pressure need down:

1. Reduce Stress!!! Stress tends to cause an inflammatory reaction in the body – inflamed airway tends to collapse easier.
2. Raise the head of your bed a couple of inches (I use cheap concrete bricks from a building supply store - <$5 for both). I know of at least one doctor who recommends this for pressure issues. It does seem to make things better in general I have noticed in my own data, and is known to help prevent GERD. I also kind of think that if there is more blood near the feet there is less blood filling the tissues in the airway passage so less pressure needed to push them back.
3. Eat anti-inflammatory foods. Less inflammation, less OSA.
4. Stay away from processed foods. I think just say no to GMOs. Stay away from preservatives. Take good care of your microbiome. I believe doing so will reduce inflammation so less OSA and less pressure needed to prevent OSA.
5. Take some cooking classes and start a long term relationship with a dietitian. Your body longs for good food prepared from scratch. Feed it well, it can better treat you well.

May we find increasingly better health!

Todzo

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

[LSAT]

From where I stand

#1 is starting the process of xPAP education
#2 is starting the process of learning to deal with the pressure
#3 is starting the continuing process of establishing and maintaining proper titration
#4 is learning to modify lifestyle to facilitate working xPAP therapy

What follows was written about a year ago but gives an idea of what I am talking about:

I have come to believe that the threshold at witch PAP pressure will prevent apneas is constantly in motion.

I really have come to like my simple strategy of using CPAP and finding a good "sweet spot" between the level of pressure to prevent obstruction and the level of pressure which would induce unstable breathing. I believe I have learned that lifestyle changes facilitate the growth of that "sweet spot" - indeed currently 8 handles my AHI and unstable breathing would likely begin at 13. After reading about it I am much more afraid of unstable breathing than AHI so a machine which does not automatically raise pressure makes more sense to me. As well, I think it is easer for my body to respond to a constant rather than a moving object. I simply believe that with CPAP I have the greatest chance at the highest quality of sleep.

So now, if the pressure is too low you will have events. Not good. Indeed one of the not good things is that the Central Nervous System is ratcheted up moving the threshold for unstable breathing down.

If the pressure is high enough to cause breathing instability, well the extra air used may well irritate the airway passage resulting in Obstructive events (AHI), and/or may bring about periodic breathing, will likely cause arousals due to the extra breathing effort, may well turn into hypocapnic central apneas, and frankly will cause so much trouble that after reading a lot about them I am more scared of unstable breathing than I am of OSA. Very not good!

Any events you have will likely cause more and more events as the night progresses due to the ratcheting up of the central nervous system.

The very tricky thing is - the threshold where the OSA would be prevented by pressure may be or become past the point where unstable breathing occurs - if so - you really do need a better machine[2] or EERS[1]. So, if you can reduce your need for pressure and decrease your tendency toward unstable breathing - you can use CPAP which is the most likely to yield the best long term results for you (I have used strait CPAP over nine years).

Things I have found tend to reduce my tendency toward unstable breathing:

1. Reduce Stress!!!! This is definitely the top of the list, most important thing. Stress ratchets up the central nervous system (CNS) which is one of the "inputs" if you will alongside the "outputs" from the O2 and CO2 sensors - all feeding into the brains "calculator" whose output will drive breathing. If you can keep the CNS drive signal a bit lower you will breath less and have more stable breathing.
2. Aerobic Exercise and especially, if your doctor approves, a bit of 85% of Maximum Heart Rate Interval Training included. Breathing stability is all about breathing reflexes (they often call them chemoreflexes – reactions to changes in the amounts of oxygen and carbon dioxide in the blood). Place the body under load and you give them a workout. Place them under heavy load, even better. I have also noted that making close to my 10,000 steps a day at a less than aerobic pace helps with sleep in general. Also you might ask me about Pulse Oximeter Guided Breathing.
3. Staying away from violent media (TV, video games, etc...). These tend to stimulate the central nervous system like real stress (see #1).
4. Reduce simple carbs and stimulants near bed time.
5. Start CPAP use with quiet breathing always (well ok, I calm myself starting every night – it always wants to take off).

So hopefully doing the above will move the unstable breathing threshold up (would be induced at a higher pressure).

Things I have found move the Obstructive Apnea Prevention Pressure need down:

1. Reduce Stress!!! Stress tends to cause an inflammatory reaction in the body – inflamed airway tends to collapse easier.
2. Raise the head of your bed a couple of inches (I use cheap concrete bricks from a building supply store - <$5 for both). I know of at least one doctor who recommends this for pressure issues. It does seem to make things better in general I have noticed in my own data, and is known to help prevent GERD. I also kind of think that if there is more blood near the feet there is less blood filling the tissues in the airway passage so less pressure needed to push them back.
3. Eat anti-inflammatory foods. Less inflammation, less OSA.
4. Stay away from processed foods. I think just say no to GMOs. Stay away from preservatives. Take good care of your microbiome. I believe doing so will reduce inflammation so less OSA and less pressure needed to prevent OSA.
5. Take some cooking classes and start a long term relationship with a dietitian. Your body longs for good food prepared from scratch. Feed it well, it can better treat you well.

May we find increasingly better health!

Todzo

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

Great post Todzo...You should write a book!

[Todzo]

From where I stand

#1 is starting the process of xPAP education
#2 is starting the process of learning to deal with the pressure
#3 is starting the continuing process of establishing and maintaining proper titration
#4 is learning to modify lifestyle to facilitate working xPAP therapy

What follows was written about a year ago but gives an idea of what I am talking about:

I have come to believe that the threshold at witch PAP pressure will prevent apneas is constantly in motion.

I really have come to like my simple strategy of using CPAP and finding a good "sweet spot" between the level of pressure to prevent obstruction and the level of pressure which would induce unstable breathing. I believe I have learned that lifestyle changes facilitate the growth of that "sweet spot" - indeed currently 8 handles my AHI and unstable breathing would likely begin at 13. After reading about it I am much more afraid of unstable breathing than AHI so a machine which does not automatically raise pressure makes more sense to me. As well, I think it is easer for my body to respond to a constant rather than a moving object. I simply believe that with CPAP I have the greatest chance at the highest quality of sleep.

So now, if the pressure is too low you will have events. Not good. Indeed one of the not good things is that the Central Nervous System is ratcheted up moving the threshold for unstable breathing down.

If the pressure is high enough to cause breathing instability, well the extra air used may well irritate the airway passage resulting in Obstructive events (AHI), and/or may bring about periodic breathing, will likely cause arousals due to the extra breathing effort, may well turn into hypocapnic central apneas, and frankly will cause so much trouble that after reading a lot about them I am more scared of unstable breathing than I am of OSA. Very not good!

Any events you have will likely cause more and more events as the night progresses due to the ratcheting up of the central nervous system.

The very tricky thing is - the threshold where the OSA would be prevented by pressure may be or become past the point where unstable breathing occurs - if so - you really do need a better machine[2] or EERS[1]. So, if you can reduce your need for pressure and decrease your tendency toward unstable breathing - you can use CPAP which is the most likely to yield the best long term results for you (I have used strait CPAP over nine years).

Things I have found tend to reduce my tendency toward unstable breathing:

1. Reduce Stress!!!! This is definitely the top of the list, most important thing. Stress ratchets up the central nervous system (CNS) which is one of the "inputs" if you will alongside the "outputs" from the O2 and CO2 sensors - all feeding into the brains "calculator" whose output will drive breathing. If you can keep the CNS drive signal a bit lower you will breath less and have more stable breathing.
2. Aerobic Exercise and especially, if your doctor approves, a bit of 85% of Maximum Heart Rate Interval Training included. Breathing stability is all about breathing reflexes (they often call them chemoreflexes – reactions to changes in the amounts of oxygen and carbon dioxide in the blood). Place the body under load and you give them a workout. Place them under heavy load, even better. I have also noted that making close to my 10,000 steps a day at a less than aerobic pace helps with sleep in general. Also you might ask me about Pulse Oximeter Guided Breathing.
3. Staying away from violent media (TV, video games, etc...). These tend to stimulate the central nervous system like real stress (see #1).
4. Reduce simple carbs and stimulants near bed time.
5. Start CPAP use with quiet breathing always (well ok, I calm myself starting every night – it always wants to take off).

So hopefully doing the above will move the unstable breathing threshold up (would be induced at a higher pressure).

Things I have found move the Obstructive Apnea Prevention Pressure need down:

1. Reduce Stress!!! Stress tends to cause an inflammatory reaction in the body – inflamed airway tends to collapse easier.
2. Raise the head of your bed a couple of inches (I use cheap concrete bricks from a building supply store - <$5 for both). I know of at least one doctor who recommends this for pressure issues. It does seem to make things better in general I have noticed in my own data, and is known to help prevent GERD. I also kind of think that if there is more blood near the feet there is less blood filling the tissues in the airway passage so less pressure needed to push them back.
3. Eat anti-inflammatory foods. Less inflammation, less OSA.
4. Stay away from processed foods. I think just say no to GMOs. Stay away from preservatives. Take good care of your microbiome. I believe doing so will reduce inflammation so less OSA and less pressure needed to prevent OSA.
5. Take some cooking classes and start a long term relationship with a dietitian. Your body longs for good food prepared from scratch. Feed it well, it can better treat you well.

May we find increasingly better health!

Todzo

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

Great post Todzo...You should write a book!

Thanks LSAT,

What I would really like to do is to help establish xPAP College, online and on site with real instructors. Reading up on Non-profits, WordPress, and playing Power Ball with hope.

Have a great week!

Todzo

[porete]

I think patience to get used to treatment, getting the proper mask fit, and adjusting to something new on your face is a big part of success in the long run. You have to realize that it will take a while for everything to "click" into place. Lowering expectations and having patience, especially for the first few weeks, is crucial to long term cpap success.

[newsnore]

Continued from CPAP Basics – 3 – jnk post

This weeks question:

What to you believe to be the fourth most important concern for a new CPAP user?

In my opinion, it is patience with your device and therapy overall. Simple enough, but you just wouldn’t believe how many people give up prior to discovering if pressure therapy will work for them or not. For instance, it takes a PAP patient at least 3 days with a mask, per mask, and up to 7 days depending on the style. Surprisingly, nasal pillow types are the ones that take the longest in my experience.

Thanks in advance for all your comments, thoughts and suggestions.

Have a great day!

Jim

Yes, but what helps patients have patience. I believe it is fellow feeling - hearing other peoples experiences on this forum - did more for me than the sleep professionals telling me to just keep patient and persevere - maybe try a new mask or some adjustment here or there, and a pat on the back, a smile and a "you'll be ok, just keep at it. I will see you in 4 weeks time" is all very necessary but is not what I call an ideal support system. You might make yourself more accessible to your patients Jim, but listening to members experiences on this forum tells me there are a lot of professionals who aren't there for their for their customers when they are needed.

So - for the want of new string on my violin - where is support (the 24/7 support that the likes of cpaptalk.com gives users) in your list? It ain't there as far as I can see (if it is, it isn't high enough on the list). Would it not be a very important part of any CPAP book, all the various support systems available outside of professional help.

[Todzo]

I don't know where this stands on the "list", but communication is vital;
Not only does the patient need to understand the need for treatment, and the consequences of not doing so, but caregivers need to listen to discover what is or is not working with therapy.

I sometimes think that all care givers should be forced to go without sleep for three days, given a hard day at work, and then be given an illness that "should" cause them to call a doctor. If you cannot think how can you communicate?!
If xPAP therapy is working no need to call. If it is not then the person is without brains or will to call.
The care givers need to understand this and know they need to take the initiative to find out how the person under treatment is doing!!!

This may take more time than the usual DME salesperson is allotted per patient, which means there needs to be other sources of support.
The handout I received from the respiratory doc was a pre-packaged script from Diagnosis One, which listed three sites for "more information": Mayoclinic, sleepfoundation, and the NIH. (anybody take questions, or are open 24/7?)
A suggestion to at least Google "apnea" or CPAP, would be in line, I think.
(That was how I wandered into this outfit.)

The DME, I suppose, was chosen to distribute xPAP equipment based on how things were being done at the time. This appears to have never worked.
I really do hope we can put it together to form xPAP College. I believe there is a very real need.
You have moved communication way up on my list chunkyfrog!
Have a great weekend!
Todzo

[jnk]

Just to be clear, the above words were written solely by Jim, not me. And the CPAP basics thread was initiated by Jim, not me.

The goofy little story that I wrote is located here: viewtopic.php?f=1&t=88163&st=0&sk=t&sd= ... 90#p809157

Sure glad I don't have to make my living by writing.

[SleepWellCPAP]

Hello All,

These really are words of wisdom. Thanks for all the post so far!

For Todzo: I wonder if Dr Dement would consider a course, I would imagine on-line, for comprehensive sleep instruction? You raise so many relevant and important points. Food for thought for sure, incredible post!

For Chunkyfrog: Communication is on the list, you have read it already I'm sure. It's in a little different format, but the goal is the same.

Thanks porete and jimster for the input, and for newsnore, your point about adding 24/7 support is very well taken and on my list.

For LSAT, by the way, I did study that and oh my gosh, enough said; I agree that Todzo should also write a book.

And for jnk, thanks for adding that link! I'm not as good 'bout workin' round these new fangled contraptions. Hope I took the story in an appropriate direction.

Great posts!

JIm

[jnk]

. . . for jnk, thanks for adding that link! . . .

I try to say helpful things, such as: "Don't forget your anniversary is in ten days." I'm helpful like that.

[carbonman]

Just to be clear, the above words were written solely by Jim, not me. And the CPAP basics thread was initiated by Jim, not me.
The goofy little story that I wrote is located here: viewtopic.php?f=1&t=88163&st=0&sk=t&sd= ... 90#p809157

Guilt by association.....

or is SleepWell a pen name?

...you try'n to raise $$$ for a new geetar,
you sick, twisted, story tell'n, mask wear'n, geetar freek?


.....or is SleepWell Straparatus on SSRIs.

I love the way each new "step" goes wild and spirals out of control.
It's like blowing up a balloon and then releasing it.

SleepWell,
You can take a shot, roll w/it and
come out for the next bell.
Something to be said for that.
God love you for trying.