CPAP INTOLERANCE:

It’s not what you think!

By David E. McCarty, MD FAASM (but you can call me Dave)

16 June 2025

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“We shall find the answer when we examine the problem; the problem is never apart from the answer. The problem IS the answer. Understanding the problem dissolves the problem.”

--Bruce Lee, Bruce Lee Podcast #40—“Real Truth”

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The Washout Delta

Somewhere on the Isle of Sleep Apnea, there’s a beach where a lot of stories wash up.

You know the place.

We call it “The Washout Delta”.

The sun is low, the tide is soft, and a patient stands at the waterline holding a CPAP machine like it’s a cursed artifact from a forgotten civilization. His brow is furrowed. His voice is quiet. He says the words we’ve heard a hundred times, in different accents, with different backstories, always with the same exhale of defeat:

“I just couldn’t tolerate it.”

Sometimes they tried and hated it. Sometimes they never tried at all because they hated they idea of it. Sometimes they can’t even tell you why, but they’re convinced that it’s never going to work. And it all lands like a diagnosis, a label, a fated destiny: “CPAP Intolerance.”

Nowadays, there are other options on the market…expensive options that require chart documentation of this thing, this label, this “diagnosis”, this entity known as “CPAP Intolerance.” Documentation of this failure into the medical record enshrines it even more, like it’s some sort of static truth to be regarded with reverence and virtuous pity.

“CPAP Intolerance.”

With that as a foundational starting point, let me say this as clearly as I can:

Here on THE ISLE, we know CPAP intolerance isn’t a label.

It’s a signal.

It’s a red flare rising from the Bay of Narrative—a sign that the story isn’t over yet. It’s because “CPAP Intolerance” isn’t really a story of failure, as it turns out. Often, the story hasn’t even been attempted yet!

And the telling? That’s where healing begins!

So, why do people fail to become friends with their CPAP machine? Well, I’ll tell you, the answer is not found in some marketable magic answer, like a specific humidifier setting, a dynamic pressure relief system, or a certain style of mask. The answer is to help patients sort out where their therapy fell apart…for them, and help them understand their own rationale to engage.

An apocryphal quotation often attributed to Einstein: “If I had only one hour to save the world, I would spend fifty-five minutes defining the problem, and only five minutes finding the solution.” “CPAP Intolerance” is definitely a situation where sorting the nature of the problem makes all the difference.

On the ISLE OF SLEEP APNEA, there are three basic categories for this so-called “intolerance”…we refer to them as “NOT READY”, “NOT RIGHT” and “NOT COOL!”

Figuring out which category our patient belongs in is the first job.

Which *KIND* of intolerance are we dealing with?

NOT READY?...NOT RIGHT?...NOT COOL?

Once we determine the nature of the problem, the solution becomes evident. So, what do we do about it when we figure it all out?

Read on, Life-Fans!

Read on!

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“Not Ready”: The Suffering of Not Knowing

Some folks quit using CPAP therapy because they never really internalized what the damn thing was for, in the first place. For many of our patients, CPAP gets dropped into the clinical conversation without any discussion of motivation, like a drive-by assault. It just…appears, a forgone conclusion, a pre-channeled destination for a thousand-and-one quests.

Here’s your diagnosis! Here’s your machine! Now go save your life!!

Something about it feels…wrong.

What if the person never believed they were at risk? What if they weren’t even sleepy? What if no one ever explained how this therapy relates to their lived experience? What if their main symptoms were coming from something else that nobody thought to look for?

Answer: “noncompliance due to CPAP intolerance.”

The Empowered Sleep Apnea project turns this upside down, by providing structure for the co-discovery. It begins with a single idea: agency matters…that a patient who understands their rationale to pursue therapy will be more successful than the patient who doesn’t.

Enter the Five Reasons to Treat (FReTT):

RISK
SNORING
SLEEP
WAKE
COMORBIDITIES

These aren’t abstract concepts to be considered in isolation. The FReTT paradigm is a portal, an entry point, a scaffolding for an ongoing longitudinal conversation that relentlessly draws the attention back to the patient’s unique narrative, pertinent to the most important questions in clinical medicine, when it comes to a prescribed treatment:

Why are we doing this?
Is it working?

If those questions remain unanswered, then no matter how advanced the machine, the therapy is built on sand. But if the Five Reasons are co-discovered between patient and provider, they become the firm ground on which everything else stands [1,2].

The magic of this structure is how it translates to relationship-driven medicine. The FReTT paradigm goes beyond the mere decision of “whether” treatment is needed, it forms a scaffold by which the therapeutic journey can be evaluated, in real-time, as an emerging system….

…Why are we doing this?...

…Is it working?...

…a curated conversation that allows a patient access to a fluttery and elusive concept called navigational agency. The patient is the final judge of whether the answers to these questions are acceptable, whether the treatment is successful…

Why are we doing this?

Is it working?

Five Reasons potentially drive five different goals. The provider-patient team decide whether treatment should be continued, for what reasons, and whether the overall mission is accomplished.

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“Not Right”: Barking up the Wrong Tree

Suppose someone had all the reasons. All FIVE of them! Suppose they were motivated, thoughtful, even eager. Suppose their insurance company gives the “thumbs up” for coverage. Everything seems aligned.

And they still failed!

That doesn’t mean they were wrong.

It might mean the treatment was.

Let’s say it out loud: The thing we call “Sleep Apnea” out there in the “wild blue” is not one thing. Every case of Sleep Apnea can be considered a mixture of two different “flavors” of unstable breathing, and each flavor has “many moving parts”—and by “moving parts,” I mean tweakable factors that contribute to the overall picture.

Let’s take a look!

“Obstructive Sleep Apnea” (OSA) is term that hides a thousand variables (hence: “many moving parts”)—and a collapsible upper airway (the element that CPAP most successfully addresses) is just one of them. This problem is admixed with central sleep apnea (CSA) physiology to varying degrees, contributing to the overall metric of instability known as the apnea hypopnea index (AHI).

Here’s where we’ll point out that CSA physiology type instability also has many moving parts, one of which might be the CPAP machine itself!

On top of all of this, we know that some folks with Sleep Apnea experience no symptoms from it. Moreover, many folks with Sleep Apnea have another problem—maybe even many other problems—that are actually the root cause of their individual sleep-wake complaints!

So how do we sort the tangle?

Enter: The Five Finger Approach [3]

Circadian Misalignment
Pharmacologic Factors
Medical Factors
Psychiatric and Psychosocial Factors
Primary Sleep Diagnoses

Forgive the pun, the Five Finger Approach (FFA) is a hand we extend to our patients…not to grab…not to pull…but to invite for shared discovery.

To wander. To question. To explore.

The FFA is the second shared complexity deconstruction tool on the ISLE. This one’s a shared language to explore a transdiagnostic approach to nonspecific sleep-wake complaints.

See, sometimes the CPAP failure wasn’t because it was refused, but because it wasn’t the right tool for the flavor of Sleep Apnea that person had, or because it was only a small part of a much larger solution for that person’s set of problems. Think of it like this: if most of the sleep-wake complaints were coming from a non-apnea source, stabilizing the breathing is only going to be part of the overall solution.

It's like this: a good explorer knows that if the map doesn’t match the terrain, you don’t blame the terrain.

You revise the map. Or get a better one.

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“NOT COOL!!”: Systematic Over-Pressurization

Now comes the part where even the most well-meaning systems fall short.

Let’s say you had a patient with clear reasons…let’s say you diagnosed wisely, chose the right tool…let’s say they tried.

And it hurt.

Nasal congestion. Aerophagia. Arousals. Air coming out their eyes (!!). Smothering, “like a jet engine on my face”. A giant, obtrusive mask leaving crimson stripes.

For folks in this situation, it’s not about compliance, folks. This is about a phenomenon we here at the ISLE call pressure toxicity.

In our fragmented system, it’s not uncommon for CPAP to be introduced mechanically, robotically, as if there really is a business-friendly place where CPAP is brainlessly easy-to-deploy, a real “one-size-fits all” solution. In this fantastical place, the diagnosis of Sleep Apnea is awarded by algorithmic wearable technology, and CPAP machines with automated settings are drop-shipped at the push of a button. Money flows like wine, and patients become blissfully compliant and successful with therapy…

Sound too good to be true? That’s because it is! This was the wistful promise of wide-range autotitrating PAP therapy. The idea was that the machine would explore the whole range of pressures, and the sensible clinician would then “set” the device to the 90th percentile pressure. It all sounded so easy, that this culture was normalized nearly everywhere, including the peer-reviewed literature.

Unfortunately, in common practice, such wide-range auto-titrating strategies tend to cause systematic over-pressurization and early transitioning to oronasal interface, a higher psychological impact interface which promotes higher pressure requirements [4], and one which promotes the less healthful open-mouth breathing position.

The ISAACC trial used wide range APAP (5-15) with 90th percentile pressure as its deployment strategy for PAP, with pretty disastrous results. [5] Average compliance was poor—the average use per night was 2.78 hours with a standard deviation of 2.4 hours. That’s not just poor—that's a signal of systemic mismatch between intervention and reality. Perhaps not surprisingly, no cardiovascular benefit was demonstrated in the CPAP group, vs no-care. Though leak and mask choice data are not published, it’s not a reach to speculate that the poor compliance seen here speaks to systematic over-pressurization.

These developments don’t just worsen comfort, they may also change the risk-benefit ratio of the device in an unfavorable direction. Recent reports are emerging that indicate higher pressures may cause worsening systemic inflammation and may be a driving force behind trials that failed to show a cardiovascular benefit of CPAP in high-risk individuals.[6]

In short, though wide-range Auto-PAP settings carry the allure of delivering “smart” and “individualized” care, the “real life” application of this strategy does anything but! Here on THE ISLE, we joke around that sending someone home with wide-range Auto-PAP (and no plans to reign it in) is a bit like sending someone home with a full-grown Rottweiler, no ground rules, and no leash--not because APAP is inherently harmful, but because the strategy of ‘set it and forget it’ can backfire without patient-centered calibration.

Sometimes, in a situation like this, the dog eats the couch.

“…don’t blame *ME…*I was poorly trained!…”

We call this group the “NOT COOL!” scenario in the “CPAP Intolerance” story, not because the patient was petulant, but because the treatment itself became the source of suffering. If you imagine all of us shouting “NOT COOL!” at a boorish, fragmented system that just doesn’t know any better (bless its heart!) as we try to put the pieces back together, you’ll get the idea.

Here’s the super-important part, so stay with me:

When we figure out that our patient’s story suggests the “NOT COOL!”scenario, all of us here on THE ISLE step up to the task!!

What do we do?? Do we try again with the same strategy? Do we jump on the bandwagon and talk about how nasty that ol’ CPAP is? Do we join an online blog group, so we can properly lambast Big Pharma and the corruption of Western Medicine?

NO, Life-Fans! Quite the contrary! On the ISLE, we know better, now! We dig deeper.

We listen.

We down-explore the absolute pressure and work on getting our patients breathing through their noses.
We remember that our goal is not to “get them compliant on CPAP” but to re-establish effortless nasodiaphragmatic breathing, a foundational element of health.
We know that if their only experience was an oronasal mask, we help them engage nasal breathing rehabilitation, and teach them to try again, with gentler settings through a nasal interface.
We proactively mitigate oral air venting using mouth tape, a chinstrap, or an oral obturator like SomnoSeal.
In short, we try to make the device as physically and psychologically gentle as possible before we allow the narrative of “CPAP Intolerance” to calcify into an immutable reality.

There’s an old saying in these parts, a mantra sung onto the breeze by the wizened ISLE crow population who roost over by Five Finger Approach Mountain…you can hear their croaking mantra on the breeze if you listen closely:

“You haven’t failed CPAP, until you’ve failed low-pressure nasal CPAP…

You haven’t failed CPAP, until you’ve failed low-pressure nasal CPAP…

…control the oral air venting…

…caw! caw! caw!”

Here’s the point, Life-Fans…in settings like this, the CPAP wasn’t to blame, the deployment strategy was! We can’t let a fragmented system determine individual trajectories as random individual events.

When the failure is NOT COOL!...

Don’t put the Rottweiler to sleep…

…get him a shorter leash!

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THE “SCHOOLHOUSE ROCK” OF SLEEP MEDICINE

The Empowered Sleep Apnea project isn’t here to replace clinical expertise.

It’s here to translate it.

With cartoons. With maps. With a super-RAD PODCAST [2]. With metaphors. With fables and poems and decoder wheels and the kind of storytelling that reaches past the frontal cortex and into the mystery of what makes us human.

Because complexity isn’t a problem to be solved. It’s a landscape to be explored.

And when someone fails CPAP? We don’t send them back into the wilderness alone to hack away at the next most expensive option.

We meet them on the beach, by the Bay of Narrative, and ask what they saw.

And we listen!

Here on THE ISLE, CPAP Intolerance is not the end of the story.

It’s the beginning of the one that’s worth telling.

Kind mojo,

Dave

David E McCarty MD, FAASM

Longmont, Colorado

References

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