Can patients safely alter the settings to come up with good results

jnk... wrote: ↑

Tue Jan 14, 2020 8:45 am

JJR wrote: ↑

Tue Jan 14, 2020 8:32 am

jnk... wrote: ↑

Tue Jan 14, 2020 8:06 am

A blog post at CPAP.com has an interesting position on this:

A blog post by David Repasky at CPAP.com wrote:It is not advisable for individuals to adjust CPAP pressure themselves.--https://www.cpap.com/blog/cpap-pressure-high-tell-fix/

He does not state why it is not advisable.

It is for the same reason that walking around inside your home is "not advisable." After all, you might stub your toe or something.

And if I give you permission to walk around inside your own home and then you stub your toe, you might sue me for having recommended it.

Yes, walking is most certainly not advisable.

And never remove the little tags on your pillows, the pillow police might come get you.

JJR wrote: ↑

Tue Jan 14, 2020 8:32 am

jnk... wrote: ↑

Tue Jan 14, 2020 8:06 am

A blog post at CPAP.com has an interesting position on this:

A blog post by David Repasky at CPAP.com wrote:It is not advisable for individuals to adjust CPAP pressure themselves.--https://www.cpap.com/blog/cpap-pressure-high-tell-fix/

He does not state why it is not advisable.

No, he doesn't does he?
Doesn't surprise me though...as a representative of cpap.com they are going to take the CYA position.
But cpap.com owners did set up this forum didn't they.....think they might have envisioned people needing or wanting to change something?

Again to everyone:

FWIW....I don't advise changing anything without a good reason. Never have I advised that. To get a good reason one has to be educated and know what they are doing and why they are doing something.....which is what I always try to do with any of the ideas I offer and why often write novels with my responses or ideas. I try to explain why something isn't working well and what needs to be done to improve things. There is absolutely nothing stopping a patient from getting educated and learning enough to manage his own care unless they simply lack the intellectual ability to understand...and those people really have no business messing with anything.

Now the medical profession has long had the position that they were the only people "smart" enough to know what to do and that's simply not the case.
My question still remains...is it harmful for a properly educated patient to make some minor changes in pressure settings?
What I got blasted for was advising changing the minimum pressure in someone that was using the 4 to 20 factory default settings and it was painfully obvious that the machine wasn't doing a good job because the AHI was in the double digits and it was primarily obstructive.

Yes, in a very small subset of people with significant health issues they could potentially do something that might make a problem worse but if more pressure was a problem.....why would that person even be on an auto adjusting machine in the first place where the machine could potentially go higher and stay higher all night anyway?

The only reason so far that I can tell is that the person who blasted me for advising what I advised...was they still adhered to the old way of thinking that patients just shouldn't change anything because their doctor always knows best....and that isn't a reason in my book. That's the God Complex bug at work and it just doesn't hold water with me. Doctor's don't always know best...plain and simple.
They get stuck in the dark ages and won't come out and learn anything new.

Dial twiddling is the real issue.
Changing settings randomly--without input and ANALYSIS is likely to fail.
--Like going up to bat, while wearing a blindfold.
Following the scientific method is critical.
Read, measure, analyze; then only make small changes ONE AT A TIME.
Record each change and the results before doing more.

Raising minimum on an APAP is the equivalent of turning off ramp, since it merely adjusts starting pressure.

Ten centimeters used to be the arbitrary pressure everyone was given until titration, which indicates the safety of that pressure for everyone.

The trick is to couch information in such a way that it can't be construed as direct advice to an individual. A reference to something like "your medical team" thrown in somewhere now and then can keep the RRTs from blowing a gasket and chewing out the good people like you who perform valuable services passing on life-saving information that is often needlessly kept hidden from the needy.

I consider you careful. Always have. You do good work. Don't let the bastions get you down.

zonker wrote: ↑

Mon Jan 13, 2020 5:18 pm

Pugsy wrote: ↑

Mon Jan 13, 2020 11:29 am

Some heated discussion going on about patients altering settings. This is a better place to continue the discussion instead of hijacking newbie helping threads with the arguments.

odd. one member of the "heated discussions" hasn't shown up here to carry on the conversation.

I too find it very odd that the individual who insisted on disrupting others therapy threads with nonsense about changing settings being dangerous. But he won't discuss his concerns in a topic devoted to it, or support his position.

jnk... wrote: ↑

Tue Jan 14, 2020 9:58 am

Don't let the bastions get you down.

Not to worry there.

I just want to know if maybe there was something out there that I didn't know that might cause harm to someone with a well thought out idea for an upwards pressure adjustment.

At least beyond someone who doesn't understand how apap machines actually work telling me it "could harm someone" without some sort of documentation as to how or what it might do beyond the usual rhetoric which has been around since the dark ages of cpap use and patients were led to believe that they were too stupid to understand any of this stuff.
At this point all I am hearing is the echo from the past from someone who doesn't understand how apaps work....so that doesn't bother me but I can't possibly read everything or know everything and thus I was wondering if I was missing something.

The person who started all this...hasn't provided the proof I asked for. I assume it is non existent. Just because a doctor or DME or nurse or RT says something...doesn't constitute proof in my book. Just because it has always been how things are done...isn't proof in my book.

Heck, I had a RT tell me to my face it was against a FEDERAL law for patients to have the software needed to see the data from their machine in their possession. Dumb ass....at the time I was told that bold face lie the software was easily found all over the world sold for 100 bucks by the machine manufacturers directly. I asked him to show me the law or tell me where to find it....he got real busy and real quiet and totally ignored me from then on. Big surprise.

Folks remember....we have a forum member on cpap who is a doctor specializing in sleep medicine and he used to be real active here....and he knew full well what we offered here and never once said it was a bad idea.

We have doctors here...specializing in other fields...who come here for tweaking advice...and they take our advice...not one peep from them about any harm.

jnk... wrote: ↑

Tue Jan 14, 2020 9:58 am

Raising minimum on an APAP is the equivalent of turning off ramp, since it merely adjusts starting pressure

Well, this isn't actually correct, the minimum pressure is what the machine mindlessly tries to attain all night long. It operates on the assumption that the minimum was set by someone with a brain, not some almost a quack, so it always wants to be at the minimum.

Breathing events cause an exception, which temporarily raises pressure, but as soon as those clear up.... Back to minimum we go. If the minimum is too low... More events, more fractured sleep, more oxygen desats, more problems.

Minimum pressure is what it's all about.

Unlike many of the members of this forum, I did not come here because my pressure settings were not sufficient. I was looking for a mask that was suitable for higher pressures. SURPRISE!!! Any mask that fits you properly is suitable for higher pressures. After discovering this, I decided to stick around and see what I could learn, and perhaps offer a little advice occasionally.

Admittedly, I have played around with my pressure settings, but always doing so with my eyes wide open and looking at the results closely and basing changes on trends rather than individual results. After trying several different pressure ranges, single pressure, etc., I am now at almost the same place I started. My prescribed settings with IPAP of 20 to 25 with pressure support of 5. My current settings are IPAP of 19 to 25 and pressure support of 4. This minor change has eliminated almost all of the central apnea events I was having when I first started. So, yes, sometimes the doctor gets it right on the first try. Unfortunately, this seems to be the exception, not the rule, which is why most of us are here.

palerider wrote: ↑

Tue Jan 14, 2020 10:20 am

jnk... wrote: ↑

Tue Jan 14, 2020 9:58 am

Raising minimum on an APAP is the equivalent of turning off ramp, since it merely adjusts starting pressure

Well, this isn't actually correct, the minimum pressure is what the machine mindlessly tries to attain all night long. It operates on the assumption that the minimum was set by someone with a brain, not some almost a quack, so it always wants to be at the minimum.

Breathing events cause an exception, which temporarily raises pressure, but as soon as those clear up.... Back to minimum we go. If the minimum is too low... More events, more fractured sleep, more oxygen desats, more problems.

Minimum pressure is what it's all about.

Thanks, PR. Sloppy wording on my part. I just wanted to make the point that if ramp can rightly and safely be put under patient control, so can min pressure.

palerider wrote: ↑

Tue Jan 14, 2020 10:20 am

jnk... wrote: ↑

Tue Jan 14, 2020 9:58 am

Raising minimum on an APAP is the equivalent of turning off ramp, since it merely adjusts starting pressure

Well, this isn't actually correct, the minimum pressure is what the machine mindlessly tries to attain all night long. It operates on the assumption that the minimum was set by someone with a brain, not some almost a quack, so it always wants to be at the minimum.

Breathing events cause an exception, which temporarily raises pressure, but as soon as those clear up.... Back to minimum we go. If the minimum is too low... More events, more fractured sleep, more oxygen desats, more problems.

Minimum pressure is what it's all about.

huh. i think you bring up a very important point. and i don't think that i've read this on the forum before. at least, not stated this way. then again, i don't read every post here.

i'll try to remember it the next time i attempt to help a newbie.

Olivia wrote: ↑

Tue Jan 14, 2020 1:03 am

I changed my pressures and just had my annual doctor visit. He printed out a summary for me and never noticed I changed my pressures. I decided not to discuss it with him.

sometimes and with some people, i think that's best!

Dog Slobber wrote: ↑

Tue Jan 14, 2020 10:11 am

zonker wrote: ↑

Mon Jan 13, 2020 5:18 pm

Pugsy wrote: ↑

Mon Jan 13, 2020 11:29 am

Some heated discussion going on about patients altering settings. This is a better place to continue the discussion instead of hijacking newbie helping threads with the arguments.

odd. one member of the "heated discussions" hasn't shown up here to carry on the conversation.

I too find it very odd that the individual who insisted on disrupting others therapy threads with nonsense about changing settings being dangerous. But he won't discuss his concerns in a topic devoted to it, or support his position.

maybe he figured it was just going to be seasoned veterans in here and he knew his bs wouldn't fly?

which isn't the point of pugsy offering up this thread. she's sincere about wanting to know if there is any proof of damage done by a non-doctor changing pressure.

hell, i'd like to know that too.i'm already hesitant to give out advice to newbies. and what i DO advise in almost every case where i advise, is for the user to up his minimum pressure.

so i don't know what that person is thinking.

jnk... wrote: ↑

Tue Jan 14, 2020 11:43 am

palerider wrote: ↑

Tue Jan 14, 2020 10:20 am

jnk... wrote: ↑

Tue Jan 14, 2020 9:58 am

Raising minimum on an APAP is the equivalent of turning off ramp, since it merely adjusts starting pressure

Well, this isn't actually correct, the minimum pressure is what the machine mindlessly tries to attain all night long. It operates on the assumption that the minimum was set by someone with a brain, not some almost a quack, so it always wants to be at the minimum.

Breathing events cause an exception, which temporarily raises pressure, but as soon as those clear up.... Back to minimum we go. If the minimum is too low... More events, more fractured sleep, more oxygen desats, more problems.

Minimum pressure is what it's all about.

Thanks, PR. Sloppy wording on my part. I just wanted to make the point that if ramp can rightly and safely be put under patient control, so can min pressure.

Ah, yes, agreed.

zonker wrote: ↑

Tue Jan 14, 2020 11:59 am

palerider wrote: ↑

Tue Jan 14, 2020 10:20 am

jnk... wrote: ↑

Tue Jan 14, 2020 9:58 am

Raising minimum on an APAP is the equivalent of turning off ramp, since it merely adjusts starting pressure

Well, this isn't actually correct, the minimum pressure is what the machine mindlessly tries to attain all night long. It operates on the assumption that the minimum was set by someone with a brain, not some almost a quack, so it always wants to be at the minimum.

Breathing events cause an exception, which temporarily raises pressure, but as soon as those clear up.... Back to minimum we go. If the minimum is too low... More events, more fractured sleep, more oxygen desats, more problems.

Minimum pressure is what it's all about.

huh. i think you bring up a very important point. and i don't think that i've read this on the forum before. at least, not stated this way. then again, i don't read every post here.

i'll try to remember it the next time i attempt to help a newbie.




themoreyouknow.gif

Well, you know I'm not much for long explanations, I'll try to remember to make this one a faq.