I’m a CPAP dropout: Why many lose sleep over apnea treatment

When doctors told Frances Faulkenburg she had sleep apnea, she was more than ready for relief from her tired-all-the-time existence. She used to fall asleep at red lights while behind the wheel. At night, she'd wake up gasping for air, heart pounding. Her husband told her she snored.

But Faulkenburg, 47, couldn't tolerate the CPAP machine her doctor prescribed.

"I just could not get used to the face mask covering both my nose and mouth," said Faulkenburg, who lives in Oviedo, Fla.

"It was claustrophobic."

CPAP, or continuous positive airway pressure, is often one of the first solutions doctors suggest for sleep apnea. With this disorder, a person's breathing stops and starts so frequently during the night that it can lead to or exacerbate health problems. The National Sleep Foundation estimates that more than 18 million American adults have sleep apnea.




But the health effects of untreated sleep apnea can be serious. People struggle with anxiety, tiredness and low productivity. There's even an increased risk of high blood pressure, heart attack and stroke.


"Think about it as sticking your head out of a car window with your mouth open at 60 mph versus 25 mph," said Mertens. "The high pressure can be very overwhelming."

So Mertens' team goes to people's homes to help troubleshoot problems. That includes explaining sleep apnea and how a CPAP can help.

"Picture the air passage at the back of their throat like a garden hose with no water in it. The hose collapses down," said Mertens. That's what happens when a person with sleep apnea is sleeping.

"When we put a CPAP on somebody, it's like turning the water on for the garden hose," she said. "The hose then pops open and stays open."


Follow-up is key. Mertens' team checks in with patients during the first three to five days, again between 30 and 45 days and again between 60 and 90 days.


"I got a mask that covered just my nose, which let my mouth stay closed. That ended up being the whole issue," she said. "I sleep so good, I can't sleep without my CPAP now."


"One of the first things that I hear is that the thing itself is intimidating — they see the tubing and mask and it's blowing air in their face — they have real concerns: ‘Am I actually going to sleep better with that thing?’

"It is a big ask to go to bed with this thing strapped to their faces," she said.


"It's just like breaking in new shoes or new jeans," said Gurubhagavatula. "Once it's broken in, it's less of an issue."



Patients who don't comply may end up paying out-of-pocket. That's the topic of this week's episode of the podcast "An Arm and a Leg." Kaiser Health News co-produces the podcast.


Gurubhagavatula said she has patients whose machines have been taken away because they couldn't follow the insurance company rules.

"They may have child care or elder responsibilities that makes their sleep disrupted. Or they sleep in chunks of time because they work certain shifts," she said. "The rule is arbitrary because using the machine, even if part time, is beneficial."

Nate Wymer, 44, said his machine is lying around his home somewhere in Holly Springs, N.C., but he hasn't seen it in years.

"When I had the mask on I had to think about breathing out of my nose," said Wymer. "That's not something I normally do. After a couple of nights, I just couldn't do it."

"My doctor never really followed up from what I can remember, so I back-burnered it," said Wymer. "But, if you get in front of somebody, actually talk to them and make sure everything is going OK, that would have been nice."



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