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Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Thu Jul 17, 2014 8:32 pm
by ChicagoGranny
markdh wrote:Not being allowed to change my pressure based on the data makes as much sense as not knowing if my diet is working unless I get weighed on the doctor's scale.
I don't like that analogy Mark.

The most popular analogy relates looking at machine data and changing CPAP pressure to a diabetic measuring his blood sugar and adjusting his medication. Diabetics do it all the time and it is routinely more dangerous for them than adjusting CPAP pressure is for us.

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Thu Jul 17, 2014 8:43 pm
by markdh
Yes, it was poorly worded.

My attempted point was if I follow the "rules", only the DME knows whether my therapy is working or not, and they only check before a doctor appointment. How well would that work for weight loss (or diabetes control) if the only time you could check was every nine months or so at the doctor's office?

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Thu Jul 17, 2014 9:52 pm
by archangle
markdh wrote:Not being allowed to change my pressure based on the data makes as much sense as not knowing if my diet is working unless I get weighed on the doctor's scale.
Let's not forget that CPAP isn't that easy, that a lot of people don't understand the concepts, and that there are a lot of people out there who would tinker with the settings and screw it up. I suspect a lot of the Joe Sixpack crowd would turn the pressure down to something comfortable, not look at or not understand the data, and end up not treating their apnea.

I am in favor of being able to change pressures and read data, but I realize that not everyone will figure out how to do it on their own. I just wish that the system didn't do such an abysmal job of managing their patient's apnea treatment.

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Fri Jul 18, 2014 6:44 am
by Uncle Sigh
archangle wrote: Let's not forget that CPAP isn't that easy, that a lot of people don't understand the concepts, and that there are a lot of people out there who would tinker with the settings and screw it up. I suspect a lot of the Joe Sixpack crowd would turn the pressure down to something comfortable, not look at or not understand the data, and end up not treating their apnea.

I am in favor of being able to change pressures and read data, but I realize that not everyone will figure out how to do it on their own. I just wish that the system didn't do such an abysmal job of managing their patient's apnea treatment.
I disagree with this sentiment. There is a lot more than pressure settings to having a good CPAP therapy. Many factors like - using it all night and for naps, avoiding excessive leaks, avoiding mouthbreathing, finding the correct humidity setting, avoiding mask irritation. This is too much and too intimate for a "system" to manage.
I just wish that the system didn't do such an abysmal job of managing their patient's apnea treatment.
No, you need to manage it yourself to be successful.

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Fri Jul 18, 2014 10:43 am
by archangle
Uncle Sigh wrote:I disagree with this sentiment. There is a lot more than pressure settings to having a good CPAP therapy. Many factors like - using it all night and for naps, avoiding excessive leaks, avoiding mouthbreathing, finding the correct humidity setting, avoiding mask irritation. This is too much and too intimate for a "system" to manage.
Yes, but in many cases, the system does such an abysmal job at the things it does do.

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Fri Jul 18, 2014 11:29 am
by deerslayer
Sure, i told the sleep doc. Of course he didn't like it . Then i let him know i had places to go & for him not to waste my time by having me sit in a little room waiting for his sorry arse getting around to see me..... on way out secretary says when next year for an appt......I said Never ...is Never a good time for you

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Fri Jul 18, 2014 11:47 am
by 49er
deerslayer wrote:Sure, i told the sleep doc. Of course he didn't like it . Then i let him know i had places to go & for him not to waste my time by having me sit in a little room waiting for his sorry arse getting around to see me..... on way out secretary says when next year for an appt......I said Never ...is Never a good time for you
deerslayer, a big time high five for what you did.

49er

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Fri Jul 18, 2014 12:26 pm
by ChicagoGranny
Just make sure you have a doctor, any doctor, who will verify your compliance once per year and write a prescription when you need a new CPAP. Medicare, Medicaid and many insurance companies require once per year compliance.

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Fri Jul 18, 2014 6:53 pm
by markdh
archangle wrote:
markdh wrote:Not being allowed to change my pressure based on the data makes as much sense as not knowing if my diet is working unless I get weighed on the doctor's scale.
Let's not forget that CPAP isn't that easy, that a lot of people don't understand the concepts, and that there are a lot of people out there who would tinker with the settings and screw it up. I suspect a lot of the Joe Sixpack crowd would turn the pressure down to something comfortable, not look at or not understand the data, and end up not treating their apnea.

I am in favor of being able to change pressures and read data, but I realize that not everyone will figure out how to do it on their own. I just wish that the system didn't do such an abysmal job of managing their patient's apnea treatment.
Isn't that why sites like this exist? I had no idea how to change anything on my machine before I found this site. I had two sleep studies before I was diagnosed, and in the second one I slept so poorly that the data the doc got had him making an educated guess as to what my pressure should be.

Since then, I've been able to tinker with the auto ranges and have found one that works well for me. It's higher than the one the doc prescribed.

I'd hate to think the only way to get my pressure changed would be waiting months for another sleep study at around $1000. In my case the pressure isn't the problem anyway, it's dealing with the mask and hose. Even after nearly a year I still have nights where I just can't get comfortable because the hose gets in the way or the mask doesn't fit right.

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Fri Jul 18, 2014 7:57 pm
by ChicagoGranny
I just can't get comfortable because the hose gets in the way
Hose management is critical. Analyze what you are doing and develop a technique to deal with it. This may take a bit of trial and error.

I have a basic, simple technique with no add-ons, but others are more creative and can provide ideas.

https://www.google.com/search?q=hose+ma ... channel=sb

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Sat Jul 19, 2014 4:07 am
by DavidCarolina
I started doing it when cleveland clinic ticked me off with foreigners who didnt get the nuances of english
and only looking at AHI.

DUMPED.

Re: Poll: Have Any of You Been Caught Changing Your Pressure?

Posted: Sat Jul 19, 2014 6:33 pm
by mgaggie
49er wrote: Another sleep doctor acted like I had cracked a top secret code that I shouldn't have access to.

49er
That was the reaction I got from the sleep clinic I have to attend. They wanted to know how did I work out how to change the pressure and who said I could do it, I replied "YouTube showed me how to and no one told me to change it I made the decision myself". It was almost like I had committed a mortal sin. I also said to them I can't always wait the 2 months from making the appointment, or the time and fuel costs (4-5 hour round trip $90 petrol). I told my specialist about their reaction, he smiled knowingly.