what do the users think?

Today I got to talk with one of the manufacturers of CPAP machines and it was their opinion that most users give up on CPAP because the masks don't fit and I thought it was because the machines never get adjusted right for them. I am talking about users that really want this to work
I think that the mask is easier to do for most, no buttons or menus, you can hear when it's wrong, the machine reports leaks. You may not get it to fit correctly, but if they are going to try something, I think it will be mask fit.
so what do you think:
1. They try the system, make no adjustments to anything and stop
2. The try different masks or liners or strap adjustment and give up without changing any machine settings
3. They try machine settings and can't get that to work and give up
4. they adjust both the machine and mask and still can't get it to work and give up

pick you way of answering: pick the one you think happens most, order the above by importance, assign % numbers to each choice

Personally I started adjusting the machine and am just getting around to do mask things in a major way.

I'd say "Weak Minds", the ability to commit is lacking, their Can't gene is turned on in their lives. Can't never gets anything worthwhile done. Jim

First and foremost it's the mask. Often they are fit with the new user sitting up in a chair, not lying down in his or her normal sleeping position. With alarming frequency the machine isn't even hooked up to the mask when the mask is "fitted". The DME or sleep tech who is fitting the mask often has favorites and biases (e.g. "nasal pillow masks can't be used at high pressures") and they don't take the time to really fit the user well and understand the user's concerns (claustrophobia, mouth breathing, etc.).

So the user goes home with a mask that doesn't really work--I would say this is the greater majority of new user experiences. If the mask isn't comfortable, if it leaks, or it doesn't work because of mouth breathing, the new user is not going to have success. New users who are dealing with leaks or the weight of the hose pulling down on the mask will often tighten the mask to compensate--that simply makes matters worse. The mask, IMNSHO, is the main reason new users fail. It may not have buttons or seem complicated, but I think masks are the most complicated components.

As for the machines, new users are often told NOT to touch any of the settings. Sometimes that backfires as new users are afraid to turn off the ramp setting or change the humidity settings, and those can have a profound effect on comfort and success with the machine. I think that's the second most common cause of CPAP failure.

Finally, the other factor is lack of support. DME's and sleep labs are not usually much help with difficulties. People are left on their own and their doctors may not be able to help with the night to night struggles. Often care providers tell users to "just keep using the machine" which isn't very helpful advice when something is not going well. And people in the industry for the most part discourage patient involvement in the treatment. Only a small percentage of users find their way here, download sleepyhead and learn to optimize their treatment. I think it would be a fascinating study to more formally evaluate CPAP failure and what contributes to CPAP success.

The answers from this group are probably not representative of the general OSA population. My experiences before finding this site and after finding this site were miles apart. Having tried just one approach isn't always a lacking on the user's part. It could be an informed decision.

PoolQ wrote:Today I got to talk with one of the manufacturers of CPAP machines and it was their opinion that most users give up on CPAP because the masks don't fit and I thought it was because the machines never get adjusted right for them. I am talking about users that really want this to work
I think that the mask is easier to do for most, no buttons or menus, you can hear when it's wrong, the machine reports leaks. You may not get it to fit correctly, but if they are going to try something, I think it will be mask fit.
so what do you think:
1. They try the system, make no adjustments to anything and stop
2. The try different masks or liners or strap adjustment and give up without changing any machine settings
3. They try machine settings and can't get that to work and give up
4. they adjust both the machine and mask and still can't get it to work and give up

pick you way of answering: pick the one you think happens most, order the above by importance, assign % numbers to each choice

Personally I started adjusting the machine and am just getting around to do mask things in a major way.

It's hard to keep this short, but I'll try.........
The manufacturers, doctors and DMEs (the "medical mafia") have set them up to fail.
DMEs are supposed to remove the "clinical setup" instructions from the packages.
They tell the users:
not to adjust the therapy settings in their machines (including telling them that it's "illegal" to do so),
there is no data they can see or interpret for themselves......and if they were to see the data, they'd be too stupid to know how to interpret it,
they have traditionally handed out non-data-capable machines to the users,
if the user has problems......just keep trying.......and trying (same things over and over and expect different results),
and on and on and on.......

Basically, they're trying to keep them from being educated in their own therapy.
It's inconceivable that a doctor would prescribe medications to a person with diabetes and tell them not to monitor their blood sugars........or be given a meter that didn't show what the blood sugar levels were........or that only the doctor can download and see and interpret the data from the meter. Or, not to modify their insulin injection amounts according to what their meters showed.
They treat "air" like it was a dangerous drug.

Those medical scenarios are treated with a night and day difference.

It's been no surprise why people give up on this therapy and why the "success" rate is so pitifully poor.

On the other hand........far too many XPAP users act like they don't want to know anything about their therapy......"this is a pain in the ass......just show me where the On/Off button is and that's all I want to know". They know everything there is to know about their smart phones, cameras, computing devices, and other electronic stuff, but couldn't give a rat's behind about what they're supposed to sleep with every night that will improve their health.


Den

.

#1...Attitude
#2...Mask
#3...Proper Pressure
#4...Type of Machine

Ignorance of how serious sleep apnea is.

LSAT wrote:#1...Attitude
#2...Mask
#3...Proper Pressure
#4...Type of Machine

I think LSAT has it properly boiled down in the right order.

There are those that have a "Will Make it Work no mater what" attitude, and then there are those that don't, or aren't there yet. Fortunately most people that come here are trying to make it work

My own numerical list goes something like this......

#1 - Education

#2 - See #1

#3 - See #1

#4 - See #1

(With enough of #1, the rest will fall into place.)


Den

.

Wulfman... wrote:

PoolQ wrote:Today I got to talk with one of the manufacturers of CPAP machines and it was their opinion that most users give up on CPAP because the masks don't fit and I thought it was because the machines never get adjusted right for them. I am talking about users that really want this to work
I think that the mask is easier to do for most, no buttons or menus, you can hear when it's wrong, the machine reports leaks. You may not get it to fit correctly, but if they are going to try something, I think it will be mask fit.
so what do you think:
1. They try the system, make no adjustments to anything and stop
2. The try different masks or liners or strap adjustment and give up without changing any machine settings
3. They try machine settings and can't get that to work and give up
4. they adjust both the machine and mask and still can't get it to work and give up

pick you way of answering: pick the one you think happens most, order the above by importance, assign % numbers to each choice

Personally I started adjusting the machine and am just getting around to do mask things in a major way.

It's hard to keep this short, but I'll try.........
The manufacturers, doctors and DMEs (the "medical mafia") have set them up to fail.
DMEs are supposed to remove the "clinical setup" instructions from the packages.
They tell the users:
not to adjust the therapy settings in their machines (including telling them that it's "illegal" to do so),
there is no data they can see or interpret for themselves......and if they were to see the data, they'd be too stupid to know how to interpret it,
they have traditionally handed out non-data-capable machines to the users,
if the user has problems......just keep trying.......and trying (same things over and over and expect different results),
and on and on and on.......

Basically, they're trying to keep them from being educated in their own therapy.
It's inconceivable that a doctor would prescribe medications to a person with diabetes and tell them not to monitor their blood sugars........or be given a meter that didn't show what the blood sugar levels were........or that only the doctor can download and see and interpret the data from the meter. Or, not to modify their insulin injection amounts according to what their meters showed.
They treat "air" like it was a dangerous drug.

Those medical scenarios are treated with a night and day difference.

It's been no surprise why people give up on this therapy and why the "success" rate is so pitifully poor.

On the other hand........far too many XPAP users act like they don't want to know anything about their therapy......"this is a pain in the ass......just show me where the On/Off button is and that's all I want to know". They know everything there is to know about their smart phones, cameras, computing devices, and other electronic stuff, but couldn't give a rat's behind about what they're supposed to sleep with every night that will improve their health.


Den

.

Yep, what Den says! About dr's and diabetes it takes a major fight sometimes to get a doctor to prescribe the amount of test stips one needs to keep their bg's under as tight of control as I do. Years ago I had to have my then insurance company tell my doctor they would rather pay for as many test stips a day as I wanted than pay for potential wound care, renal failure etc. I don't share my numbers with my doctor anymore. I let him run an A1c 4 times a year and drool Point is we need to make our own lives better and stop relying on doctors to do it for us! I just started using SH and have had SA for 17 years. Thankfully, I am very well controlled without any tweaking!

Den, I love your analysis! Right on, though in defense of my DME, the clinical menu was in with my user's manual, and when I needed to adjust my humidifier level, he showed me how to do that so I wouldn't have to haul the machine along for help.
Actually, I think everyone has a good response here.

I agree with Jan.... it's the mask. I have always said the mask is the key to successful therapy. Your body rejects trying to sleep with that dang thang strapped to your head. A good attitude is half the battle.

Just sayin'

Sheriff