The 7 Stages of CPAP

Jim was incredulous. “How many times did I stop breathing?”

I repeated my answer. “791 times over 7 hours. That’s 113 times every hour. Plus, your oxygen level went down to 59%, which is very dangerous.” 

Jim was quiet for a few seconds. He then lowered his voice and asked, “My father had sleep apnea. I don’t want to use CPAP.”

This was one actual patient that I remember from a few months ago.

Being diagnosed with obstructive sleep apnea and using CPAP for the first time is like what you may go through after a death of a loved one, a divorce, or a major job change. It’s a major life change, and there are common stages that everyone undergoes. Mike Moran posted a very insightful essay on CPAPtalk.com which I’ve summarized here, called the The Seven Stages of CPAP:

1. Denial. This is a common trait with many sleep apnea sufferers. The last thing you want to admit is that you snore like a train. Snoring is something everyone laughs about and you don’t want the embarrassment of being the brunt of a joke.

2. Realization. Your spouse tells you that you are constantly gasping and choking at night, and after doing some research, you finally realize why you’re so cranky and tired during the day. Learning about the dangers of untreated obstructive sleep apnea is an eye-opening experience.

3. Diagnosis. A formal overnight sleep study confirms that you stop breathing over 50 times every hour, with your oxygen levels dropping to levels below 80%. A CPAP study confirms that your apneas are completely controlled at the measured setting.

4. Frustration. This can start from the time you undergo the sleep study, or are waiting for the CPAP machine to arrive, and even after you start using your CPAP machine. It’s like waiting for a biopsy result after a breast or colon biopsy to make sure it’s not cancer. You’ll experience a combination of anticipation in possibly sleeping better for the first time in years, as well as the fear and anxiety of having to use a machine on your face for possibly the rest of your life. There can be a delay in your CPAP machine delivery, which only aggravates your frustrations. Once you start using your machine, you don’t get the relief that you’re expecting. There are a number of major and minor issues that you relay to your sleep doctors and your equipment company, but it’s been slow getting an answer from anyone.

5. Immersion. You work tirelessly with your doctors and equipment providers, bugging them to the point of possibly being annoying. You scour the internet and connect with other like-minded CPAP users, devouring as much information as possible to accomplish your mission: to get better sleep. You test various different masks or machines, different gadgets and other options that make your CPAP use more helpful.

6. Ownership. You take responsibility for your own care, and you don’t have to depend on your doctors or equipment providers. You still work with your healthcare providers, but you take the initiative to ask the right questions, and modify your treatment regimen to see what works or doesn’t work.

7. Inflation. You may get only a few hours of sleep in the beginning, but the periods are now getting longer and longer. You don’t wake up to a “wow” morning, but are beginning to realize that you’re not as tired in the late afternoon as you used to be, or you’re not falling asleep in certain situations. This stage can go in and out over time, but becomes more consistent as time progresses.

 

How many of you have gone through these stages? Which one was most challenging?

Please note: I reserve the right to delete comments that are offensive or off-topic.

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4 thoughts on “The 7 Stages of CPAP

  1. I was relieved and thrilled to discover that there was a reason why I was so exhausted all the time. So I, for one, embraced my diagnosis of sleep apnea.

    I was also grateful that a solution existed; I was not the slightest bit sorry to learn that I would be using a CPAP machine for (very likely) the rest of my life.

    But then there was the problem of getting used to it!

    In my experience, the challenge was two fold:

    (1) FINDING THE RIGHT MACHINE. I began with a CPAP but after a few years after a visit to you, Dr. Park and at your suggestion, I tried and changed to an APAP. It proved to be much better machine for me as compared to the CPAP. I know that for others, the CPAP is a better choice.

    (2) FINDING THE RIGHT MASK. This was a process of trial and error. Curiously, I shunned nasal pillow masks (“I don’t want anything poking in my nostrils!”) and now…I LOVE my nasal pillow masks. I get less leakage (as compared to the nasal masks with which I began) and switch between two pillow styles: an AirFit P10 and a Swift FX.

    It took me a long time to figure out the best combination of machine and mask that would work for me. For the record, it took me about six or seven months to get used to sleeping with my CPAP but after the first month or so, week by week, things got better, eventually much better. Later, when I switched to pillow masks, I was already sleeping pretty well attached by mask and tube to a machine.

    The combination of the right machine for me — APAP — and the right mask (nasal pillow style), made the difference. Even so, it took a long time so my advice to newbies is: keep working at it!

    The effort pays off.

  2. First, I would like to thank you Dr. Park for all the free information you provide by going through the medical literature and translating it in a way we can all understand. I would like to know if sleep apnea has anything to do with acne or skin issues? Maybe you could make a post about it? Thanks again! Appreciate your work.

  3. Jorge,

    Sleep apnea and skin disorders is something on my list of topics to be covered in a future blog or podcast.

  4. I was reluctant to get a sleep study because I was struggling to pay my out of pocket medical expenses and did not want another bill. When I told my doctor that a survey at the surgery center during my colonoscopy screening indicated I may have sleep apnea, he referred me to our local pulmonology office where sleep studies are done. He said he was not trying to scare me, but if I had sleep apnea I could suddenly die in my sleep one night. When I did not return the Pulmonology offices call, they wrote a nasty letter to my doctor and he showed it to me. When I told the sleep specialist folks about my concerns about costs, they suggested I start cheap by wearing an oximeter overnight at home. They were alarmed at how low my oxygen levels got during the night. They scheduled me for a full blown sleep study and put me on a wait list and also prepared to have me get an oxygen machine to use while waiting for my sleep study. A cancellation occurred a few days later. I couldn’t sleep with all the wires at the sleep lab until late but the study confirmed my sleep apnea was severe (103 times per hour) and then I had to have another study to set me up with a machine. This is when I experienced stage 4 above. After the diagnosis study that told us I had severe apnea, I had to wait several weeks for the 2nd study to get setup with a CPAP machine. I guess once they ruled out it wasn’t something more serious they were not in such a hurry anymore. But I was afraid to sleep because I had learned how serious the issue was. When I woke up after 4 hours of sleep on CPAP I felt better than ever in at least several years. I have been on CPAP therapy for almost 2 years and fully compliant because I have learned its importance to my health. I still have sleep troubles because of sinus inflammation that causes me to wake up in pain each morning in my face and makes it hard to motivate myself. Reluctantly again because of potential costs, I am now seeing an Ear Nose Throat Specialist and they did a CT scan of my sinuses today. Hopefully I can get the sinus therapy I need to fully appreciate how much CPAP is doing for me.