CPAP users, tell me some stories

Cool! Sounds like you had some positive progress!

I got my CPAP just over five years ago. It took me nearly a month to get used to it, but I was highly motivated as I also found out around the same time that I have a heart condition that can be exacerbated by sleep apnea.

I started off with a fighter-pilot type nose-and-mouth mask, which I did not particularly like because of the bulk attached to the front of my face. But the bigger issue was the fact that I roll over in my sleep, and woke up once to find the hose wrapped around my neck. :grimacing:

So my sleep doctor suggested a Phillips Dreamware system with nasal pillows. In this, the hose attaches to the top of your head so you can roll around with no issues. It’s also a lot more comfortable that the full-face mask. I did have to add a chin strap because I was getting air leakage out of my mouth.

My CPAP machine is a ResMed AirSense 10 AutoSet for Her (even though I’m a him). My sleep doctor’s practice prescribed this model for all of their patients of both sexes because it has more options.

Too many positive stories so all add a negative one. I have severe sleep apnea that will probably kill me eventually so I am motivated to get help. I have not been able to get it to work. I am able to keep it on for maybe 3 hours a night.

Back when I first got my machine, I read that sometimes doctors won’t order a humidifier (or insurance companies will balk at the extra cost). Which is insane - some people don’t use the humidifier but for others, it makes a HUGE difference in tolerability.

With my current machine, it has the fancy “figure out the humidity” software, but the tank is really not large enough if I’m sleeping in on a Saturday. I wake up with burning nasal passages when it runs out (either that, or a vague burning smell from the heated humidifier running with no water left in it). So all in all, the humidifier is a positive, for me - except for when I sleep in.

I guess the chamber in my older machine was larger, or it didn’t steam off the water as fast, as this was never an issue there.

Bizarre. I have to wonder what those “options” are. And why only us ladies are supposed to need them???

Interestingly, I was once sent the “for her” version of my mask, when I switched to a new DME provider. I had told them, when placing an order, that I needed such and such mask, and DO NOT SEND ME THE PINK ONE because I have a large head for a woman (hell, I’ve got a big noggin for a man).

Yep, They sent me the pink one. I raised hell with them over that.

Did you go from the Dreamstation to the Dreamstation 2 after the recall? I had this exact problem - I was constantly running out of water if I slept even the tiniest bit longer. I was able to remedy it by changing the humidity level on the machine. I actually did run out of water this weekend when I slept 10 hours but since I lowered the level it hasn’t been a constant problem for me, and I don’t have a problem with the lower humidity.

Have you worked with a respiratory therapist on this? They can be quite helpful at sorting out CPAP issues. I hope you can find something that works for you, you’re already “2020 Death Pool Champion”, so let’s not have you competing for further awards in that general area. :thinking:

23 an hour? Rookie numbers.

I have worked with a whole sleep team. It’s time to go back I’m sure.

Do you know anything about Inspire? It’s something they suggested the last time I was there but it sounds fucking terrifying.

I’ve no direct experience with it for myself, nor with patients of mine. It certainly sounds interesting and potentially helpful but your sleep team would be your first best source of info. Along with that, if you can track down folks who have had the procedure and talk to them, that would be a great source of feedback too. Good luck, keep breathing!

I use one (not sure of the model off hand). I had 18 apnea events/hr. Now 3. It doesn’t help me sleep any better but I figure it’s better for my health if I use it.

One thing that helped me a lot was a timing adjustment. It constantly pushes air but reduces the pressure during exhale. I was having problems because if felt like it wasn’t letting me breath out. The tech adjusted how much delay there was and it made a world of difference.

Early on the pressure was too high and I ended up with air in my stomach. Belched up bile while half awake, which the machine promptly tried to force into my lungs. Then I woke up quickly!

I use a full face mask. My machine has auto adjustable pressure but sometimes it still gets so high that the mask leaks air (usually into my eyes). I shut it off then turn it back on and it’s fine again.

To keep it from leaking air I strap it on pretty tight. Because of this it pulls my chin in and it seems to be affecting my bite. In the last month I’ve had to be careful eating or I will bite the inside of my lower lip.

Mostly I think it’s ridiculous that this is the state of the art for sleep apnea. I’ve used mine for over a year and still regularly have problems.

Good luck

It shouldn’t be doing any of those things. If “the tech” can’t adjust it to your satisfaction, in my opinion you should be asking for (i.e. demanding if necessary) a different machine (or possibly a better tech). Using a CPAP is bad enough without having to fight it like that. Don’t let them brush off your concerns.

If you are getting your equipment from a medical supplier, consider using a different one. You may need to get a copy of your prescription, or maybe you can just tell the new supplier who your sleep doctor is and they will take care of it.

I’ve been using one for the last. . . 4 - 5 years or more. I’ve been using the dreamweaver cpap nasal mask over the last couple of years. I tried looking that one up on Amazon and all I could find were replacement parts, which is good because I’ve replaced the whole thing bit by bit over the years. But I’m not sure if you can buy a new one. . . anyway, I like it. It’s a nasal mask with a tube-framework that connects at the top of your head.

I never had trouble adjusting. But, I never planned on failing to adjust either. I just did it. It’s not comfortable but I think I sleep better.

Perhaps you meant “Dreamwear”?

Very similar to the nasal pillow/connected at the top of the headgear system that I use. In fact, I got one of those when I was filling in until my ResMed headgear could be delivered. The top of the head connection is really nice and I’m grateful to the respiratory technician in the sleep lab who was so thoughtful when she selected a test mask setup for me.

That’s it. Dreamwear, not weaver.

For my insurance I had to show I was averaging over 5 hours of use a night. I couldn’t. I had to return it or pay the full amount out of pocket.

OP check in again.

I had a good night with my (old) machine. Went to bed at 10 pm, up at my normal time of 5 am, and only woke up once to hit the bathroom - a modern day record.

More importantly, I kept the mask on all night without any difficulty at all.

And today? I felt…fine. Not tired. Not foggy. Still feeling pretty danged alert as I write this at 6 pm.

I should add that I’ve adopted a go-to-bed routine - shower, half hour of reading, then lights (and TV) out at 10 pm. We haven’t mentioned a nighttime routine in this thread, but I think it’s pretty important.

Here’s to more good nights.

ETA: Also no late night snacks. I eat nothing after 7 pm.


My previous machine had a humidifier which took about twenty minutes to warm up before I could put the mask on and go to sleep. So part of my nighttime routine was to get into bed, turn on the heater, and then read while it warmed up.

My new machine, for some reason, does not need a warming period.But I still read for a while after I get into bed. Habits die hard.


I’ll second that.

Some people truly find they cannot tolerate CPAP therapy, but I think a lot of them give up too easily when there are things to try - like different masks, or whatever. I asked them for a small amount of Ambien to make me sleep the first couple of nights with mine - and found that I didn’t really even need the Ambien after the first night.

Apparently a large percentage of users stop using the machine. I’ve read 30-50% or more.

My father-in-law’s picture would be in the medical texts next to “typical CPAP user” - he’s short, has a short neck, and has been obese all the years I’ve known him. He’s got type 2 diabetes - not well controlled - heart issues (a pacemaker, and has had at least one heart attack). He’s got kidney issues. And the sounds he makes when he sleeps are truly frightening (he no longer snores quite as loudly, but instead basically HOWLS periodically).

We nagged him into getting a sleep study, and he did try CPAP, and claimed that he felt a bit better with it - but ultimately refused to use it. .

For the person who found the hose around the neck: you’ve found a solution, but another option for anyone with that concern is to do what I do, and clip the hose to my nightclothes.

I was wondering the same thing about the name!

DME providers likely can get these, and they’re available from online vendors. You really do need to replace all the mask parts regularly.

Oooh - one last thing before I log off for the night:

There are studies showing that playing the didgeridoo can make a difference in people with obstructive sleep apnea. Something to do with the circular breathing pattern, and maybe strengthening throat muscles.

I’ve got a cheap plastic didgeridoo in a box, that I need to find time to learn to play. So if anyone on the Eastern Seaboard hears what they think is an elephant being tortured, relax - it’s just me.