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Making Your Own CPAP Pressure Changes!? Want to hear your experiences


#1

There has been a lot of debate about patients making their own pressure changes on their CPAP device. Technically by law only physicians can prescribe the pressure settings, but so long as they grant permission to patients, patients are very much allowed to make changes in collaboration with their physician and care team. Who has done this, and how well has it worked? Have you done it with changing the minimum and maximum pressure settings in APAP mode, or only with changing fixed, single pressures in CPAP mode? Any and all experiences welcome here - let’s discuss!


#2

You have opened a huge issue in online support forums.

The ASAA when it had it’s old support forum had a strict policy of not allowing posts to enable users to access the clinical settings menu of their pap. I fully support that policy.

With modern pap often able to be accessed remotely by physicians via internal 3g modem or Bluetooth apps there is no reason for unsupervised pressure changes. Most other pap can do pressure settings via sd card uploads via email. There is no realistic reason for a patient to adjust their own pressures. It can be done so easily by physicians without an office visit.

The dangers caused by excessive pap pressure should not be risked by non physician adjustment of pressures.

Aerophagia (distended stomach) from air leaking past the epiglotis is a common side effect of pap when pressures are too high.

The real insidious issue is triggering central apnea from “blowing off” too much co2 with excessive pressure. In a. In lab pap titration the tech will often take pap pressure high until central apnea are detected to give the physician an upper limit for therapy pressures. With the increased use of auto titrating pap this upper limit is often not known.

I have not titrated my own pressures. I have not assisted others in doing so. I feel the laws around pressure settings being done by a licensed medical professional are in place for legitimate reasons.

I hope the ASAA continues it long standing policy of not allowing or supporting posts suggesting self titration is a good idea.


#3

Hi Truckerdad57, Really appreciate the reply and your individual perspective on this complex and fascinating issue. I guess the key phrase in the original post that should have been emphasized more clearly, esp in the title of the post, was " . . . in collaboration with their physician and care team." I recently had several wonderful discussions with a sleep physician who did not view the patient-provider relationship as hierarchical but as collaborative. Was every one of their patients open to this relationship and this level of involvement with their own care? No, of course not. But that subset of patients who want to know as much as possible about their therapy, who know that OSA is a complex, chronic condition that changes over time (and as frequently as night-to-night depending on a number of factors), and who want to maximize their daily functioning, well, they really do appreciate finding a provider who is willing to work with them in this way.

I don’t see a need to debate existing medical regulations or forum policies that inhibit open discussions that can benefit patients as part of this thread - we can do that in other threads if there is interest by folks. I prefer to limit this thread to discussion of those examples where folks worked closely with their sleep care teams in ways that maximized the efficacy of their therapy, including the allowance of pressure changes at home under the supervision of their care teams.


#4

With modern apap with remote physician access to settings in reality there is no practical reason for a patient to access clinical settings. A simple phone call or email and the physician makes the change.

Now… I’m not a “normal” patient. With my treating sleep specialist I just email any pressure changes.

For a different perspective visit the Apnea Board discussion forum. They take pride in providing instruction on accessing the clinical setting on any cpap. Their approach is something I disagree with.

Good discussion. Keep it up.


#5

Many excellent points. Wish everyone thought that way.


#6

I have had many problems with my machine, so I tried to make adjustments myself. NOT a good idea! Lesson learned.
My advice is DON’T. It only makes things worse. Let the experts so it.
Jim


#7

This is my first forum post.

I decided to join this community because I watched the AWAKE Sleep Apnea Initiative that was held last month and was pretty impressed with this organization and what I saw them present.

One thing that struck me about the real life people with OSA who spoke at that event is how there seems to be a disconnect between the perfect world of OSA treatment and the real world.

Several patients mentioned that no-one showed them how to use their machines, or they were simply not given any advice at all, just told to put on the mask and use it.

And what a miserable battle ensued for many, for months. This is the real world of CPAP and OSA so often unfortunately. Disinterested DMEs and harried, busy overworked sleep specialists. Desperate tired patients.

To me, this is a such a pity and the reason why so many “fail” at CPAP.

I believe firmly that patients HAVE to monitor their own treatment, and adjust accordingly, and that online forums are such a blessing in this regard.

In my case, I was discharged from my sleep specialist’s care (meeting lasted about 8 minutes) with a prescription for straight CPAP after a titration study where I got all of 15 minutes of REM and about 90 minutes of sleep.

As for remote monitoring, I was told that this was being done by the RT at the company that supplied the CPAP. However, I discovered that it stops after the machine is bought and the company no longer has a particular motivation to keep “monitoring”.

So I was “monitored” for all of about 4 weeks for a lifetime condition. HUH? And my machine was set up in such a way so that it didn’t show my nightly AHI. I had to change that myself. So potentially I might have had an AHI of 20 every night after the first month and been none the wiser … since neither the RT nor the sleep specialist was checking.

Thankfully for the internet! I did some research and set up something called Sleepy Head, an incredibly detailed program written by an OSA patient for folks just like me, and from night one I checked my progress on CPAP.

I went to several patient forums and saw thousands and thousands of people had changed their settings with no problem, in fact the very opposite.

So, based on what I saw on my nightly Sleepy Head charts and how I was feeling, I changed my setting to by about 2cm higher over the space of a few months.

The result is that 2 years later I am happily getting AHI numbers under 2 most nights and also using my CPAP for around 8 hours per night. Best of all I am sleeping well!

I have not once heard back from the RT and the sleep specialist.

The current failure rates for XPAP are far, far too high.

We need to be involved in our own treatment to change this.

Interesting discussion, glad to be a part of it here.


#8

Happy to have you here, @Timur. Welcome and thanks for sharing.


#9

Hi Timur.

You made some excellent points here.

We really don’t get followed very well by our sleep clinicians and I agree that this is one of the biggest reasons for failure at XPAP. However, for a motivated patient, what would be wrong with contacting their sleep clinician about the troublesome data reported on Sleepyhead…first? What would be wrong with troubleshooting the problem together? Wouldn’t suggesting a change to thus and so pressure setting be ok and helpful? Give them a chance to agree or disagree and to give their reasons. Demand it. Your record would then be reviewed and the online data compared with what you found on Sleepyhead. A confirmation could be made. A change might even be made - online - without ever going through the change-making yourself…or, of course, you could always tell them that you prefer and enjoy making changes yourself. They won’t care about that. The respiratory therapist has access, online to whatever settings changes you make anyway, but they won’t look at your record unless you give them a reason to.

Here’s the advantage that collaborating with your sleep health team offers. First, the reproach of never “hearing” from your RT or sleep specialist is taken away. Isn’t that nice? Secondly, the changes go into your medical record after the medical professional reviews your chart. That medical record follows you everywhere - even while you’re being passed around amongst healthcare providers. If you have a sudden and unexpected hospitalization, there’s a record of your machine settings so that emergency personnel can set the hospital-issued OSA gear to optimize your treatment and care, pronto. If you were recovering from a devastating automobile accident, wouldn’t you like to have the best treatment possible? If you were unconscious, wouldn’t you want your medical record to “speak” for you? Thirdly, by initiating the contact, we go on record as demonstrating genuine interest and motivation in our own care.

I agree. Let’s really get a conversation going with our health care providers. Let’s go on record by demonstrating that we have confidence and interest in our caregivers’ knowledge and skills (they did go to school for a very long time to obtain them). That means confidence enough to seek them out for their opinions and guidance. You think they don’t have the time or are uninterested? You may be right on both counts, but it would be a shame to miss out on an opportunity to prosper in our own OSA treatment via informed counsel and miss out on a really profitable doctor/patient relationships. You think that you are really the expert here and that your caregivers are a bunch of dumdums? Please reconsider. There are an awful lot of “experts” out there that have wound up dead wrong. We can and should demonstrate (on record) our interest in our own OSA care. Without this demonstration, we are the ones who stand to lose the most.

Our healthcare providers are here to serve us. Let’s help them step up to the plate. Let’s allow them to guide us in getting the best treatment available. In the multitude of counsel, there is safety. No more “bucking the system” and making unadvised pressure changes on our own!