JUST BREATHE: CPAP basics–how to get through the adjustment, how to improve long-term outcomes

The gold standard treatment for sleep apnea is PAP therapy. How does it work?

In the case of obstructive sleep apnea–in which the upper airway collapses during sleep, partially and/or completely obstructing it and restricting critical airflow–the positive airway pressure (PAP) delivered via mask props open the airway so that the airflow is open and unobstructed. See C is for CPAP for more particulars.

CPAP, incidentally, stands for Continuous Positive Airway Pressure (meaning the airway pressure delivery is one metered dosage), whereas BiPAP stands for Bilevel Positive Airway Pressure (meaning the airway pressure deliver is one measurement for inhale and a separate measurement for exhale) and APAP or AutoPAP stands for Automatic Positive Airway Pressure (meaning the airway pressure has preset customized settings based on your established range of pressure needs).

There are other PAP delivery systems as well, ASV being the most common. ASV stands for Adaptive Servoventilation, a kind of “smart” PAP delivery system based on algorithms which anticipate breathing patterns. VAPS technologies (Volume Assured Pressure Support) correct respiratory patterns literally breath by breath. These latest technologies are generally reserved for complex sleep disordered patients who may have more than one, often severe, respiratory issue.

So you’ve been diagnosed with a form of apnea and given PAP therapy as your treatment. What happens next?

Masks range from nasal (as seen here) to oral-nasal (also known as full face masks) or nasal pillows.

You will meet with a specialist who handles PAP machines, masks and other devices. They will supply you with the devices you need and teach you how to use them (how to assemble the machine, hosing and mask; how to turn on the machine; how to fill the humidifier; how to assemble the mask; how to position the mask on your face and use its various features to adjust it) as well as how to clean and maintain all the parts. Then you basically go home and use your PAP.

Here is a typical setup: PAP machine with humidifier basin, tubing, and PAP mask with headgear

Generally, the systems today also include a chip (called an SD card, smart card or memory card) that records data from your machine for your physician to review. This is often, if not always, required by insurance companies to show proof you are “adhering to” or “complying with” treatment.  Some labs ask you to bring your chip in while others use equipment that remotely downloads it from your machine to their clinic for review. Insurance companies will not reimburse for PAP therapy over time if the patient fails to use it.

Insurance companies generally require at least 4 hours of use per night, at least 5 nights a week. You may have a bad week, followed by two good weeks, and still be more or less compliant. But the goal, ultimately, is to use it every night for every hour that you sleep. That way you guarantee your therapy will do what it’s meant to do: keep your airway open so you can get the necessary oxygen your body needs to perform its many functions (all the way to the cellular level) as you rest.

So you receive your PAP setup, and you begin to use it. For many people, it’s as simple as that. You start breathing again at night and you feel better over time. But for others, the challenge lies in adjusting to this new therapy. What might happen? You might:

Sometimes this is due to an incorrect pressure setting (too low) OR is the natural and temporary response to adjusting to pressure at first OR is the result of improper ramp settings. Give your PAP setup a week or two to allow yourself to adjust. If you still feel this way, ask your sleep specialist for advice. If you find it intolerable from Day One, don’t wait two weeks; call them ASAP.

Sometimes this is due to an incorrect pressure setting (too high) OR is the natural and temporary response to adjusting to pressure at first OR is the result of improper ramp settings. Give your PAP setup a week or two to allow yourself to adjust. If you still feel this way, ask your sleep specialist for advice.  If you find it intolerable from Day One, don’t wait two weeks; call them ASAP.

You may need to adjust your heated humidity settings. Note: some older machines do not have heated humidity, while others may not have humidifiers at all. If you have an older machine, see your sleep specialist about getting a new one. You may also need to check to make sure you are adding enough distilled water to meet your nightly needs.

This is separate from the experience of too much or too little pressure. Just having the mask on your face may make you feel claustrophobic, even without pressure. If you already suffer issues with anxiety, this could be a normal extension of that problem. Even if you aren’t otherwise anxious, wearing a mask all night may still generate feelings of anxiety.

One way to eliminate this is to allow yourself opportunities throughout the day to wear the mask without the machine (such as while watching TV or knitting or reading in a chair or while lying down). The more you practice wearing it, the more “normal” it will come to feel. It is okay to slowly work your way into nightly use of your PAP therapy if claustrophobia is an issue. Aim for a couple of hours a night and add a little more each night if you can.

Insurance companies do honor an adjustment period (each company is different, but 30 to 90 consecutive days seems to be the norm). You need to achieve minimum compliance by the time established by the insurance company if you are to be reimbursed for your equipment.

If you still feel claustrophobic after a week, ask your sleep specialist for advice. If you find it intolerable from Day One,call them ASAP. You may have an opportunity to try on other masks to determine which might be more comfortable and create less anxiety for you.

Struggle to keep the mask on; either you pull it off at night or it comes off

Sometimes they come off. If you are a tosser-turner, even the most perfectly adjusted mask could come off. Some people discover they have taken the mask off themselves at some midpoint in the night, even tossing them onto the floor or the nightstand. That is part of adjustment behavior, too. Part of your brain is still giving you instructions even as you sleep. Just replace your mask and go back to sleep. Your brain will finally give in as you adjust. A mask that comes off now and again, while not doing you any service as a therapy, is not going to be a problem with compliance rates unless you don’t put it back on again.

Soft headgear wraps like this one can help to eliminate pressure marks

Have problems with skin irritation

You might find red lines or pressure marks on your face where the mask pressed against your skin. Generally, most of these marks are caused by the mask being overtightened. The masks are created to “seat” on your face in a way that seals lightly once the pressure is turned on. 

A small amount of incidental leakage is not going to interfere with your therapy compliance or leak values, so try not to worry too much about those numbers; your lab, if they are reviewing your numbers remotely, will decide when the leak is too high and work with you to make the proper adjustments. 

Some people use special face cremes marketed to work with masks, others use fabric linings to prevent moisture buildup. Ask your sleep specialist if these are right for you, keeping in mind that cremes may actually exacerbate skin irritation and linings, if not used correctly, may alter the effectiveness of your mask seal.

Your sleep specialist will call this aerophagia, or air swallowing. It can come from mouth breathing, a common problem for people with obstructive sleep apnea. Often, oral breathers discover after a couple of weeks on PAP therapy that they no longer need to breathe through their mouth. The brain retrains itself to let the nasal passages do the work of inhaling and exhaling, which is the way we are all supposed to breathe. 

This can be corrected by adding a soft chin support to your mask which helps to coax the mouth closed while your sleep. 

If you don’t automatically return to nasal breathing after a couple of weeks on the mask and a chin support doesn’t help, you may need to consider a mask that covers both the nose and mouth, which allows your jaw to drop open without any fear of breaking your mask seal.

You can also check your pressure settings to make sure they are correct, or ask your sleep specialist for help with this. Too much pressure can lead to air swallowing, too.

Today’s machines are practically silent, so if yours is not, you may think about trading it in for a new model. Some people, incidentally, prefer the white noise emissions of the older PAP machines, so this may actually be a blessing for some.

If your mask makes funny burping or whistling sounds, it’s a sign that it’s not positioned correctly or it could be over- or under-tightened. Play around with the fit until it goes silent again. If this doesn’t happen, get advice from your sleep specialist about fitting or potentially trying out a new mask.

Masks these days are getting lighter and smarter, with less parts and a closer, easier fit. You may simply need to update yours.

Have a bed partner who does not appreciate the value of your therapy

Editor’s note: Hmm. Not sure what they mean when they say CPAP isn’t sexy. I’m pretty sure this is designer Zac Posen’s doppelganger rocking a nasal PAP mask.

This is a much bigger problem than it should be. Your need for PAP therapy is no less important than your need for any other prescriptive treatment (such as an asthma inhaler or an insulin injection system).

Without PAP therapy, you put your entire body at risk for many other chronic problems; if you already have heart disease, diabetes or respiratory problems like COPD, PAP therapy may indeed save your life.

If your bed partner tends to complain about your therapy, have them attend your visit to your sleep specialist so they can be versed on the critical value of maintaining compliant PAP therapy for their continued health. Adequate breathing and oxygen during sleep is not an optional, cosmetic problem; it is a function of optimal health and, without it, has been proven to lead to lower mortality by all the major chronic diseases that plague our society. 

If it’s the noise of the machine that bothers them, consider trading in your old model for a newer more quiet one or have your bed partner try wearing earplugs or use a white noise machine to offset the sound.

If it’s the appearance of the mask, or the presence of the tubing, they need to understand how and why the therapy works and that for the vast majority of the night, they will be asleep and won’t even see the mask or notice the hosing. The mask is only used during sleep and not for any other romantic bedtime activities, after all.

Usually the sleep specialist will contact you about this and have you come in to review mask fitting practices and to determine whether a different mask might be better for you. Ultra high leak values (as determined by each mask manufacturer based on their own pressure settings) are something that the lab should be watching out for and addressing as they happen.

Sometimes, problems with PAP are more general and are related to using worn-out equipment (for long-time users) or practicing poor cleaning and maintenance habits on newer users. To learn more about how to generally care for your PAP setup, check out this guest post by sleep technologist and respiratory therapist Rui de Sousa.

Here’s one of the latest new ways to defend against obstructive apnea: The Inspire device, which stimulates the nerves that operate in the upper airway to prevent its collapse. It is an implant device that requires a surgical procedure and followup, but it could be a lifesaver for those who have tried other treatments and failed to comply.

Despite all this advice, many patients become frustrated and decide that PAP doesn’t matter. They give up and never go back to their sleep specialist. This could be you or a family member or other loved one in your life. You always have the choice to refuse treatment, but at what peril? Learn what happens if you don’t treat sleep apnea.

Or, you may be all for treating your sleep apnea, but the PAP setup, after a very concerted effort, just does not seem to be working for you.

Though PAP is the gold standard for treating sleep apnea, there are other therapies for sleep apnea that don’t involve a mask. 

Often, trying a new therapy is a good alternative; or, these alternatives may leave you wanting to return to PAP.

In either case, you are better informed on all your options with any medical treatment so that you can make the decision that is best for you.