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Changing Settings
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PaulaO2 Offline
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Post: #11
RE: Changing Settings
That's a good point, Zonk. If DMEs were more accessible, if they did more education, if they didn't treat the xPAP as some big dangerous bad thing that we are incapable of understanding, then perhaps users would understand more, feel more confident, feel more empowered about their own health, and, the best part, actually use their machine! Far too many of us feel as if the machine was thrust upon us with very little education so we just stop using them. They don't know they can trade in the mask and keep trying others until they find one that works. They don't know that the pressure can be adjusted. They don't know that viewing the data enables them to start out lower, getting used to the machine, then increase.

I take hypertension medication. I can use a spygwhatevermeter and keep track of my blood pressure. My doc regularly checks it as well, adjusting meds as necessary. We work on this together and she makes sure we both understand what is going on.

I take diabetes medication. I can use my glucose meter and keep track of my blood glucose levels. I adjust my food intake accordingly. My doc regularly checks my A1c and adjusts meds as necessary. We work on this together and she makes sure we both understand what is going on.

And yet I was given a CPAP and a mask, and told nothing. I was not educated on how the machine works. I was not given one that tracks data (back then, few did) nor has anyone ever asked for such data nor said data gathering was a good thing (or even existed). My sleep doc does not like APAP and refused to write a script for one (this was years ago, I bet he still wouldn't). When I first saw him, no one said "come back once a year". It was not until I had several invasive and expensive tests several years later before anyone connected it to my changing CPAP needs. Neither did I. I was in high risk of stroke and I had no clue sleep apnea was the reason, even though I was being "treated" for it.

I am better educated now. I feel more empowered and more likely to keep using CPAP. But it came 8 yrs almost too late.

PaulaO2
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-20-2012 01:48 PM
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zonk Offline

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Post: #12
RE: Changing Settings
(07-20-2012 01:48 PM)PaulaO2 Wrote:  And yet I was given a CPAP and a mask, and told nothing.
Me too. They gave me a full face mask, showed me the push start/stop button and sent me home.
Here are some excerpts from thread "Support and Education for cpap Patients can Improve Compliance"

* [The dismal compliance of sleep apnea patients with continuous positive airway pressure treatment could be significantly improved with simple measures such as education and support, according to several experts.

"We need to advise, educate, and empower these patients," said Dr. Philip Westbrook at the Eighth World Congress on Sleep Apnea. "They need to know how to treat their illness, they need the tools to monitor their treatment, and they need to be aware of the risks associated with their disease," he said.]

* ["What's the use of having a thousand-dollar machine sitting in the closet when all it takes is a nurse or a respiratory technician to say the reason it's not working is because of the wrong mask or because the pressure is too high?" said Dr. T. Douglas Bradley, of the University of Toronto.]

* ["It's a question of how much energy you put into it," Dr. Bradley said in an interview. "It's one thing to say, 'Here's the CPAP machine, see you later.' But it's another thing to say, 'I'm going to see you in a week from now, I am going to phone you to make sure you're using it properly, I'm going to download your compliance, and I'm going to make you feel guilty if you don't use it.' If you do that, you get very good compliance."

Arming patients with information about their condition and its treatment can empower them to take responsibility for it, Dr. Bradley said, and that's the best recipe for compliance with therapy.]
(This post was last modified: 07-21-2012 12:56 AM by zonk.)
07-20-2012 04:19 PM
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Sleepster Offline
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Post: #13
RE: Changing Settings
For those of us who stumble as we adjust to CPAP therapy, peer support like we get here in this forum is essential to success.

Sleepster
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www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-20-2012 09:53 PM
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mjbearit Offline

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Post: #14
RE: Changing Settings
Dead horse, the beating is done.

As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
07-20-2012 10:32 PM
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PaulaO2 Offline
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Post: #15
RE: Changing Settings
[Image: soapbox.gif]

[Image: beatdeadhorse.gif]

PaulaO2
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www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-20-2012 10:53 PM
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zonk Offline

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Post: #16
RE: Changing Settings
(07-20-2012 10:32 PM)mjbearit Wrote:  Dead horse, the beating is done.
Too-funny
(This post was last modified: 07-21-2012 12:51 AM by zonk.)
07-20-2012 11:53 PM
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vsheline Online

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Post: #17
RE: Changing Settings
(07-19-2012 01:11 PM)iTeachCpap Wrote:  Also, if you bump it up too high, it can cause what sleep techs call, centrals.

Hi iTeachCpap,

Thanks very much for taking the time to post your advice.

I am a new member of this forum (which I appreciate immensely - thanks, everyone!).

I have two requests or questions. The first is whether you are able to offer any observations on whether the EPR setting has any influence on the incidence of centrals. If the pressure being set too high may be associated with higher incidence of centrals, I think it would be logical to inquire whether EPR may have a beneficial influence in this regard.

My second question, or request, is that I am hoping you will share what guidelines or "best practices" are used (or in your view should be used) by sleep professionals in setting the "maximum pressure" of an APAP machine.

To give my own experience, my sleep study 3 yrs ago showed I had OSA and needed a pressure of 12 (as long as I stayed off my back). Later, because I was still waking up in the middle of the night gasping for breath with heart racing (even when sleeping on my side), the pressure on my CPAP machine (FP model 604) was increased to 14. A year later I finally upgraded to a ResMed S8 AutoSet II, and the tech at my doctor's office set it's pressure to minimum 6 and maximum 20, saying the machine will adjust itself to whatever pressure I need. Later, using ResScan 3.11 and a data card reader which were bought from my doctor, I found my AHI is better when using a minimum pressure of 14, as long as EPR is set to 3. The machine's maximum pressure remains set at 20. Only a few times (in the past 18 months that I have been looking at the data) has the pressure gone above 16, during occasional large mask leaks, and I have been grateful that the machine was able to adjust itself once or twice all the way to 20 and thereby help me avoid apneas.

I've been interested to see in their profiles (next to their posts) that some Apnea Board members use APAP machines with the maximum pressure set to less than 20.

Can you share what the current thinking in the professional field is in this regard? I am not asking for indisputable evidence supporting your views or supporting the conventional wisdom. I would simply appreciate knowing what your views (or the views of the profession) are. I promise to take all views with a grain of salt and be responsible for my own choices. (And I hope you will not be put off by the mild "push back" your comments have received.)

Again, thanks very much for your participation on Apnea Board.

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 07-22-2012 02:49 AM by vsheline.)
07-22-2012 02:06 AM
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zonk Offline

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Post: #18
RE: Changing Settings
(07-22-2012 02:06 AM)vsheline Wrote:  If the pressure being set too high may be associated with higher incidence of centrals
Welcome vsheline
For some people higher pressure may leads to aerophagia, less comfort, leaks, more arousal which result in sleep fragmentation.
The S9 Autoset differentiates between obstructive and central sleep apnea and responds appropriately.
So if it detect the airway is clear it wont increase the pressure.
http://www.s9morecomfort.com/s9morecomfo...toset.html
(This post was last modified: 07-22-2012 06:38 AM by zonk.)
07-22-2012 05:54 AM
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cbramsey Offline

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Post: #19
RE: Changing Settings
Welcome to the forum vsheline. We are glad you joined us!!! Welcome

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-22-2012 07:47 AM
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SuperSleeper Offline

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Post: #20
RE: Changing Settings
(07-22-2012 02:06 AM)vsheline Wrote:  Hi iTeachCpap,

Thanks very much for taking the time to post your advice.

I suspect iTeachCpap may choose not to answer you. He's most likely a hit-and-run poster who was only interested in a public demonstration of his "superior professional knowledge"... it seems that when egomaniacs get challenged and can't support their "superior" views with verifiable facts, they either 1) disappear completely or 2) reply with more "superior professional knowledge" baloney with no facts to back it up. I get emails all the time from these types of people - they want us to almost "worship" them simply because they've been "educated" and they (of course) know better than us lowly peons. And they never respond to try and "educate" us with real, solid advice like that for which you're asking, because (of course) we're too stupid to understand everything in their complicated and grown-up world. Rolleyes

There are two types of health care workers:

1. Those who are very knowledgeable and sincerely try to help others. We love for these types of good folk to participate on Apnea Board.

2. Those who are closed-minded egomaniacs who want others to worship their "superior knowledge". These types get no respect from me, and they will get no respect on Apnea Board.

Sorry for the cynical attitude, but I recently received yet another email this morning from a "health care professional" who scolded me for "allowing patients to have access to the clinician setup modes", (claiming that I'm ruining everyone's health by the very existence of our website).

I dunno... maybe my bad attitude is because I haven't had any coffee yet today. Too-funny

In any case, welcome to the forum, vsheline!

Okay, now to address iTeachCpap: Here's your cue to come back, act like a "victim" and post some type up some sort of "false shock" that you've been challenged in such a direct manner. (and all the while, still not giving any proof of your assertions) Rolleyes

Here is iTeachCpap's original post:
Quote:As a CPAP therapist, I would like to clarify a previous post on here. It is not illegal if you change your pressure. We won't stop taking care of you. If you change your pressure and it's too low or too high and something happens to you, the company that cares for you can be sued. Also, if you bump it up too high, it can cause what sleep techs call, centrals. If it is too low, it won't do you any good. If you still want to change it, talk to your doctor so that the change is documented somewhere. Be smart about it. This machine is strictly for your benefit.

Please note the key phrases used by this person to indicate superiority:

They start off telling us that we need to be corrected (like a parent correcting a child):
Quote:As a CPAP therapist, I would like to clarify a previous post on here

They state the obvious to make it sound like they are "reasonable":
Quote:It is not illegal if you change your pressure.

They use the royal "we" indicating that "they" are part an "elite group" that is similar to them saying that "they" (as an adult) will still take care of "you" (the child):
Quote:We won't stop taking care of you.

They make a completely stupid and erroneous statement, that "sounds" like it's an established fact, when in fact, it's not:
Quote:If you change your pressure and it's too low or too high and something happens to you, the company that cares for you can be sued.

The make further "professional-sounding" assertions, but offer no proof for them:
Quote:Also, if you bump it up too high, it can cause what sleep techs call, centrals
.

They then tell you that you are not "smart" unless you talk to someone who is (obviously) smarter than you (doctor). They assume, yet again, that you can never be "as smart" as a health care "professional":
Quote:If you still want to change it, talk to your doctor so that the change is documented somewhere. Be smart about it.

They (yet again) close by making another obvious statement in order to make them sound "reasonable":
Quote:This machine is strictly for your benefit.


Again, I'm not discounting that folks should consult with and strongly consider the advice that doctors and other health care professionals give us. We should all be open to the advice that trained people have to offer us. What I'm against is the ATTITUDE of a handful of "professionals" who talk down to us with an air of superiority and scold us for wanting to become as "educated" as the professionals are in these areas.

Again, just my personal opinion, of course. Coffee

SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

07-22-2012 09:38 AM
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