CPAP users, tell me some stories

In My Humble Opinion
1

I know we’ve had CPAP threads before but I’d like to hear any updates or new tips.

I was diagnosed with sleep apnea about 15 years ago but I could never adapt to the CPAP. I think it was 50% discomfort and 50% wonky settings (I could not properly exhale). I was never very compliant and gave up too quickly.

Now I am feeling more motivated and ready to give it another go. I went to a sleep medicine physician this afternoon and will soon undergo a home sleep study, followed by, I am sure, CPAP therapy.

So I would like to hear any tips you may have, particularly about which specific masks you have found most tolerable. I’m also interested in stories about home sleep studies (my previous one way back when was inpatient/overnight, which it sounds like they don’t do so much any more).

I need better sleep. I feel strongly that it will happen this time.

Thanks,

mmm

2

The newer machines do much better on this, as most of them adjust the pressure on the fly as you inhale and exhale. But I noticed some brands do this a bit differently, so I’d suggest renting a few different ones at first, to see which ones work best for you. There was one model I tried that always seemed to have a slight delay where it felt like it was fighting me as I breathed, which was annoying.

3

I don’t remember the specifics of my home sleep study other than that it included an o2 monitor. The results were so glaringly obvious that I never needed any further testing.

You’ll probably be getting an APAP rather than a CPAP. The “A” stands for adjustable and it can change the pressure based on your breathing.

Even so, it can take a while to get used to the mask. I spent about a week using the machine in the evenings while sitting in my recliner and watching TV or reading a book.

Good luck! Once you get used to it, it’s a life-changer.

4

I love my machine. I use the AirFit N20 nasal mask and headgear from ResMed. My machine is the Dreamstation 2 (formerly the recalled Dreamstation).

I have zero complaints. Actually the worst part about getting used to it for me was the pain of getting a SOLID night’s sleep. When you are actually asleep and still for 8 hours at a time your body aches! Who knew?! I didn’t really do anything to combat that, my body just finally got used to it.

I agree with @Johnny_Bravo that if you have problems breathing out you need something other than a CPAP. I thought it was BiPAP but he may be right it’s APAP.

5

It might be! Who can keep up with all these paps?

6

I always want to add to these threads that this can set you up for expectation failure.
I feel absolutely no different using my CPAP. What I do know is that my arousal graph went from, basically, solid black (IOW I wasn’t really sleeping much) to almost clear. That was just the change from the diagnosis poly to the titration poly so I’d been using the CPAP exactly zero days.
I also now know what it’s like to be woken up by an apnea event if I sleep while not wearing it . . . it’s scary.

7

That’s fair, and I’ve said similar things to people about certain types of medication.

8

I can only speak for myself. Prior to getting my machine, I was exhausted for an entire year. My slepp apnea has gotten worse since then. I cannot get a decent night’s sleep without my machine. Wearing the mask takes some getting used to. Yes, wearing the mask is NOT sexy- but neither is the violent snoring I do without a mask. I just got a new machine. It is half the size of my old machine and MUCH quieter.

9

IMHO CPAP is oversold as ‘a wonder treatment that will change your life!’ Honestly what CPAP does is treat apnea, and that’s enough.
Just to expand on my above,
The apnea-hypopnea index (AHI) is the combined average number of apneas and hypopneas that occur per hour of sleep. According to the American Academy of Sleep Medicine (AASM) it is categorized into mild (5-15 events/hour), moderate (15-30 events/hr), and severe (> 30 events/hr)
According to the titration study I’m at 7ish events an hour, without CPAP I’m at . . . over 90!

And a word of warning about screwing with your pressures yourself,
The Poly tech wanted to get me lower than that 7. When he increased the pressure instead of obstructive apneas I started to have central apneas. Obstructives are when your soft palate is blocking your airway, centrals are when your brain forgets to breathe.
I hope the dangers involved in increasing your baseline pressure* are obvious.
*As opposed to messing with the amount of pressure decrease certain machines can be set to when you’re exhaling, usually in, older, straight CPAPs and not BiPAPs and the like.

10

Yes, it treats apnea - but that carries over into other aspects of your life. Many people feel more alert during the day. Apnea affects your health in many ways, e.g. hypertension, heart disease, and so on.

For me: I’ve said in the past that when I started my CPAP therapy, I didn’t think I felt better - but when I did NOT use it, I felt worse - which is a conundrum. I do think I sleep better with the damn thing - but I still do not feel more energetic or alert.

To be fair, I have other sleep issues, including Restless Legs Syndrome and excessive daytime sleepiness. If ALL of those are treated correctly, I function. Not alert or chipper, but I can manage my life.

As far as a home sleep study, I can’t speak to that - my last study was in 2010 and was the full on wired-for-sound in a sleep lab.

Masks: Make sure you get to try a variety of them. I’ve been mostly using a specific nasal pillow mask, as it’s the least obtrusive - though it’s so lightweight that the weight of the hose pulls on it - so I have a clip (consisting of a Velcro OneWrap hooked onto a badge clip) to attach it to my nightshirt. I sometimes use a slightly different model.

My husband uses a “full face” mask (which is a misnomer - it covers the mouth and nose). I personally don’t know if I could tolerate that - as a lifelong asthmatic I tend to get twitchy about anything that even SEEMS like it would impair my breathing, even when I intellectually know it would not. There is also a nasal mask (which covers just the nose, but otherwise somewhat resembles the full face one).

You want to make sure the headgear is something you can manage easily when half asleep. You may also want to use a separate chin strap to help you keep your mouth closed (if you go for a nasal mask or nasal pillows).

I would definitely encourage you to insist on an APAP machine. When I first got one, I did so - because I had good reason to believe that the pressures they measured in the “titrating” session were not accurate. As it turned out, the measurement was reasonably accurate, and I stayed with that pressure for many years until my AHIs (and maximum pressure) began to creep up.

I will confess to tweaking my own pressure setting somewhat recently: when I had COVID, I couldn’t tolerate the machine at all; even after I started improving, the machine seemed to aggravate the coughing. I bumped my range down a couple of notches - and that was sufficient to get me back to using it. My readings have actually been okay since then, so I may not bump it back up.

11

I had really bad undiagnosed sleep apnea for several years, in my 40’s. I was falling asleep at work, in meetings, and the subway home (but I always managed to wake up before my stop). Anyway, I remember the first night I wore it, I don’t think I moved all night, I was so deeply asleep. It was, in fact, a life changer for me.

I also use the AirFit F20 mask, which I love because it doesn’t have a strap across the forehead. Previous masks with straps left me with divots on my forehead, either one in the middle, or two spaced across.

Finally, I want to mention that I have never used the CPAP’s humidity attachment, and have not suffered noticeably from it. Occasional dry mouth is the worst that has happened.

12

With my old machine, if I didn’t fill the tank with water and it was hot in the room I would wake up with painfully dried out sinuses. My new machine has all kinds of fancy self adjusting temperature stuff and I’ve learned to fill the tank just in case.

13

Aside from making me awake, managing my sleep apnea has REALLY put a dent in my anxiety and depression. Granted, I was unmedicated before and unmedicated now but I am just so much more relaxed about life and more social than before. I don’t think I would have been able to handle being an elected official, in the public eye, before I got my apnea under control.

It’s amazing what a good night’s sleep can do for your body.

Regarding the humidifier…. I started with a humidifier and non-heated hose and eventually went heated and I really like it. I had to use the non-heated hose once when my heated hose broke and I noticed the difference. I didn’t like it.

14

Small comfort tip that worked for me: before CPAP, I slept shirtless. Since you can only/mostly sleep on your back with a A/CPAP mask on, my shoulders would get cold since I couldn’t ‘burrow’ into the covers, which inhibited sleep a little in the wee hours. I started wearing a light shirt to bed – helped a bit.

15

Been using my machine for nearly 3 months now. My noctural apneic events dropped from 23/hr to less than 1/hr. My BP is better, I have fewer awakenings during the night, I need to nap much less often during the day, I have fewer headaches. The full face mask is ok, the hose to it is quite flexible allowing me to burrow under the covers. It’s not been super life changing but things have improved by a fair percentage. I’ve not been suddenly filled with ambition to do stuff but I am happier with my level of relaxed laziness.

16

This has not been the case for me, in fact it is difficult for me to sleep on my back because the mask tends to slip down and wake me up. I sleep mostly on my sides. I like to sleep on my stomach with my legs stretched out straight, it feels good for my legs, but I can only manage that for 25 minutes or so before one of my arms falls asleep.

17

Thanks for all the responses, I appreciate every one of them.

When I started (and then failed) using the CPAP many years ago, one thing that prompted me to give it a go was a friend telling me that, after his very first night of using it, he “felt like a million bucks”. Well, I felt like crap my first day-after, because I got very little sleep due to all the new gear. This level of disappointment contributed to my overall frustration.

My sleep doc did give me some inside info - said to call the supply company if I want to try a different mask, but I need to do this within the first 30 days. Apparently I will be able to do this several times if necessary.

Another aspect of my previous poor compliance that I just thought of: I get up to pee 3-4 times per night (no, I don’t have diabetes). I recall crawling back into bed after going to the bathroom, being half-asleep, and not caring/“forgetting” to replace the CPAP mask. So much easier to just nod off. I will have to fix that somehow.

Thanks again,

mmm

18

Count me among the “changed my life” group. But also in the group that took a long time to get used to it. My machine is ancient, and has even rolled over its hour count and restarted at zero. I’ll skip brands/types as mine is no longer relevant. But it’s so important I got an identical backup via Ebay and have it ready when #1 croaks.

Some practical tips that worked for me:

  1. As @Johnny_Bravo said, using it upright at first can help. It stopped my limbic system from screaming “FACE HUGGER” at me until it got used to the mask.
  2. I take the hose/mask into the shower with me in the mornings. I can wash and run water thru everything, then hang it all up on an unused towel rack to dry. IME, the mask lasts longer this way.
  3. It helps to have the hose held above you, or clipped somehow to the headboard above. This stopped entanglement considerably.
  4. The website cpap.com is a good place for replacement head/hose gear. Once you’ve figured the sizes and types, they keep it on file and replacement is just a few clicks.
  5. If (like me) it becomes really important to your sleep, it’s a good idea to start saving the old parts as you replace them. Reservoirs, hoses. clamps, and the several parts of a mask can be cleaned and dropped in a container somewhere. I take a small version of the backup kit when traveling. Many of the mask parts are delicate and it’s nice to just snap in a replacement rather than wait days for shipping. Especially if you’re in a temp location far away from home.
  6. Also, if you become really attached [rimshot] to it, you may want to get a backup battery and a 12V adapter. Many models are actually 12V anyway, and only the reservoir heater requires house current.
  7. One thing no one has mentioned is that you’ll now be breathing filtered/moistened air for a third of your life. This had a noticeable effect on my allergies – not completely fixed but definitely better.

Best of luck to you, I hope it really helps.

19

I just got a scrip for yet another CPAP machine, having worn out at least 2, maybe 3 now. My event rate had been 74 per hour, which apparently counts as “severe”. With the machines, I dream again; in fact I think of them as my dream machines.

I wear a full face mask, which as Mama_Zappa points out only means it covers nose and mouth (though there are masks that cover the eyes too). I sleep on my front, with my face downward at an angle, wedged between pillows. CPAP means you can still breathe even after burying the entire front half of your head. I change positions mostly just by angling left versus right.

It seems like the hoses keep getting smaller in diameter. The last new hose I got was quite small, hardly bigger than my thumb. While on the road, the night before a big hike event, the CPAP suddenly mostly cut off my air flow in the middle of the night, and I messed with things for a few sleepy minutes without figuring out that the spring on the outside of the hose had delaminated from the thin walled tube, so the thing could twist shut. I taped it temporarily, and yesterday replaced it with an older hose that I had never opened, which was much bigger. Last night was weird, because the machine was pushing air in so vigorously on each inhale. I guess the old hose was always throttling it a bit.

The hose elbow fitting on the mask can swivel so that the hose goes down, left, right, or up, with respect to my normal standing posture (so it’s N, S, E or W when I’m lying down). I always tried to keep it pointed up, so I could roll without having to wake up and reroute the hose. However, this swivel is flimsy and inclined to leak, so now I weld it into position with pipe cement.

My pressures stay high, 20 mm IIRC. I need tight straps plus the weight of my head to minimize mask leaking. There’s no way in the world I could use a nasal pillow!

Always humidified. That was a big improvement, especially in winter with dry room air.

20

Definitely NOT my experience, with my equipment. I’m a dedicated side sleeper and this has not been an issue, and I’ve no trouble covering up under the covers either.