For the CPAP manufacturers – a few suggestions

Wulfman... wrote:

Todzo wrote:

Wulfman... wrote:The PR System One HAS the large/mask leak alert (as have most all of the previous generations of Respironics machines).

Chances are you're not going to hear the alarm anyway.

So how could we improve the alarm to work better?

Design something that if you pull your mask off, it slaps you in the face or shocks/jolts you awake.

Honestly Den, have you become so oppressed by our current medical ways that you have become like those who oppress?!

Wulfman... wrote:Or, train yourself NOT to remove it.

During times of high stress in my life (Post Trumatic Stress from severe trauma) I have awaken to my heart beating out of my chest and breathing very hard. Such is the “long term facilitated hyperventilation” that affects many of us who are trying to use CPAP with high ventilatory control system gain[1].

I believe this is why many rip off their masks in the middle of the night. They may or may not be able to adapt well enough to CPAP to be able to use it. Indeed the usability data shows that many many find CPAP unusable.

An alarm that would help one get back to using CPAP sooner does sound like something that would help.

Wulfman... wrote:Tape, gloves, tube socks applied to the hands to make it more difficult.

Some need a bit of time away from the machine to stablize.

Wulfman... wrote:I've had sizable or Large Leaks that begin and end abruptly......and I don't want something disturbing me in between......I just want it to keep blowing air until the leak resolves itself.

Fine for you I guess. Perhaps not so much for others.

Wulfman... wrote:The actual act of "removing the mask" is pretty common with new users and most of them train themselves to stop it in short order. The majority don't know they're doing it and probably wouldn't wake up with an alarm anyway.......at least not the feeble ones these machines have in them.


Den

.

Perhaps a WiFi connected separately powered and more powerful alarm would work for those people. In other words, make the machine work better with the person, rather than trying to make the person work better with the machine. For goodness sake!

[1] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC

Todzo wrote:

Wulfman... wrote:

Todzo wrote:

Wulfman... wrote:The PR System One HAS the large/mask leak alert (as have most all of the previous generations of Respironics machines).

Chances are you're not going to hear the alarm anyway.

So how could we improve the alarm to work better?

Design something that if you pull your mask off, it slaps you in the face or shocks/jolts you awake.

Honestly Den, have you become so oppressed by our current medical ways that you have become like those who oppress?!

Wulfman... wrote:Or, train yourself NOT to remove it.

During times of high stress in my life (Post Trumatic Stress from severe trauma) I have awaken to my heart beating out of my chest and breathing very hard. Such is the “long term facilitated hyperventilation” that affects many of us who are trying to use CPAP with high ventilatory control system gain[1].

I believe this is why many rip off their masks in the middle of the night. They may or may not be able to adapt well enough to CPAP to be able to use it. Indeed the usability data shows that many many find CPAP unusable.

An alarm that would help one get back to using CPAP sooner does sound like something that would help.

Wulfman... wrote:Tape, gloves, tube socks applied to the hands to make it more difficult.

Some need a bit of time away from the machine to stablize.

Wulfman... wrote:I've had sizable or Large Leaks that begin and end abruptly......and I don't want something disturbing me in between......I just want it to keep blowing air until the leak resolves itself.

Fine for you I guess. Perhaps not so much for others.

Wulfman... wrote:The actual act of "removing the mask" is pretty common with new users and most of them train themselves to stop it in short order. The majority don't know they're doing it and probably wouldn't wake up with an alarm anyway.......at least not the feeble ones these machines have in them.


Den

.

Perhaps a WiFi connected separately powered and more powerful alarm would work for those people. In other words, make the machine work better with the person, rather than trying to make the person work better with the machine. For goodness sake!

Unfortunately, there are too many people who want "high tech" solutions (like, "there's an app for that") for simple problems which are solvable with "low tech" solutions. Or, said another way, they don't want to try using the "gray matter" that's holding their ears apart to solve their own problems. They want others to solve it for them.


Den

.

I agree with Todzo.

I have been complaining about the noise from my new PRS1 960 ASV since the first night.
They did replace the humidifier which I suspected was the source of the noise but no change.
I would also like a wifi option to obtain all the detailed info from the machine. That would minimize the incidence of forgeting to put the card back into the machine, which has happened periodically.

I also believe I own the info and should be the primary decision maker as to who gets to see it and who does not.
My primary docter has commented that he thought I went to a sleep lab to obtain the reports I bring him. He seems to have learned a lot in the year I have been seeing him. I suspect he has not only studied the reports but researched what they mean.

If anyone finds a way to communicate with PR I would be happy to jump on the band wagon.

bwexler wrote:I agree with Todzo.

I have been complaining about the noise from my new PRS1 960 ASV since the first night.
They did replace the humidifier which I suspected was the source of the noise but no change.

The normal procedure to measure how “quiet” a device is places a calibrated microphone about a foot away from the device. So, the noise generated by the fan and carried to your nose and/or mouth by the plastic tube is NOT part of that measurement.

I plan to obtain a sound pressure level meter and do some testing myself. It is the sound and vibration in the tube which is the problem after all.

bwexler wrote:I would also like a wifi option to obtain all the detailed info from the machine. That would minimize the incidence of forgeting to put the card back into the machine, which has happened periodically.

I also believe I own the info and should be the primary decision maker as to who gets to see it and who does not.

I even would like to see an option for an ethernet jack. I like to run without wifi in the house simply because I do not like to attract hackers. Running cable in the house on a separate (not internet connected) network would be the most secure and guaranteed private. Data is data and can be analyzed by whatever software becomes appropriate in the privacy of your own home.

bwexler wrote:My primary docter has commented that he thought I went to a sleep lab to obtain the reports I bring him. He seems to have learned a lot in the year I have been seeing him. I suspect he has not only studied the reports but researched what they mean.

In my little town it is hard to gain access even to a doctor with a sleep medicine background. It sounds like your doctor is willingly coming up to speed. I am glad for you.

bwexler wrote:If anyone finds a way to communicate with PR I would be happy to jump on the band wagon.

+10

In dealing with issues of high respiratory control system gain[3] acquired through Post Traumatic Stress (PTS) I have found it useful to use enhanced expiratory rebreathing space (EERS) on an “as needed” basis.

I often wonder if they ever continued to develop dynamic CO2 therapy[2].

So now I wonder if a little system could be developed to look at the flow data and add EERS if the minute volumes climb and remain high for a time. As they move back down it could be lessened and removed thus acting as a bumper but only present as needed. Sort of “dynamic EERS therapy”.

[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
[3] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC

Now you can purchase a 3D printer (that “prints” objects) for under $2000.00 on Amazon (see: http://www.amazon.com/s/ref=nb_sb_ss_i_ ... Caps%2C327 ). They are even making “disposable drones” with them now (see: http://www.zdnet.com/3d-printed-drone-u ... 000027839/ ).

So why not combine the new 3D scanning and 3D printing technologies to make masks that fit our particular faces?

On some of the masks I have had the strap system did not work very well. Indeed I needed to modify them to make them work with my particular body.

So perhaps the new 3D scanning technology along with some specially developed software could be made to design a strap system which will work very well for the specific person.

One would imagine! They are now using 3D scanning and then 3D printing to make
quick, inexpensive custom sockets for prosthetic limbs.

chunkyfrog wrote:One would imagine! They are now using 3D scanning and then 3D printing to make
quick, inexpensive custom sockets for prosthetic limbs.

I keep reading here such statements as "getting the right mask is the most important thing". And yes I can see that the mask really really needs to work!!

I think it would be wise to put some time and money in this direction. The "tools of the day" are so cool!!!

Todzo wrote:For the CPAP manufacturers – a few suggestions

1. Reduce the noise and vibration levels IN THE CPAP TUBE AND MASK.
2. Use “compressible airspace”.
3. If you “must” change pressure do it slowly.

Todzo, I did not see what machine you are using. With my ResMed S9 I do not hear any noise (and I have excellent hearing), and I have never experienced the other problems you described.

What machine are you using and how old is it?

wardmiller wrote:

Todzo wrote:For the CPAP manufacturers – a few suggestions

1. Reduce the noise and vibration levels IN THE CPAP TUBE AND MASK.
2. Use “compressible airspace”.
3. If you “must” change pressure do it slowly.

Todzo, I did not see what machine you are using. With my ResMed S9 I do not hear any noise (and I have excellent hearing), and I have never experienced the other problems you described.

What machine are you using and how old is it?

Before I actually tried the compressible air space which also notably reduces noise and vibration I probably would have said the same thing that you did. We tend to mask the noise that we hear all the time. It becomes “part of the background”. However I do believe it also becomes part of the stimulation of our central nervous system as well.

In spite of this I have seen the issue mentioned here several times - e.g. [1].

I think the greatest improvement noted by the experiment was a much more natural expiratory pressure.

I may post which machine I use when I do the "sound pressure levels in the tube" testing in the future but for now I value my privacy.

[1]:

bwexler wrote:I agree with Todzo.

I have been complaining about the noise from my new PRS1 960 ASV since the first night.
They did replace the humidifier which I suspected was the source of the noise but no change.
I would also like a wifi option to obtain all the detailed info from the machine. That would minimize the incidence of forgeting to put the card back into the machine, which has happened periodically.

I also believe I own the info and should be the primary decision maker as to who gets to see it and who does not.
My primary docter has commented that he thought I went to a sleep lab to obtain the reports I bring him. He seems to have learned a lot in the year I have been seeing him. I suspect he has not only studied the reports but researched what they mean.

If anyone finds a way to communicate with PR I would be happy to jump on the band wagon.

Todzo wrote:
Before I actually tried the compressible air space which also notably reduces noise and vibration I probably would have said the same thing that you did. We tend to mask the noise that we hear all the time. It becomes “part of the background”. However I do believe it also becomes part of the stimulation of our central nervous system as well.

Todzo, I think the noise is making it difficult for us to communicate. <g>

I'm not familiar with any machine other than the ResMed S-9 I've been using for almost two years, but it does NOT make ANY noise. The hose does not vibrate. (That must be awful!) There is no background noise in my bedroom. I live in a rural area and cannot hear any traffic noise, even with the windows open. There are no radios, or machines running. I have an all-electric house, so there is no heating system noise. My bedroom is QUIET, so I would hear the machine if it were making any noise. I'm usually asleep within a couple of minutes of hitting the pillow and sleep 7 hours without waking during the night, except maybe once every couple of weeks.

As to the machine's air pressure function, I feel no difference when it is operating or when I have the mask off and breath without it. But I know it is working because I can feel the vent (if I put my hand near it) and I have severe apnea without the machine (AHI 68.0) while enjoying an AHI usually below 2.0, and often below 1.0, while I'm using the machine.

It is too bad you are saddled with a noisy machine that makes breathing uncomfortable and must put up with a vibrating hose. You should try the S-9. Are you going to tell us which machine you have? Others might want to avoid that brand when they are choosing.

wardmiller wrote:

Todzo wrote:
Before I actually tried the compressible air space which also notably reduces noise and vibration I probably would have said the same thing that you did. We tend to mask the noise that we hear all the time. It becomes “part of the background”. However I do believe it also becomes part of the stimulation of our central nervous system as well.

Todzo, I think the noise is making it difficult for us to communicate. <g>

I'm not familiar with any machine other than the ResMed S-9 I've been using for almost two years, but it does NOT make ANY noise. ...

What! Are you telling me you cannot even hear the air spewing from the vent port!!!!

Perhaps hearing is more if an issue for you than you think!!

We need some measured data here and you (and all of you) can help.

First you need a two liter pop bottle cleaned and dried.

Then you need one of these (see: http://www.amazon.com/Radio-Shack-Digit ... B000A1EHGW ).

From a local farm supply store I already have several six inch lengths of this (see: http://www.amazon.com/LDR-515-B5006S-Br ... B008I6VB1U ).

In my case I have an old connector from a mask (swivel) which I use to come out of the CPAP tube to go into the 1 inch I.D. tubing mentioned above. The slight difference in size I make up with a bit of painters tape.

So cut the pop bottle in half at about the half way point. In the future we will probably figure out a good stuffing material but to move things along simply place the meter in the pop bottle and seal the cut with painters tape. The nylon tubing should screw onto the bottle. Seal with painters tape. Use painters tape to attach the outlet of the CPAP tubing to the nylon tubing.

And let the measurements begin!!!

Note: I may move this process along but my plan was to purchase the meter about the 3rd

Todzo wrote:
What! Are you telling me you cannot even hear the air spewing from the vent port!!!!

Unless the vented air impinges on my hand or the pillow, the exhaust is silent. Some masks are better in that regard than others, apparently.

As to my hearing, there is no problem there. At my recent Firefighter/EMT annual physical, I completed the comprehensive hearing test without a problem. At my last FAA Flight Physical, I had the same good results with the hearing machine.

Face it. Some CPAP machines are quiet, some masks also, and some tubes don't vibrate. I'm enjoying mine not because I made a wise choice, but because of the luck of the draw. When the DME delivered it, I knew nothing about CPAP machines, but have since learned the ResMed S-9 is as good as the market offers, but some DME's just provide a brick to the unknowing patient.

Todzo wrote:It would also be nice to have auto-downloading to a center where the data is made available on the web to the person and doctor(s) and flagged if problems are indicated.

Better yet, if they would add a web cam, for live streaming.