New Four-Part Series on CPAP Failure
Please share with anyone struggling on CPAP or anxious about attempting CPAP. There are better PAP alternatives, and this essay explains why CPAP fails so frequently and how advanced PAP is superior.
The essay is in 4 installments and includes an audio version (inserted as a black screen video) of the same content. The reference list appears in the final installment but links in the text should take you directly to specific publications.
The Crisis of CPAP Failure
Part I: The Problem
A successful medical treatment satisfies and reassures. When you treat a stuffy or congested nose with over the counter (OTC) remedies relief is close at hand. Same for pain relief with ice, heat, aspirin or ibuprofen. When symptoms worsen, you seek medical professional advice, where one stop often leads to a clarifying diagnosis and a smart plan of action. Confidence swells as your health complaints ease up, and the horizon looks much brighter.
These straightforward examples look nothing like the torturous highway one must travel to attempt CPAP, where you quickly discover the very first interchange you had hoped to exit lands you miles away from your destination.
The Road Not Available
What you are about to read details much about navigation problems in healthcare, and specifically, the pitfalls in the delivery of care for sleep apnea—glitches that increase the risk of CPAP failure. Along the way, you will learn why the chief cause of CPAP failure is CPAP itself, a device that just doesn’t work for most who try it.
CPAP stands for continuous positive airway pressure; it pushes air into your nose and throat keeping your airway from collapsing while asleep, otherwise known as sleep apnea. Nearly everyone knows someone who achieved phenomenal, life changing success with CPAP, because normal sleep was restored, and the individual feels great again. In sharp contrast, we all know far too many CPAP failure stories, because more than half the people who start CPAP quit using it immediately, hate using it for a short time before quitting, or continue use but only sporadically due to the hassle and the lack of benefit.
Before we get into the weeds, let’s be precise about these CPAP failure cases. Again, at least 50% and more likely closer to 70% of cases fail. Why? Very simply, CPAP did not deliver as promised. It did not make these individuals sleep better and feel better during the day. In many, the experience made sleep worse, thus making them feel worse the next morning.
This simple description explains why CPAP failure rates are so high. At the outset, you have no reason to believe CPAP will make things better other than hearing stories from other users or your own healthcare pros, but when it doesn’t work for you, it’s rational and logical to give up.
If this point is so obvious, you might ask, “what has the field of sleep medicine done to counter this glaring obstacle?” Succinctly, sleep medicine adopted a highly outdated model of healthcare that discourages only the most fervent treatment-seeking individuals to push ahead, which in the CPAP scenario still may take months and possibly years to obtain benefits sufficient to lock in long-term use.
Yes, it’s a sad commentary, but once you know the details of these system-wide barriers, you will not only see how and why CPAP itself is such a pronounced problem, aggravated by the operations in the majority of sleep medical facilities, but also, how you and relevant healthcare pros might target these issues for faster treatment and above all better results.
Primary Care Doctors Don’t Know How to Care about Sleep
Here’s how this carelessly organized system operates. For most, you need a primary care doctor’s referral to a sleep center for testing. If we call this ground level, it’s almost unbelievable how many people fail to advance to the next stage. Most primary doctors still do not take sleep seriously; most rarely ask patients meaningful questions about sleep; some docs hold to outdated ideas such as only obese patients suffer sleep apnea. To top it off, primary care doctors are painfully aware of numerous CPAP failure cases among so many of their frustrated patients; these docs are reluctant to send you down the same road and have you return complaining about your messy encounters with a sleep center.
Shockingly, CPAP failure issues are so pervasive, primary care doctors have been raising alarms about sleep medical centers for years, wondering aloud whether these facilities exemplify a poorly developed or scrambled field of scientific medical knowledge or worse a scam to make money.
The most wasteful aspect among current professional sleep systems is time spent on diagnostics. Virtually anyone could spend an hour on the Internet and figure out whether or not they might suffer from sleep apnea. Indeed, with merely a 5-minute conversation, any sleep doctor with 10 years of experience, who learned a long time ago it’s not the size of your body (obesity) but the size of your airway (throat crowding), is more than capable of accurately diagnosing sleep apnea in upwards of 90% of individuals. Just 5 minutes, that’s it! No testing!
A solution to this ground level choke-point would bypass primary healthcare providers at least in the short-term to expedite diagnostic steps. The best new options would give individuals the opportunity to go directly to a sleep center without any bureaucratic hurdles blocking their paths, or most expeditiously, skip the sleep center and instead gain easy access to cheap wearables to provide sufficient data to answer at least the main question about sleep apnea.
Given wearables and potentially artificial intelligence (AI) are so close to solving these data problems with accuracy, reliability and validity, this second pathway is wide open to replace the role of the primary care gatekeepers who never signed up for sleep health management. As we used to hear in older advertisements, “coming to a neighborhood near you…” is exactly how the field of sleep medicine has a chance to change course and help sleep apnea patients advance at a faster pace.
The Next Stop, but Not the Last One: Sleep Medical Center
Next up in the maze are the professional sleep facilities, which include sleep doctor appointments, sleep laboratory testing, and even sleep technologist encounters (the latter if you’re fortunate to find a more advanced sleep center).
You might be wondering, are sleep centers also disorganized? Yes, they are but they suffer a far worse set of problems due to their failure to incorporate the most recent research evidence on how to diagnose and successfully treat sleep apnea.
There are many sleep doctors not just primary care doctors, who didn’t get the message more than 25 years ago that obesity is just a risk factor in the development of sleep apnea. Obesity doesn’t cause sleep apnea. Let me repeat: Obesity doesn’t cause sleep apnea. If you’re uncertain about what I mean, let me restate another way: Obesity doesn’t cause sleep apnea. Got it?
It's the collapsibility of your nose, throat, tongue and all the other muscles trying to keep your airway open that causes sleep apnea. Not sure if I mentioned this in passing, but obesity does not cause sleep apnea; all right, it worsens sleep apnea by lodging more fat in your airway tissues.
In other words, as many as 50% of patients who suffer from sleep apnea are not fat. They are minimally overweight, normal weight or underweight. If your sleep doctor doesn’t practice according to this scientifically validated claim, you could find yourself in a tug of war in your attempts to schedule a sleep study. And, you are most likely to lose the war and end up with limited or no care at all.
You might ask, “how can so many sleep doctors not be up to date on the basic principles in their field?” I wish there was a clear-cut and useful answer to the question. Instead, I must offer my opinions, based on 30 years of clinical sleep medicine practice, about several notable areas of outdated knowledge propagated by the majority of sleep doctors and which further block your path to success. We’ll cover these soon and describe how each one contributes to CPAP failure.
For now, let’s imagine you convince your sleep doctor to schedule a sleep study. By the way, just to follow through on your chances of getting a test, please note if you mention your problem is insomnia or you take sleeping pills or you suffer from psychiatric conditions, any or all these factors will make it more difficult to persuade your sleep doctor to order the study. And, if you tell them you’re “tired” during the day but not “sleepy,” they might tell you to go back to your other docs, because they have nothing to offer. And, yet, many such individuals as we’ve shown in our research studies absolutely need to be evaluated with a sleep study (1).
Let’s assume you’re getting tested. Nowadays, most centers push toward home sleep tests (HST) that don’t measure sleep…wait, what?! These devices demonstrate greater accuracy beyond current wearables, so that’s a good thing, but seriously most of these devices initially never measured sleep, just breathing and usually heart rate and oxygen. As I write, there are major entrepreneurial and technological trends pushing to add sleep metrics to HST, and some manufacturers are responding to make the upgrade. Regardless, might the HST data prove sufficient to detect sleep apnea? Yes. Might HST devices miss the diagnosis if your condition is not severe? That’s a big YES, and they will routinely miss your diagnosis or its severity, because of a very peculiar scientific fact, ignored by most of the manufacturers of these devices.
Into the Weeds
Briefly, there are three types of sleep breathing events. The “granddaddy” (discovered in the 1960s) is apnea, essentially no breath for 10 to 60 seconds. The “parent” event (discovered in the 1980s) is hypopnea, roughly 50% drop off in breathing. These two types—apnea and hypopneas—are all that’s emphasized on most HST devices. The very big omission is a third event (grandchild if you will, discovered in children in the 1980s and in adults in the 1990s), which is also widely prevalent yet goes undetected or ignored by most HST devices and sleep doctors.
This 3rd event has several complicated names (2)I won’t bore you with, so let’s just call it 3BE (3rd breathing event). With 3BE you lose between 10% to 25% of your breath, and these subtle events on their very own without any other apneas or hypopneas have been documented in medical journals (3) to cause insomnia, daytime sleepiness, fatigue, hypertension, fibromyalgia, nocturia, headaches….there’s more but you get the point. HST manufacturers and sleep doctors dismiss 3BE, which means there’s an excellent chance of your receiving the wrong diagnostic conclusion if your test shows too few apneas and hypopneas despite lots of 3BE. Do the HST manufacturers and sleep doctors who ignore the 3rd event care about your sleep health? Certainly, but I believe they could learn to care more.
If your HST yields no diagnosis or indicates borderline results, you can always request a repeat study in the sleep lab, where you should have been tested in the first place if your symptoms were subtle or complex. But insurance companies and government regulators have worked over time to convince sleep doctors to avoid the in-lab sophisticated setting, and the sleep doctors have largely acquiesced in relegating the sleep lab to more difficult cases.
Supposing you are fortunate to find a sleep doc who will test you in the lab, are you back on the highway to sleep success? Possibly, but as discussed above, even though it’s more feasible to measure 3BE in the lab, most sleep doctors ignore this data point and recognize only apneas and hypopneas. In other words, a “false negative” diagnosis (you suffer from a sleep breathing problem but it doesn’t show up on the test) is very plausible and occurs routinely in sleep centers around the world. Sometimes you’ll see equivocation with terms such as “borderline, subthreshold or mild” to describe your condition. Some reports actually use unscientific and unethical terminology, “mild sleep-disordered breathing that does not meet insurance criteria for a covered diagnosis.” Insurance has absolutely nothing to do with a scientifically defined medical diagnosis. This phrasing confuses many patients and leads to delays in care.
Even if you suffer from a diagnosis of mild sleep apnea, a concept frequently inaccurate and misleading in clinical as well as research circles, sleep pros are likely to dissuade you from CPAP. They expect you will fail, so why bother? They are of course partially correct in the assumption, because the theme of this article asserts the field of sleep medicine is rife with CPAP failure cases. When you read such a diagnostic report for so-called mild sleep apnea, it will provide boilerplate language to “lose weight, sleep on your side, visit an ear, nose and throat doctor, consider a dental device to hold the tongue forward,” and then last, it might mention the possibility of trying CPAP.
This remarkable lack of enthusiasm is bound to infect you with so much negativity that pessimism is sure to follow.
Is there another way? As a matter of fact, we developed a completely different approach to all this chaos by switching things around considerably in 2005 at our sleep center, Maimonides Sleep Arts & Sciences, in Albuquerque, NM where I was frequently cited as the top sleep medicine physician in the city. As we illustrate how poorly things play out in far too many sleep centers, I will also share some of our innovations. The subsequent contrast places an exclamation mark on what must be acknowledged as The Crisis of CPAP Failure.