Sleeping Like a Baby…with Colic and a Full Diaper

woman sitting on chair while leaning on laptop

Have you ever had something in your life that felt so big and overwhelming, that the thought of talking about it made you feel like you might explode? Of course you have. We all have. And that’s what this post is about. It’s the reason why I haven’t broached the subject here, or on our Gracefully and Frankly podcast, or with anyone except those closest to me, and one nice woman I recently met.

I’ve been afraid to blow up and end up in tiny smithereens!

It’s a CPAP machine. I’ve been using one for about a month and to summarize, it hasn’t been going well. CPAP stands for continuous positive airway pressure. You wear a mask and a machine attached to a hose sends air to keep breathing passages open, thereby reducing sleep apnea, which is when the passages close and the brain is denied oxygen. Sleep apnea sufferers stop breathing and then suddenly gasp as the brain tells the throat – hey! We’re dying over here!

But, let me back up. I had my first sleep test when I was still living in Toronto. (About 17 years ago.) If you’ve only had one recently, let me assure you that they’ve come a long way. That first one was brutal. Now, six studies later – most of them in London – the sleep specialist decided it was time for a CPAP. “Just try it”, he said. “It might make a huge difference.” I did one more sleepaway to test a machine and mask, and was given a prescription.

This isn’t easy to admit but I’m a snorer. Not a cute, oh-look-at-the-cat kind of snorer. A who’s-operating-a-buzz-saw snorer. It’s not pretty, nor is it easy for my husband to live with. As for me, I sleep right through it.

Although I’ve given Derek carte blanche to give me a shove so I’ll change positions, he can’t bring himself to assault me in the night. (I appreciate this!) So, I finally gave in and got the CPAP and a Nasal Pillow mask, which I’d worn in my last sleep test. It doesn’t cover the mouth or nose. It fits under the nostrils.

Nasal pillows are two soft nozzles that fit into the nostrils to deliver air. A thin strap is attached that goes over the back of the head.

The air pressure is set by the CPAP store according to the doctor’s prescription based on the sleep test. So, when you get the machine home, you have no control over the strength of the air. You can only control whether it ramps up slowly or immediately gives you full power. That’s a personal preference. The machine sends data back to the store where technicians can look at how it’s going, which they do, at least for the first while. An app also fires off helpful tips when data shows you might need it.

The machine costs $900. If you use it for a minimum of six hours per night for one week, the government will pay for part of it. The consumer’s cost: $500.

CAUTION: Whining road ahead!

After a couple of nights, I called the store and said this mask wasn’t working for me. I went in and got a different, bigger one. One night with the new mask and I fell in love with the old mask. Sometimes you have to experiment.

I have two complaints, and they’re big ones.

  1. When the doctor said, “Just try it, it might help”, I took from that – and should have asked – whether I could return the machine if it wasn’t helping. Because as it turns out, you can’t. It makes no sense to me. The machine is like a clock radio. It can be reprogrammed for someone new. I can trade in a mask that goes up my nose, but cannot return a machine?
  2. Based on my experience, I don’t think my case is severe enough to warrant using the machine. Now, see complaint 1 again.

Some medical journals I’ve read say it can take up to a year for some patients to feel an improvement in their sleep. That’s a long time to go around feeling depleted and tired all day. That’s what the CPAP is supposed to fix! When I have a moment, I Google alternatives. Legit health websites say CPAP is still the gold standard, but other options have arrived. There’s even Mouth Taping, which is just like it sounds, albeit with medical tape, not duct tape.

I haven’t had such a consistent period of terrible sleep since I quit morning radio. One night, I lay awake until the sun started to rise. Another time, the power went out during a storm and I woke up in a panic because there was no air. I’m using it every night in the hope that I’ll get used to it but this is a long road. Several people I’ve talked to said they knew right away that the machine was helping them. I feel it’s making my life and my sleep worse.

So, I’m looking for any and all experiences, advice, and insight. Should I hang in there longer and see if there’s improvement? Has anyone else gone through this and not found relief for a long time? The woman to whom I talked about the machine has been using it for ten years and still absolutely hates it. It’s not encouraging.

My health is a priority. But right now, using this system is feeling more detrimental than helpful. I hope to hear from you, CPAP users. Tell me what you know! Thanks.

14 thoughts on “Sleeping Like a Baby…with Colic and a Full Diaper”

  1. “Just try it, it might help,” he said as he handed me a tab of acid. 36 hours later, I awoke on a strange couch.

    But seriously . . .

    Sorry, but it’s hard to believe this technology is the gold standard in the year 2023. The machine can’t send the information to your phone? How is there not an app you can use?

  2. Hi Lisa. I had sleep apnea for years. My sleep study calculated that I stopped breathing 40 times an hour. CPAP to the rescue. I must admit it has been a life saver. I wake up refreshed. No more snoring and I don’t wake up from not breathing. I’m pretty convinced if I didn’t get it, I would likely have had a heart attack by now. My daughter is an RT and used to work for Medigas. She set up dozens of people and could probably help your situation. If you like you could talk with her to get some expert advice. ~Steve

      1. The mask I used is the one that covers the nose. I know depending on the severity and feel, the mask recommendation can be different.

  3. I used to have night terrors for years, also, my husband would say I make sleep sounds, he’s a sweetheart but would always make me get off my back if I fell asleep that way as he would hear me stop breathing intermittently. After a few sleep studies they diagnosed sleep apnea, not severe but a solid B+. I was put on a machine the same night of sleep study because they thought that was best as you usually have to go back again to be fitted or something, it was years ago so…. The next day I had the energy of a toddler. I have used it ever since and the night terrors stopped and my husband says my sleep sounds have improved. They do take some getting used to. Mine goes right over my nose and you can tell when it seals. Also, we ‘ground’ ourselves while sleeping – see the Earthing movie on YouTube. We wear a bracelet at night connected to the ground of a receptacle in the power bar my CPAP is plugged into. My husband, the skeptic, also says it helps his sleep. I hope this helps and you find it easier to use as I believe it really does help.

  4. If the CPAP was prescribed for you then, like me, you were having multiple apnea episodes per hour. I was actually oblivious to any of that except my SmartWatch seemed to be detecting something and I told my family doctor about it.

    The sleep study showed that I was experiencing dozens of episodes per hour. So, how the body handles that is basically with an adrenaline rush to get the airway opened. Doing this dozens of times per hour all night every night exponentially increases risk of stroke or heart attack.

    As for a solution – sometimes you have to kiss a lot of frogs (I mean, try a bunch of masks). I’m not a mouth breather, so a nose-only mask can work. For mouth breathers, the nasal only mask can work with mouth taping. I don’t think mouth-taping alone (no mask, no cpap) will resolve apnea.

    For the first few weeks I was walking into walls. First thing I lost was Deep Sleep. Playing around with variations on the nasal mask helped but not a full solution. I found that turning off Ramp feature was helpful. Otherwise those first minutes felt suffocating to me.

    Installing a Command hook on the wall just above the corner of the headboard has allowed me to elevate the hose which has helped a lot. I tried playing with various CPAP-friendly pillows, none of which helped in the least (but we’re all different so can still be worth a try). I know you love the EnVy and that’s probably just as good as any other option.

    I prefer to sleep on my side, with 2 pillows. I found that I have to angle the top pillow somewhat, so that the mask/hose are off the edge of the uppermost pillow.

    I find that the heated hose is an essential (it’s an extra cost item). I always use lip balm and Vicks VapoInhaler (same shape as lipbalm) immediately before putting on the nasal pillows.

    Other than that, it’s practice and more practice. It absolutely takes time to “get used to it” let alone to feel the benefit from better quality sleep. Occasionally I’ll still have a “low score” night but generally I’m in the 97-100 range now, and even on the low score nights my events will be fewer than 5/hour.

    I remember being on the struggle bus in those first weeks, not so many months ago, and I wish you success.

    1. Thanks so much, Lynn. I did kill the ramp-up time for the same reason! I felt like it was suffocating me. The heated hose sounds interesting. I’ll definitely look into that. Thanks for sharing your insight. I hope to get off the struggle bus soon!

  5. Keep with it Lisa! I’ve had mine over 10 years now but clearly remember what sleep was like before my CPAP machine. I was snoring like you say and disturbing my significant other significantly. It took time and it’s not the most attractive looking apparatus to put on but it keeps me breathing and I’m still here!

  6. I tried a CPAP machine but couldn’t get use to it. I probably didn’t persevere long enough. I wish you luck Lisa, hopefully you will have better luck than I did.

  7. Hi Lisa, I’ve been wondering how you made out with your sleep study. I was diagnosed with sleep apnea about 14 years ago after experiencing several episodes of waking up gasping for breath and feeling so exhausted I was falling asleep at work, in movie theatres, etc. When I got my CPAP machine it was life changing, I loved it! I was much more alert and slept so much better. About 8 years ago I had lost some weight and started to find the air pressure far too strong. I was having difficulty getting to sleep and would wake up through the night with air blowing out all around my mask and my mouth so dry I couldn’t move my tongue. I had to stop using the machine until I went for a new sleep study after which the pressure was decreased slightly, but I still had the same problem and gave up on using the CPAP. Recently I’ve started to experience some of the same symptoms I had when I was originally diagnosed, and am considering a new sleep study. I’ll chat with my doctor at an upcoming appointment, but am feeling conflicted about my options.
    Thanks for sharing your experience with us and best of luck moving forward!

  8. One thing I forgot to mention, besides the heated hose is a must, is the water you use. I was told distilled water but switched to purified water from Simply Pure water in St. Thomas, it keeps my reservoir very clean and free from scale buildup. If it gets dirty a little vinegar works wonders. I got my equipment at Western ProResp on Westminster, near Victoria Hospital. Very helpful staff.

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