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

[archangle]

Lots of us tweak our own pressure.

Have any of you been caught changing your own pressure?

If you got caught, please post what kind of reaction you got.

Rage, indignation, stern warning, amazement, congratulations, interest, being told it's illegal, got arrested?

[archangle]

BTW, my answer.

I never adjusted my own machine until after my CPAP doctor pissed me off and I quit going to him. At that time, I had a dataless REMstar legacy plus machine, so he wasn't really doing much management anyway.

I did screw up the settings when I adjusted it and was miserable for a long time until I figured it out.

You DO need to be sure you know what you can hurt yourself if you do it wrong.

[chunkyfrog]

My PSP is not involved with my therapy, outside of perusing my log book.
My sleep doc was very interested, but told me to raise my max by a half centimeter.
I told him I did.

[Jay Aitchsee]

I told by doctor and she basically said, "Good". She was happy to have a patient who understood and took part in their own therapy.

[Sleeper Agent]

I am curious: would they be unhappy if they knew you have been reading the data?

I have been outright lying to them about that so far.

[ems]

When I told my doctor that I had changed my pressure which made me feel more comfortable - she said great! She also said that my data looked good and to, "keep up the good work".

I couldn't care less what my DME thinks about changing my pressure or anything else.

[Jay Aitchsee]

I have been outright lying to them about that so far.

Why?

[Sleeper Agent]

I have been outright lying to them about that so far.

Why?

I wasn't sure if they will be pissed.

P.S.
I didn't denied reading the data. I just haven't told them about it. I did tell my doctor I know my AHI and he didn't ask how.

[chunkyfrog]

. . . I couldn't care less what my DME thinks about changing my pressure or anything else.

+100
Only the doctor's opinion matters--and then only when (s)he is rational.

[sc0ttt]

Doctor told me to do it, and gave me advice. He apparently thinks it's stupid to think we're not going to find out anyway.

[M'ohms]

I told my sleep doctor that I made changes to my machine, and after reviewing my data, he said I had done a good job. My most recent visit to him (last week) was a follow-up for my new ASV machine and I told him that I felt like an increase in min. EPAP would be an improvement (and why). He agreed and recommended a pressure that I had already had in mind. He knows that I make my own changes and skips the red tape.

[jnk]

Both sleep doc and primary doc encouraged it for me.

A very small subset of patients might be able to hurt themselves by increasing pressure if they tried really hard to hurt themselves doing it, but other than that rare circumstance, the air ain't pressurized enough to hurt nobody no way no how. In my non-doc opinion.

The risk in raising one's own pressure is alienating one's doc and DME, if someone is worried about that sort of thing. I'm not.

Other than that, the kind of centrals that come from too high of a pressure aren't damaging to any relatively healthy human. Add that fact to the fact that no one has a reason to run too high of a pressure (since if there is no increase in comfort or feel or quality of efficacy-data numbers, the patient will naturally turn it back down), then I see no real risk for any plain-vanilla-OSA patient to raise his own pressure a cm or two. Heck, some docs regularly over-prescribe pressure by a cm or two as a rule of thumb, just in case the sleep study caught the patient on an exceptionally good night.

Any patient allowed to run an auto wide open can safely adjust the minimum up, in my opinion. The average patient is smarter than the machine, I believe, in choosing the parameters, especially if looking at data.

Just my take.

[archangle]

I am curious: would they be unhappy if they knew you have been reading the data?

I have been outright lying to them about that so far.

Good point. I started this poll just about changing pressure. Maybe a poll on reading your own data would be a good idea later.

I think they're partially protecting their turf, and partially have some legitimate concerns about patients tinkering with their therapy. Lots of patients do things like not take their meds, adjust their own dose, use the wrong over the counter products, take "natural" medicines, take drugs prescribed for others, or not take the full course of antibiotics. This can do harm and they are somewhat gunshy about patients adjusting things on their own.

I often mention the "medical mafia." Far too many doctors and others in the medical system do tend to protect "La Cosa Nostra" (literally "our thing") just like criminal organizations and cartels do. It's not necessarily an intent to be evil, but "the system" trains them to protect their turf. It's often an unconscious bias that has been hammered into the members of the system. Many of our modern organizations do that.

There's something in human nature that leads us towards clans or secret societies. Think of initiation rights and tribal society. Many organizations have some sort of "initiation" process, formal or not, that makes you think you're part of the clan and that you should treat clan members well, and defend against outsiders. It's an interesting social phenomenon.

You can mess up your data by doing things like putting the SD card into a Windows 8 machine or a Mac. Or forgetting to put the card back in, etc. The doctors and DME's often aren't that technically knowledgeable and tend to be afraid that if you do anything to the machine you'll break it.

[The Latinist]

My doctor noticed that my EPR was changed from 2 to 1. Asked if I had done that, I said "yes" and explained that that my average pressure decreased with no increase in AHI when I made the change. He seemed confused about how I knew that. I showed him my data. We talked about the data and agreed to up my pressure. We discussed a titration study and agreed to hold off on that pending the results of the change in pressure and a home oximetry study.

[palerider]

A very small subset of patients might be able to hurt themselves by increasing pressure if they tried really hard to hurt themselves doing it, but other than that rare circumstance, the air ain't pressurized enough to hurt nobody no way no how. In my non-doc opinion.

news reports of small woman inflated like a baloon floating over cambridge were received today, onlookers stated that she seem to have some kind of a box attached to a hose dangling from her face.

film at 11.