New to CPAP and forum. Hello!

[SleepyMarlo]

Hello. I'm new here. Just started using CPAP four nights ago. This will be night 5. It's slowly getting more tolerable every night but I still feel completely exhausted.

So I have lots of observations and questions, and I'm just happy to find a place to share.

I went in for a sleep study because my hubby tells me I've been snoring for a couple of years, and for about the last year, I'm just EXHAUSTED. They found I have partial apnea, and I was waking up on average 21 times an hour. Well, NO WONDER I'm so tired!

The first night was horrible, and each subsequent night has been a little better. But I'm completely whipped and exhausted. I really want this to work so I can feel better. But toughing it out through this adjustment period is going to be hard, because it's making me even more tired than I was before I started.

I went with the Quattro mask because I have small nostrils and tend to be a mouth breather. But the full mask thing is really bothering me. I just hate it when my nose itches and I'm stuck behind that mask! And the Quattro is not so easy to just pull away from your face so you can itch your nose. It requires unclipping, etc. And inevitably, my nose starts itching as soon as I get the mask back on. My sister uses CPAP and has nasal pillows, which she really likes. I may try that. I can usually breathe better at night if I put a little Vicks in my nose, so maybe that would work. I've been using Vicks with this mask too. Another thing... if my mouth does happen to fall open, then the air poofs out my cheeks and flaps my lips a little. Which I don't think is the same thing as chipmunk cheeks? I thought that having a full mask would allow me to breathe through my mouth, but it wakes me up and I'm finding myself trying to keep my mouth shut.

My husband also has apnea, and he's trying... AGAIN.... to use his CPAP upon consulting with a doctor (my doctor) in our new city. The hilarious thing is that he pulled out his box of CPAP goodies and he has about 5 different masks. He has a nasal pillow thing. I think if I can get small pillows, I could just audition that and see how it goes. And it completely bugs me that when I breathe in, the whole mask sucks onto my face like an alien, and when I breathe out, it un-suctions.

Those of you who use a full mask, how do you sleep on your side? When I roll over it tends to push the mask out of place and then it starts leaking. If I pull the straps tight so that I can be on my side, it's uncomfortable. I've been investigating CPAP pillows online. I'd hate to drop $60 and find out that wasn't the answer.

I'm happy that the airflow doesn't seem to be bothering me and I can go to sleep. Hubby tells me I'm still snoring though. I called the CPAP department, and she said it's just because it can take awhile to get use to therapy and for it to start working. What do you guys think about that? Did you still snore after starting therapy?

I read the "change" article and like the author referenced, I was sort of hoping that if/when I lose some weight, I may be able to stop using it. But even if I do lose some pounds (and I'm working on it. I found a great app to track calories and activity), I will still continue to be my age and get older.

I really want this to work because I really want to feel better. I don't have any health problems yet (at least not obvious ones like heart issues), so I'm hopeful I can learn how to ride this bike and eventually, feel more rested and head off future health problems before they start.

Anyway, I'm happy to have found this forum and thanks for being here.

-Marlo

[Starlette]

Welcome. Yes you will learn ALOT on this forum.

Before folks can assist you, they need to know what kind of equipment you have. Click on the following: User Control, Profile, Edit Equipment. One the bottom click "text". Easier to understand what equipment you have with words rather than pictures. Again, welcome to the forum. Time for me to go to bed.

Starlette

[Pad A Cheek]

Welcome SleeyMarlo,

The feelings you are having now sound perfectly normal to me. When you start this therapy and you begin to sleep at least some better (when you are not adjusting your mask or dealing with leaks) you begin to pay back a "Sleep Debt" that has built up over the time before you started CPAP. This tends to make you feel more tired at first. It does gradually get better and better. It also can take some time to get adjusted to sleeping this way and it usually takes 3-6 masks to narrow down the one that you want to use. The search for the golden mask is one we have all been through. Once you find the one you love and works well for your sleeping style, it is great. (At least until the manufacturer does not make it any more) You said that your mouth opening up wakes you up. If you can train yourself to keep your mouth closed, you may be able to use a nasal mask or nasal pillows style interface. Many of us who were mouth breathers before CPAP, now sleep with our mouths closed because we are getting the air we need through our noses alone.

It is great that your husband has a stash of assorted CPAP interfaces for you to try. Try them all. I would suggest trying one during a nap to start with. I will say, if they are older than 6 months or so, the seal may not be as good as a new one of the same style. The seals do wear out over time and should be replaced when they start to leak too much.

I would not put Vicks in my nose, but that is just me. As far as losing weight to get off CPAP, that usually does not happen. Sleep apnea is pretty much a rest of your life diagnosis, but it is not bad at all once you get the kinks worked out. I can think of many worse diagnoses.

Good luck with this, and welcome to the forum.

Karen

[MelindaJoan]

Hello, SleepyMarlo. I started using my machine on 7/5 and, like you, chose a Quattro FF mask for the very same reasons. I have since switched to FX for Her Nasal Pillows and just want you to know that they do come in "extra small." It's the only thing extra small about me. I think I'm acclimating well to the nasal pillows and find that they're far less constricting and feel way better on my face. That said, I don't think I'm having a big problem keeping my mouth closed but I am a side sleeper so that might have something to do with it, too. Anyway, I'll try every mask if I have to, but for now, this one is working for my extra small nostrils.

[Roobin]

Hi, SleepyM -- Welcome to the club....even if it's one we'd all like to quit!

I've just finished my 3rd week of being on the hose and yes, I often feel even more tired than before. I started using the FX Nasal pillows, but after a week switched to a full mask (Quattro) because of too many leaks / too much mouth breathing. However, I had even more leaks with the mask because, like you, it leaked every time I turned on my side. Sooo, went back to the FX but this time I've used the Puresom Ruby Chin Strap (the adjustable one). It's really worked for me: very few leaks, comfortable and let's me use the nasal pillows. So perhaps you can give this a try.

Even with the pillows and the strap, I am still feeling tired and am waking often during the night. There are so many issues still to be worked out, but I know I'll get through it. This message board has been a wonderful experience for understanding issues, identifying solutions, and making me realize EVERYONE has problems adjusting. If others have mastered XPAP, so will I (and you, too).

Good luck.

[Wonderbeastlett]

Yes that sounds about right! I am coming up to my 1 month anniversary of Cpap! The first week of using my Mirage Quattro was terrible! I had so many leaks and I wouldn't use it the whole night thru. I ended up bursting out in tears at 1 in the morn after almost 2 hours of trying to stop leaks! I finally bought the gecko nasal pad which is a gel mask that covers your nose and stops leaks. It's been pretty amazing now that I've got the majority of leaks gone!

For sleeping on your side, I wear the top part of my headgear looser than the bottom. I pull it tight around
my mouth now that the gecko nasal pad does the work of leak plugging. First I would try sleeping with your mask off the edge of the pillow, which you can control head support and such. Once I got my nasal pad I have been able to put my face mask and all on the pillow. Also I hear pad a cheek pads are really good for sealing leaks to! Just hang in there and don't stop your treatment! Keep looking and trying things until it works for you!

[SleepyMarlo]

Last night was so awful! My nose kept itching, then my mouth, then I would roll onto my side and lose the seal. I'm pretty sure I was nowhere near 4 hours of usage last night, and I'm only 6 days down on my "insurance proof" period. I finally just took the mask off because I was desperate for sleep. I'm going to go get small nasal pillows today and try my husband's mask. I had no idea this was going to be this hard. Also, I have a whole new empathy for my husband's struggles when he gave it up a few years ago after trying several masks. And I thought he was just being stubborn!

I really appreciate your feedback and suggestions. I will start integrating tips and tricks. But dang... this is exhausting!

[Pugsy]

Welcome to the forum. So sorry you are having so much trouble. This stuff just isn't easy for some people.

Chipmunk cheeks are when the air goes up the nose and down into the airway and instead of proceeding down the airway where it is needed to hold the airway tissues open it tried to exit out the mouth which is the first available exit. The tongue normally acts like a door to block this premature exit. When the tongue is in place in the roof of the mouth it normally will block the air and won't go into the mouth. When the air enters the mouth it is much more difficult to get it to go back down the airway. If mouth is shut then the cheeks will inflate and you get chipmunk cheeks. Normal response eventually is for the mouth to open and the air to exit the mouth. Sometimes in little lip flutters and sometimes with big open mouth gushes of air. Sometimes the tongue can be trained to stay in position to keep the door blocked. If you want to use nasal pillow mask you will need to probably practice keeping the tongue in the roof of the mouth. Easy to do while awake but not so easy to do when asleep. We usually tell people to make a conscious effort to keep the tongue in the roof of the mouth (or whatever position to keep the air from entering the mouth) while awake and hope that habit forms that will carry over into the night when asleep. It can be done.

Give the nasal pillow mask a try. You might find that you breathe through your nose better than you thought you would.
Many people find that the humidified air actually helps keep the nasal passages clearer and they breathe better.
There are ways to limit nasal congestion and make them work. There are ways to limit mouth breathing also.
Won't go into all that until you see if you can actually use them then see what problems might need to be worked on.

[SleepyMarlo]

I really appreciate the feedback. When I get better, I'll be happy to share my wisdom with others.

Just talked to a CPAP tech - he said my average pressure is turning out to be 11.5-12, which he said would be high for tolerating nasal pillows. He wants me to try to stick with this mask for another week and see how it goes.

About the snoring, he said I would probably snore during ramping and then stop. And he said I'd learn how to do it, and get better at side sleeping and all of that. So.... sticking it out.

[Tino2You]

Hi SleepyMario,

I have the same setup as you. FX Nasal Pillow, Ruby Adjustable Chin strap and my pressure is 9-16. I had all kinds of mouth leaks when I started, After listening to Pugsy, I got a chin strap and started putting my tongue behind my front teeth on the roof of my mouth. I also got a tube of lansinoh to use as a glue of sorts for the pillows. My leaks stopped. Now to begin with I had the strap cranked down so opening my mouth was a chore. Now a month later, my mask is comfortably loose, and so is the chin strap. It is a gentle reminder now. I forgot to wear it one night and when I checked my data the next day the leaks were tolerable. I do not try to get to zero AHIs. I am quite happy with 3 or less and a very comfortable sleep.

Hang in there. Oh and welcome

-tino

[Pugsy]

Just talked to a CPAP tech - he said my average pressure is turning out to be 11.5-12, which he said would be high for tolerating nasal pillows. He wants me to try to stick with this mask for another week and see how it goe

That is a bunch of horse poop.
There are people here on this forum using up to 20 cm pressure with nasal pillows and they are doing just fine.
I myself have seen upwards of 18 cm on my reports and I have never used anything but nasal pillows.
It isn't that hard at all. I don't know where these people get the idea that 12 is high for nasal pillows.
12 cm is nothing for nasal pillows at all. Lots of people use a whole lot more and have success.
If you want nasal pillow mask..get one. It does fill a tiny bit weird having the air go up the nose (at first) but it really is a non issue unless you just hate it and if you do...you would hate it even at 5 cm pressure.

[GumbyCT]

Just talked to a CPAP tech - he said my average pressure is turning out to be 11.5-12, which he said would be high for tolerating nasal pillows. He wants me to try to stick with this mask for another week and see how it goes.

That is a bunch of horse poop.
There are people here on this forum using up to 20 cm pressure with nasal pillows and they are doing just fine.

Raising hand here, I start out at 18 and get up to & over 20cm. The biggest problem is mouth breathing. IF you can't breath thru your nose then it is futile.

So try this - with one finger block one nostril, breath thru the other nostril for 60 seconds then block the other nostril and breath for 60 seconds. Talk about how you feel and what you heard. IF that was difficult then you need to get that fixed first.

IF you can breath thru your nose w/o troubles then you can learn to breath thru your nose BUT must do it while you are awake and aware or you will not magically revert to breathing thru your nose AFTER you fall asleep. It does take time & effort but can be done, I did it

He wants me to try to stick with this mask for another week and see how it goes.

Speak to this tech AND his boss but make it clear so they won't say "the 30 day mask trial is over now there is nothing I can do".

Good Luck

obtw - for some reason RT's are taught that anything over 10cm is too much pressure for nasal pillows. Believe me the nose will do just what it has to and regulate the amount of air it allows in.
My guess is there has never been an RT who used nasal pillows AND they are not permitted on the internet or to use Google. I can't explain it.

To the naysayers here - IF we were meant to breath thru our mouths then why do we have a nose? Mouth breathing happens when we feel we are NOT getting enuff air - whether we are awake or sleeping. IF we can get enuff air thru our nose we can STOP breathing thru the mouth.

Good Luck Again

[brucifer]

Just talked to a CPAP tech - he said my average pressure is turning out to be 11.5-12, which he said would be high for tolerating nasal pillows. He wants me to try to stick with this mask for another week and see how it goes.

I agree with Pugsy and Gumby. My CPAP Autoset is set at a flat 13 cm, and I'm doing wonderfully using an OPUS 360 nasal pillow mask. The nasal pillows fit just fine, and I have hardly any leaks at all when I sleep. Sounds like your DME rep just doesn't want to take the mask back. Your insurance premium is paying for it, so you deserve to get the CPAP mask that you want. Hope your DME rep becomes more cooperative.

[cherylgrrl]

I have been going through an almost identical experience for the last 4 weeks. My prescribed pressure was 11, I started with the Quattro mask but really wanted nasal pillows to work. I hated the full face mask for the same reasons you have been wanting to try something else. When I started monitoring my AHI and pressure readings from the chip on my auto CPAP machine, I realized I was getting very poor theraputic results with the nasal pillows and not great results from the Quattro.

Thank God I learned about the SleepWeaver mask from other people on this forum and gave it a try. You can order it from cpap.com and get a free 30-day trial. Not only is it completely comfortable -- it is an all-cloth mask, no hard plastic -- but I've gotten much better results from it at lower pressure than the other masks.

I also thought I was a mouth breather and thought I needed a full face mask so I ordered a chin strap to use with the Sleep Weaver. The chin strap was still on its way when I got the mask, so I thought I'd try it and did just fine! So now I can wear glasses in bed to read, scratch my nose any time I want, sleep in any position, and even have a sip of water while wearing it. The manufacturer's customer service reps have told me they are working on a full-face version, so hopefully soon there will be an option for everyone.

There is a great independent review on YouTube at https://www.youtube.com/watch?v=em4P8zW6yg0

I know this mask has made the difference for me. Compliance is no longer a struggle for me, I hardly know I'm wearing a mask at night.

Best of luck to you, this group is great and will give you a ton of support!



- Cheryl

[Sloop]

Well SleepyMario, you've already gotten a lot of good advice, so I'll just go off on a tangent

Every Mario I've ever known, has made pizza. Do you have a parlor?