lip flutter during bipap treatment/shallow sleep?

[albigensian]

Help! I think that lip flutter (while wearing nasal pillow + chin strap) is destroying my sleep -- and I need some advice about what to do about it! I'm hoping that some of you experienced bipap users can give me some advice.

Here's what's going on.

I am four months into bipap therapy and getting great results, according to what I am understanding from OSCAR and the dimwitted Resmed data, but I am tired more days than I am not. I am really, really tired after sleeping for (what the data tells me) is eight or more hours a night. Yes, I don't wake up as frequently as I did before treatment; yes, I no longer have bad morning headaches that take hours to lift. But I'm still tired. Maybe not quite as tired as when I was not treating my apnea, but tired -- dull-witted, sleepy, drowsy.

After a lot of puzzling over this, I think that the problem is that lip flutter/lip pop is keeping me from falling into deep sleep. I think that I am constantly being disturbed by these tiny but noticeable (to me, not to OSCAR) facial tics. I think this is why I am so tired.

I'm turning to this forum to ask if anyone has any advice other than "get a full face mask and get rid of the nasal pillow." That's the only options that I can see, but I'm still very new to all of this.

In case you aren't familiar with the term, lip flutter/pop is when air is forced into your mouth from the back and then it escapes by forcing an opening in closed lips. It’s like a mouth fart, if you’ll excuse the analogy – abrupt, disruptive, and unwanted. (BTW, I really had to search to find a name for the darned phenomenon! "Lip flutter" seemed to be the most common.)

I wear a chin strap. I have tried tape. Tape stops the air from escaping but doesn’t stop the air from popping into my mouth so abruptly that, if it happens as I’m trying to fall back to sleep, it keeps me awake. I’m guessing that, if it can keep me from falling asleep, it can also disturb my sleep.

The effect of using the tape? It doesn't stop the air from being forced into my mouth. The forced air kind of pops my lips out, under the tape, and then they (the lips, that is) fall back into place. I don’t know where the air goes if it can’t push its way out. I guess it just gets pushed back into the trachea and down into the lungs. I’m using the recommended gentle-on-the-skin tape but I can already tell that this isn’t a viable long-term solution. My skin is too sensitive, especially on the lips. And I think that the lip pop is as disturbing as the full lip flutter.

I first noticed the lip flutter/mouth pop when I woke up during the night. Often, it kept me from falling easily back to sleep after I awakened. I would lie there, with flutters coming and going, trying to wait it out, almost getting to sleep and then being pushed back into wakefulness, until there was a long enough pause (and I was tired enough) that I could slip into sleep.

At first, I thought about lip flutter entirely as a problem of getting back to sleep after waking up during the night. (I wake up at least once during the night, a tremendous change from my pre-treatment nights.) Eventually, though, as I have puzzled about why I am so tired all of the time, though, I have come to suspect that the flutter and pop went on while I was sleeping – pulling me out of restful sleep, pushing me to the point of almost-awakening.

I slept with my phone’s recording app turned on, and here’s what I found. Yes, it goes on all night, even when I am sleeping. It can stop for as much as several minutes and but always starts up again. When the flutter/pop occurs, it often recurs about 4-5 seconds later. I find lots of sequences of seven or eight of these. Sometimes, a sequence goes on for several minutes – ever four or five seconds. The intensity of the flutter/pop varies: some are larger than others. There are periods of time during the night in which no noise is discerned by the recording app: those would be the periods of undisturbed sleep. This rarely goes on for more than a few minutes, though.

Full disclosure: I can't be sure if the noise on the recording is me sucking air in or lip flutter popping air out. I'm fairly sure that it's the latter, though, as I've tried recording mouth breaking (sucking air in) and it doesn't leave a noise on the recording app. I've used two different chin straps and they seem effective. I don't slip into mouth breathing while I'm falling asleep, to the best of my knowledge, and I don't wake up with a cracked sore throat. So, I'm fairly certain that what I'm recording is lip flutter/pop.

Lip flutter/pop doesn't occur when I am falling asleep, probably because I use the ramp setting and so I have a very low pressure setting during that initial period. Does this mean that the pressure gets too high when I'm asleep? Is that what's causing the flutter/pop? I am posting the pressure data from the past few months. I don't get much higher than about 12, as you can see.

Seeing a four-to-five second space between flutter/pop sounds is disconcerting. That’s not even enough time for a proper in-breath or out-breath. I’m guessing I’m forced into some fairly shallow breathing during the flutter/pop periods, and that can’t be restful.

When I can’t get back to sleep because of flutter/pop, I sometimes move from back sleeping to side sleeping. Flutter/pop seems to diminish when I roll to my side. Doesn’t entirely go away, but lessens significantly. Unfortunately, I have physical problems that mean that I can’t sleep easily on my side: I wake up in pain after about 90 minutes and have to adjust my posture, so side sleeping guarantees a night of broken sleep.

Other info: no new meds. Only take a few prescriptions for my allergies – nasal spray, Montelukast, nothing with sleepiness as a major side effect. Before I was diagnosed, I’d already done everything on the sleep hygiene checklist. I sleep on my back with a neck roll and a small support under my head to be sure that my spine keeps its natural curve but that my head doesn’t roll back (with chin up in the air) or push down towards my chest (with throat crunched in). I sometimes use a sleeping slant wedge under my upper body but that doesn’t seem to affect how tired I am the next day, so the little bit of gravity assistance for sagging throat doesn’t seem to make a difference. BTW, I’m not overweight. I am 67, though, so I have an aging body and associated muscle slackness in the throat.

It seems to me that I don’t have any option but to move to a full face mask, but I’m posting this with the hope that a more experienced person might have some additional insights.

So, do you have any clues? Any advice? Are there some settings that on my machine that might be responsible for this?

My settings:
Mode: Auto for Her
Pressure Min 5.00cmH2O
Pressure Max 16.00 cmH20
Climate Control Auto
EPR Full Time
EPR level 3 cmH20
Essentials On
Humidifier Status On
Humidity Level 4
Mask Pillows
Ramp 2
Ramp pressure 5.00 cmH20
Ramp Time 45 minutes
Smart Start On
Temperature 27 c
Temperature enable 2

I append my leak data from OCAR for the past few months. The spikes are when I was using worn-out nasal pillows: I didn’t understand when/when to replace the pillows. As you can see, whatever is happening with me is not showing up in these data – at least, not in what I can understand of it. And, of course, the Resmed data are all smiley faces.

I also append a couple of months of pressure data, in case that is useful to anyone looking at this.

I append OSCAR data from a typical night.

[zonker]

Help! I think that lip flutter (while wearing nasal pillow + chin strap) is destroying my sleep -- and I need some advice about what to do about it! I'm hoping that some of you experienced bipap users can give me some advice.

welcome to the zoo!

i use a firm foam cervical collar instead of a chin strap. i use it in conjunction with the JHC method found here-

http://cpaptalk.com/viewtopic/t112758/M ... +breathing

i use a modified version of what jay talks about in the thread, but it's basically the same rig.

scroll down a bit until you see jay talk about scuncis.

good luck!

[Pugsy]

chipmunk cheeks....search the forum for the many past discussions

[albigensian]

Thanks for the advice, folks. I will investigate strange ways of wearing scrunchies and read about chipmunk cheeks (thanks for giving me the right word for a good search). I am very grateful for your generosity in pointing me in the right direction, and I'm happy to accept all such pointings that anyone else would like to offer.

I will post later if (actually, when) I have more questions and data.

It does look as if my guesses about the causes of my poor quality of my sleep are correct, though, as I read about chipmunk cheeks. I'm puffing little bits of air out of my mouth almost constantly, and the sensation/noise are bringing me close to wakefulness and stealing away my ability to sleep deeply. Although they're small, the mouth leaks are also stealing some of what the machine is trying to do for me, apparently, although I don't really understand that yet. I am currently puzzling over Jim Aitchsee's post http://cpaptalk.com/viewtopic/t112758/M ... +breathing but I am intent on figuring it out. He quotes, "When a mouth leak occurs, pressurized air does not reach the lungs and does not contribute to ventilation, thereby rendering the treatment less effective or ineffective." So, maybe that's another reason why I'm still so tired.

Your responses are much appreciated. I am digging into the research and attempting new physical setups because most users on this site seem so determined to avoid full face masks that I'm assuming that I should just not just give up and start trying them out. Or is there a secret community of full-face-mask wearers that is lurking somewhere else, gleefully exchanging tips and wondering why everyone else is talking about their nares?

I am probably engaging in a typical form of magical thinking: that there's some perfect medical device out there that I can buy, put on, and not have to ponder and adjust and study. Sigh. I can see that this will take some study, and I'm grateful to those of you who are sharing what you know.

[Pugsy]

When the mouth leaking/breathing is significant it can obviously have a negative impact on therapy but not all mouth breathing or leaking is that big of a problem.
Some years back I woke up to some mouth breathing one morning and it wasn't very much but since it was time to get up anyway I decided to lay there and continue the mouth breathing so I could see for sure exactly how much it might be affecting my therapy.
So I did about 15 minutes of known mouth breathing and a very gentle mouth breathing...no massive tornado of air going out my mouth but instead just a gentle low level mouth breathing.

I thought that leak graph would show something a lot more impressive than it did.
Here's the leak graph for that night and I circled the known mouth breathing at the end of the night in red.


Obviously I had worse leaks (from whatever source) earlier in the night but the mouth breathing was barely a factor.
These machines can compensate for quite a bit of leak so we don't have to expect a 0.0 leak line to have effective therapy.

Now...that's leak as to how it might affect therapy.....doesn't necessarily mean how it might affect sleep quality itself.
Some people will have their sleep disturbed with just the tiniest of leaks....others might sleep through that proverbial tornado out the mouth leak.
Anything that disturbs our sleep is of course unwanted...even if it isn't bad enough to necessarily impact therapy effectiveness.
Those bigger leaks you see on my leak graph earlier in the night...might have been mouth opening...might have been simply mask movement but I slept through them so I don't care. While they look impressive those larger leaks were still well within the machine's ability to compensate for the larger leaks and even if they had been massive...10 minutes of massive leak isn't the end of the world.

I am probably engaging in a typical form of magical thinking: that there's some perfect medical device out there that I can buy, put on, and not have to ponder and adjust and study. Sigh. I can see that this will take some study,

Nothing is ever perfect or easy....least of all cpap therapy. I have always thought the cpap journey was the hardest part but sometimes just getting good quality sleep is the hardest part. Sometimes it's a bit of trial and error to figure out what works the best for each of us and everything comes with a huge YMMV sticker. I don't worry about leaks unless I remember them waking me up. I learned a long time ago that to try to get a perfect 0.0 leak line involved more sleep disturbances than just letting a few leaks slide might impact my sleep.

Now I never really had the chipmunk cheek issue. I can hardly get air into my mouth without making a concerted effort to relax that valve in my airway that closes the door from the airway to the oral cavity. For me it is reflex that keeps it closed. For others they don't have that reflex engaged or it gets lazy once asleep and relaxes and lets air enter the mouth.
So we tell people to practice keeping their tongue in the roof of their mouths to help keep that valve/back door closed so air doesn't go up the nose, down the airway and prematurely enter the oral cavity to cause chipmunk cheeks. There's a valve back there...it's what prevents air from going out your nose when you blow up a balloon. It's a reflex though and hard to tell a person how to manually control a reflex. I wish I could market it...I could buy a new truck. and only ask for 5 bucks for the trick. Chipmunk cheeks is a huge annoyance for a lot of people.

Get the software so you can see for sure just how much leak might be going on
OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation
Sometimes just the reassurance that while chipmunk cheeks is annoying that it really isn't having that much of a negative impact on therapy itself will allow us to just go back to sleep and not worry so much about it.

I am coming on 12 years now of cpap therapy....some nights are near perfect and some aren't even close ...we don't sleep the same each night for one thing. Some nights we just have crappy sleep for any number of reasons totally unrelated to the airway itself.
Remember cpap only fixes airway issues...it doesn't do a darn thing for crappy sleep caused by something unrelated to the airway.

Sleep is your primary goal....without sleep none of this other stuff really matters much does it?

If it's any consolation...a lot of people eventually learn the reflex trick that shuts that valve down.
It is something that comes with time.
I can yawn, stick out my tongue and blow raspberries or even talk and not have any air enter my mouth while on cpap.
It wasn't always that way...seemed to happen about 6 months into therapy. I am not alone either. Lots of people report this but we can't tell you exactly what we do to accomplish this.

[albigensian]

Thanks, Pugsy.

You might enjoy this story. I started seeing my sleep MD during the pandemic. He's a pulmonologist, board certified in sleep disorders. He didn't order my at-home sleep study: that came from my allergist. So, to be fair, I've never seen the sleep MD in person.

At our second telemedicine meeting, I tried to tell him that I was still very tired during the day. I talked about how (what I was calling) "lip flutters" kept me from falling back to sleep when I awakened in the night.

His response was to launch into a practiced response. "We aren't treating your apnea so that you won't feel tired. We are treating it so that you won't [fill in with possible medical crises -- heart failure, a stroke due to hypertension, etc.]." What an interesting way to evade the complications of adjusting therapy and avoiding complex discussions! Yes, that certainly kept us to our allotted ten minutes. My AHI was low enough to seem like a decent therapeutic outcome, so there was nothing left for him to do but ritually meet with me and bill Medicare. And, if I stopped my therapy because "it wasn't making any difference and it was a lot of trouble and expense," I'd be the one to blame for "non-compliance." A perfect solution! Doctor = a success/patient = a failure. Sigh.

His only attempt at motivation was to tell me (as an almost complete non sequitur) that "lots of women lose weight once they start CPAP therapy." Huh? I hadn't told him that I wanted to lose weight and, as he could see me through the tiny screen, he could have seen that I'm not overweight. I'm sure that he had a vague notion that he wasn't "motivating" me and, without thinking about it too much, tossed out what he thought every woman wanted to hear: that she might magically lose weight.

I will be interested to see if he's as unskilled in his patient interactions when I meet with him F2F, which I have to do in the next month or two.

Thanks again for all that you and the other experienced pappers (is that really the name for this tribe?) do to help so many people.

[Pugsy]

Most doctors don't have a clue about how to actually use a cpap or wear a mask or what to expect or not expect with cpap therapy.
They are numbers driven...not subjective feelings driven.
So unless your doc actually uses cpap...he's not going to be much help other than brag about the "numbers" and if they are below 5 then they are happy no matter what your sleep quality is. They tend to think low numbers guarantee great sleep quality and unfortunately that's not always the case. Actually in truth probably never the case.

Fatigue....lots of stuff can cause fatigue and it isn't always related to airway issues or even sleep quality issues but we do our best to optimize cpap therapy AND sleep quality in an effort to better prevent those fatigue issues whenever we can.

If you are taking any meds (even OTC) you need to dig deep in the potential side effects list to see if there is anything there that might also be a contributing factor in causing fatigue or chances of poor sleep quality.
I have to take a blood pressure pill that can cause fatigue and minor sleep problems...it's something I have to just accept because not treating my blood pressure problem is a bigger problem than the potential side effects.
There's a risk vs reward to everything out there.

CPAP isn't a one size fits all treatment. Way too many variables possible with it and each person just simply has to be more proactive in managing their therapy. We can't rely on the docs....we have to do our own homework. It sucks but we have to do it.
Much like a diabetic has to learn how to manage their own sugar levels.

[albigensian]

This is a follow-up to say that I solved the problem with the "headband" solution. I don't tape my lips shut. I wrap a cotton headband around my mouth and across the back of my head, hold it in place with my chin strap, and go to sleep. Problem solved. It isn't elegant but it works. It is a lot easier than tape.

[zonker]

This is a follow-up to say that I solved the problem with the "headband" solution. I don't tape my lips shut. I wrap a cotton headband around my mouth and across the back of my head, hold it in place with my chin strap, and go to sleep. Problem solved. It isn't elegant but it works. It is a lot easier than tape.

thank you for reporting back. i don't do it quite the way jay describes, either. and it certainly is better in my case than tape. i'm a full bearded fellow.

just some advice-the headband will stretch out on you. but if you put it through a wash and dry cycle, it will snap back a bit. this won't make it last forever, but it does extend the life.

i always have a pack on hand for when they start to fail altogether.

[kteague]

Here's a copy of what I just posted in another thread. Maybe something in here you'll find helpful.

Here's some tips that helped me with air escaping my lips. In the early years I used denture adhesive between my lips, tape on them, a variety of chinstraps - haven't needed anything for years. If you're not a side sleeper, you probably won't find this as helpful.

Think about gravity when you position yourself for sleep.

A firm flat pillow with the face level will stop the jaw from dropping when it relaxes.

Train your tongue to stay suction sealed forward to the roof of the mouth. This one trick changed my mouth breathing experience. If your face is level and the jaw can't drop, the suction should be enough to stay sealed even with relaxation.

Since a tongue relaxed into the airway is a frequent culprit of blockage, again, consider gravity. Side sleeping at the edge of the pillow where it collapses just enough to allow the front of the face to tilt slightly forward will help the tongue relax into the mouth instead of the throat. This will also help keep the seal intact.

Now, if you figure out how to adhere to all this if you are one who changes positions a lot while sleeping, let us know. Best I could do was make the seal effort second nature. I do it at all times, even when awake.

Good luck with things.

[albigensian]

Thanks to all.

I forgot to mention that I have to sleep on my back (due to problems in the joints) and with some elevation on a slant pillow (still struggling with mucus build-up from allergies), so gravity is always trying to drop my jaw and side-sleeping isn't possible. If I could side-sleep, that would be a big help. If I could lie flatter, that would also be helpful. Alas, neither works for my case -- so, I was glad to learn about the headband trick. Tape was too hard on my sensitive skin.

I'm trying to get my tongue trained but, until then, this is a good solution. I hope that this report helps someone else.

I also suspect that this lip flutter/chipmunk cheeks issue is due to an allergy flareup and a buildup of mucus in the back of my throat. The mucus occasionally blocks the smooth flow down the trachea, the air blows into the mouth and, pop!, the chipmunk cheeks pull out and the lips flutter and pop. I'm hoping that, as my allergies subside, the problem will lessen. I believe that it flared up as we went into pollen season down here in Florida. If the problem lessens when pollen season ends and hurricane season begins, I'll make an update to this post.