Please tell me it will get better...please?

[Xcat9]

So it's only been 2 nights with the cpap. And I thought I was exhausted before? It's even worse now. Does this happen sometimes as part of getting used to it? I admit once I'm asleep - it's the sleep of the dead. But then I start feeling suffocated and wake up to finding my mask has moved and I think last night the machine even turned itself off thinking the leak was intentional on my part. Then I can't fall back to sleep again - at least not right away.

I know they say not to nap - but really I've had better luck using it that way.

The therapist got me the nasal pillow sort - as I am really not a fan of things touching my face. But now I wonder if I wouldn't be better off with the sort that covers the mouth too as this is changing so many of my sleep habits.

1) Cpap pressure
2) breathing from my nose (I am very much a mouth breather)
3) dealing with this thing stuck to my head
4) disrupting my husband and kitties
5) I sleep like a rotisserie (always moving, side- stomach- side - back - side - etc)

Even after the 2nd sleep study I wasn't rested...I just don't know how much more exhausted I can get.

[Muse-Inc]

Welcome aboard! Great info and folks here!

So it's only been 2 nights with the cpap. And I thought I was exhausted before? It's even worse now. Does this happen sometimes as part of getting used to it?

I say my first 4 nights were from hell! I only slept during my 45 min ramps, then on night 5 slept without waking the entire night. I must say that my 8-10 pee trips/night stopped on night 1...hooray!!!

..last night the machine even turned itself off thinking the leak was intentional on my part

I turned my machine's mask auto on-off feature off so I could set the mask alarm on; during my cold when I dislodged a pillow, the alarm woke me up right away so I could fix the mask -- great feature.

...they say not to nap...

Are they trying to acclimate to sleeping with CPAP? It can be very challenging.

...The therapist got me the nasal pillow sort - as I am really not a fan of things touching my face. But now I wonder if I wouldn't be better off with the sort that covers the mouth

Get a RespCare Hybrid, it has pillows and covers the mouth. Comes with 3 sizes of pillows and 3 sizes of oral cushion; the pillows can be adjusted to 2 heights. All in all, it makes it easy to get a good fit.

...sleep like a rotisserie (always moving, side- stomach- side - back - side - etc)

Hilarious image!

[rjjayrt]

Yes, It usually gets better. Its an individual thing as it relates to how long it wil take. It seems from your post that your major issue is your mask. Pillows is rarely a good mask to start with, there are those who have done well, but not usually. After taking into consideration your sleep habits I'd suggest either a Quattro or Flexifit 431 Full face mask. After you get used to whichever you choose then transit to the nasal pillows with a chin strap. Keep whichever FFM you chose earlier as a backup. You'll find that once the mask issue is fixed things get a lot easier, pressures may need to be tweaked but thats part of the therapy.

[BlackSpinner]

Yes get a full face mask - but - make sure it fits - lie down to try it on.

It gets much better. But it is not like wearing a cast - it requires a mental attitude change, it my take a month or more for your subconscious to accept the thing on your face and the fact that it can stand down and let you asleep deeply. For years your subconscious has been keeping you a live by waking you up, it is not going to shut up just because you put that mask on twice. You have to relate to it the way you relate to a toddler - simple words and eliminate the word NO. Your mask is now to become your security blanky.

Go ahead and nap but put the thing on when you nap. Eventually you won't need it.

[Xcat9]

Thank you, Thank you, thank you!

I truly needed to hear that from each of you.

[Gerryk]

It does get better. Sooner for some and later for those like me who are slow learners. First off turn off that auto off on your machine. That way you won't wake up again with it shut off because you bumped the mask or something similar to that.

I say I am a slow learner because I had so many problems with cpap and my mask.

Gerry

[roster]

Please tell me it will get better...please?

It may not get better.

Unless .... you take charge of your therapy.

Your prescribed CPAP pressure settings may not be the best ones for you - it happens often.

Your mask may be leaking excessively - a very common problem.

You could still be having many lengthy apneas.

Fill out your equipment profile (text please not images) so we know what you are using.

Do you know how to check your data for apneas, hypopneas, snores and mask leak?

[SleepingUgly]

If you are a mouth breather, you shouldn't be in nasal pillows. Your choices are a full face mask or a "hybrid" type of mask, which is a combination of nasal pillows and mouth mask (there is one called Hybrid, and another Liberty, I don't know if there are others). There is also the Oracle, which goes IN your mouth, but I can't recommend it or not because I couldn't fall asleep with it for other reasons. I don't really think it should be your first or 2nd line of interface.

Check whether your machine is set to auto off or not. I have had a big debate with myself about whether there is something wrong with my machine or whether I'm turning it off in the middle of the night. When I had nasal pillows, initially I took off the mask in the middle of the night, but eventually stopped. With the full face Quattro, I would wake up and find the machine off and the mask on. During the night I would be convinced the machine was defective; afterall, what lunatic would WANT to leave the mask on if they turned the machine off?! By day I would wonder if I started trying to get the whole thing off, and fell back asleep before I could complete the process. The other night I woke up with the machine off, the mask on, and the hose disconnected. Go figure.

I am going to take a stand against napping if you're not otherwise a napper for medical or age-related reasons and if it doesn't endanger you not to nap. Your best chance of acclimating with this is to sleep with it, and your best chance of sleeping with it is if you're tired.

[scrapper]

You've made very important initial steps to success.........you were tested, you picked up your machine, you found this board, and you've reached out for help. Keep in touch and we'll all help you be successful--------IF YOU WANT TO BE.

Welcome...you've come to a good place. (I'm never sure if this is the RIGHT place....but most of the people are good here. )

[Tielman]

So it's only been 2 nights with the cpap. And I thought I was exhausted before? It's even worse now. Does this happen sometimes as part of getting used to it? I admit once I'm asleep - it's the sleep of the dead. But then I start feeling suffocated and wake up to finding my mask has moved and I think last night the machine even turned itself off thinking the leak was intentional on my part. Then I can't fall back to sleep again - at least not right away.
...
I just don't know how much more exhausted I can get.

I'm only 3 nights into CPAP myself, so I can sort of understand. My first night I must have adjusted my mask (nasal) 15 times, and when I'd wake up to turn over I'd spend 10-20 minutes "breathing" to make sure the mask wasn't leaking, adjusting it, and seeing if it was tight enough (it was TOO TIGHT!). It was hard to go to sleep, but the second and third nights were better.

Suggestion: try NOT to take naps !! That way you'll be really tired at night. If you do take naps, turn ON the machine, don't "sleep" without it.

You may want to check with your DR, or the company you got the machine from and see if they have "Exhalation Relief" turned on, this helps a lot with the "suffocation" feeling. I felt like that at the Sleep Lab (which didn't have this feature on their CPAP machine). My equipment contains the CFLEX+ which really helps with the pressure (ask about "Exhalation and Inhalation relief" - the specifics are different from machine to machine).

Also ask (today!) about a different type of mask, try it at the DME (important!) see which ones feel better. My DME had 5-10 different masks on display, of varying types (nasal, pillow, and full-face) .

Keep using it, it WILL get better!

Tell your husband and the kids, and the pets that the machine will help you to LIVE LONGER and HEALTHER, without it, you won't be.............. Ask them which they prefer

Good luck!!

[Xcat9]

Gerry - I am slow at this too...but I'll get there one day, I'm sure we both will.

Rooster - I started filling everything out. It's from memory, so I'll need to double check tonight when I get in front of it. I don't have any software to use - just a memory card to share with the providers.

The mask doesn't leak when I can get it seated just right...the problem is when I unseat it - while sleeping - then I get flustered and can't get it re-seated right.

I am wondering now if maybe one of the mouth covering varieties wouldn't be best in that even during the 2nd sleep study I still had just as diminished oxygen levels even with cpap - due to how small my septum is (imho). Hmm. my resp therapist is going to check in with my on Wed - I'll ask if we can see about trying one.

I'll keep at though. It's just a bit disheartening in that all the friends who came out of the wood work when I came out about treatment- all had miraculous experiences even starting with their second sleeps studies.

[KatieW]

Yes it will get better, as you learn how to work with everything. What you're experiencing is a huge adjustment. Read as much as you can, learn as much as you can.

In addition to this forum, here is a good read:

http://smart-sleep-apnea.blogspot.com/

And about your other friends on cpap....maybe it's like childbirth, they've forgotten the pain.

[Muse-Inc]

Your Elite displays data. Press the LEFT and RIGHT arrows and hold for 3-4 secs. The Review menu will be displayed, using the UP and DOWN arrows lets you scroll thru the data. Make a log to write down each night's data: AHI, AI, HI, leak, usage (to track how long you're actually using the machine). It resets at noon, so ck before noon.
If you cannot see the data in the LED, post so someone can tell you how to navigate to the right place to turn on Smart Data.

Don't be surprised if your DME doesn't have the RespCare Hybrid, some might carry a similar ResMed Liberty (fits quite differently, I have both).

[Imacpaper]

I started a little over a month ago and it can get better. I too keep laying there adjusting and feeling for leaks. I started with the nasal pillows myself but I'm also a mouth breather and couldn't adjust, like you said too many changes at once.Here are acouple of things that helped me.

1. If you nap wear your mask. This not only help me get used to it but it also allowed me to play with it with out bothering my wife.

2. They tried to add a chinstrap to hold my mouth shut, didn't work. With all these straps I felt like I was making out with a squid (and not in a good way). I finally got a Hybrid. I found this helped me sleep with my mouth closed. But the Hybrid was harder to seal then the pillows. Makes sense that the more seal to seal the harder to seal (say that ten times quickly)

3. Somewhere there is a thread about holding your tongue at the roof of your mouth. This seals the back of your throat. I now do this all the time and now it has become a habit and now do it when I sleep.

4. After doing the above I have en sleeping with the Optilife (nasal pillows) and have no problem. Less on the face, No leaking problems, no mouth breathing, and feeling better during the day.

Hang in there and remember your not alone.

[roster]

Rooster - I started filling everything out. It's from memory, so I'll need to double check tonight when I get in front of it. I don't have any software to use - just a memory card to share with the providers.

As far as mask leak, you can be having excessive leak and not know it - the data needs to be seen.

I believe that machine has data capability. Can a ResMed user post how to see the data please? Oh, I see Muse did it while I was posting. Good job Muse.

Xcat, Can you post some of your data when you get a chance?

I like your user name. All cats should be ex-cats.