Stevesleep1 - CPAP Therapy Optimisation...in the UK

[stevesleep1]

Hi everyone, looking for some help optimising my CPAP therapy. I have gone through some changes and tests myself so I will summarise everything here, appreciate any help.

CONTEXT:
- Home sleep test showed no sleep apnea. AHI was around 3.8. Have a severely deviated septum, some slight congestion, and large tonsils. ENT believes I have UARS (although I haven't done a test for this).
- Have always woken up tired, despite how much sleep e.g. 8/9 hours. Sleep hygeine is good already and optimised.
- Now using my own CPAP machine for the first time, it's been about a month.

OSCARS:
- Last 3 OSCAR's are attached. Ignore the first 30min on the oscars, as I'm just falling asleep and sometimes adjusting stuff (e.g. if there's leaks, or events). On 5 August, the large leak events in the middle of the night are just me taking off my mask so I have like a reference of when I woke up, in future I'll just turn off the machine and back on instead maybe, I just wanted something to see where I woke up.

SUMMARY OF CHANGES MADE:
- Initially I started with EPAP/IPAP 5-14, Medium Trigger, and 3.0 pressure support. With this I could not fall asleep.
- Increased pressure support to 4.0, with a "High" trigger. This was better, I could sleep with it a bit, however I had a lot of CA events.
- I changed to "very high" trigger and increased EPAP/IPAP from 5-14 to 7-12. This change removed the CA events fully and started giving me the lowest AHI scores (usually 0 or 1 events every 90min~).

NEW CONSISTENT PROBLEM - Waking up frequently.
I've been testing these settings for a while, they have worked much better for falling asleep okay, feeling comfortable, and quite a low AHI.

The new problem I'm running into is I am consistently waking up every 1.5hr or so (perhaps during end of sleep cycles).

I have also tested just trying to go back to sleep after I wake up, and I can do this, however the sleep is very fragmented doing so. Not ideal. So any OSCAR data you see, is me waking up every 1.5hr basically.

If I do not use my CPAP, I typically sleep perfectly fine, with either 1 or 0 conscious wake ups, for 8-9 hours. Good sleep hygeine. Therefore, it's fine normally, it's just with the CPAP.

THINGS I USE: Dual chinstrap, mouthtape, breathe right nose strip. Nasal pillows airfit P10.

POSSIBLE PROBLEM/SOLUTION (My theories):
I am just guessing but... At the start of my therapy, with the nasal pillows, mouth leaking was an issue and would wake me up. Now I use the chin strap and harder mouthtape. However sometimes I do notice air will start coming out of the sides of the mouth. My tongue might get relaxed at some stage of sleep and air may leak into my mouth, causing me to wake up (maybe). I've maxed out what I can do to prevent this in terms of a chin strap, tongue positioning etc. For this particular problem, a test may be to use a Full Face Mask which might make me not wake up, if some air does leak out the mouth at some point.

The full face mask is an option if I can't solve it via advice/adjusting settings.

However do you have any recommendations? Anymore settings I can play with? How does the OSCAR data look like? Goal is to stop waking up so quickly.

Someone told me my exhalation was double my inhalation and perhaps I'm getting too much CO2 which wakes me up, they said perhaps the very high trigger is the issue or the pressure. Not sure how accurate that is. Will follow the guidance here.

Another potential theory is I believe when I had EPAP/IPAP on 5-14 (versus 7-12) and a "High" trigger. I do believe at times I stayed asleep for longer... The issue was I had tons of events. So maybe there's something there to do with the pressure amounts.

CURRENT GOAL = Not wake up so often with the machine. I get that it perhaps takes time to adjust, but I'm wondering if there's any settings, or anything that MIGHT be waking me up that I can also optimise.

Looking if you recommend any setting changes here to try out. Thank you.

[Pugsy]

Do you take any medications of any kind? Even OTC? If so, what?

Do you have any other physical or mental health condition going on?

[stevesleep1]

No medications. Physical and mental health is in perfect condition. No conditions present. Sleep hygeine good too, no caffeine near bed etc, all of that other stuff dialed in.,

And as evidence, without the mask, I will sleep for 8-9 hours, with 0 or 1 conscious wake ups (but obviously waking up quite tired, hence the need for therapy and possible UARS). Fall asleep perfectly fine, all of this.

It's purely when using this machine (I am still very new to it) with the nasal pillows that there's these frequent wake ups.

So I'm not sure what it is. Maybe my tongue relaxes for example and the air starts going into my mouth and that wakes me up (random guess). Or the settings arent ideal or something. Or nasal pillows aint what I need.

Open to testing.

[robysue1]

The new problem I'm running into is I am consistently waking up every 1.5hr or so (perhaps during end of sleep cycles).

These sound like normal post REM wakes given the spacing of them. It is not uncommon for humans to briefly wake up at the end of each full sleep cycle (i.e. after the REM episode). The idea is that the person wakes up just enough to check out their surroundings and confirm that all is well and that there is no need to be awake and the person immediately falls back asleep. In other words, in a person with good sleep, these post-REM wakes are so short (i.e. less than 5 minutes) that the person does not remember them in the morning.

I have also tested just trying to go back to sleep after I wake up, and I can do this, however the sleep is very fragmented doing so. Not ideal. So any OSCAR data you see, is me waking up every 1.5hr basically.

I know this is going to sound weird and counter-intuitive, but ...

Your main problem is that you are worrying too much about the wakes. And that prolongs the wakes to the point where they are starting to interfere with your subjective quality of life. In other words, you need to focus on allowing yourself to go back to sleep without trying to figure out why you woke up in the first place.

If I do not use my CPAP, I typically sleep perfectly fine, with either 1 or 0 conscious wake ups, for 8-9 hours. Good sleep hygeine. Therefore, it's fine normally, it's just with the CPAP.

Two things:

First: You are still new at CPAPing and hence the body and brain are still learning to cope with the "new normal" so to speak. In other words, when you have a normal post-REM wake, the body and brain immediately notice that there is this thing on your face that is blowing air at your nose AND there is tape on your mouth! So the brain wakes up more fully to figure out just what's going on and it takes it some time to sort out that the thing on your face is just the CPAP mask and that you yourself put the tape on your mouth. Add in the fact that while you are awake you're going to notice any unintentional leaks and so there's also time spent fixing them. By the time all that happens, the normal post-REM wake has now lasted long enough (i.e. more than 4 or 5 minutes) and you're wide awake and it takes a while to get back to sleep. So the prolonged length of the wake makes it seem like you're not sleeping very well.

The only fix for this kind of a problem is time---in time your brain and body will learn what the "new normal" is. And after it does, the post-REM wakes will shorten back in length where you don't consciously remember them anymore and then your sleep will no longer feel fragmented.

Second: Given your diagnostic AHI = 3.8 and the fact that you seem to sleep better without the CPAP, it begs the question: Do you really need CPAP? In other words, do you really have UARS or not? CPAP cannot fix anything other than sleep disordered breathing (OSA and UARS). And that would beg the question: Is there anything else that might explain your waking up tired even after 8-9 hours of sleep?

In other words, if I were in your shoes, I think I would be trying to get insurance to pay for an in-lab sleep test that is set up specifically to test for UARS as well as OSA. It's also possible that your tiredness might be caused by periodic limb movement disorder (PLMD), which is different than restless legs.

[stevesleep1]

Hi Robysue1, thanks for your message.

To answer the "do you need CPAP" question: my best guess after research and my ENT's is that I do have UARS. The reason being is because I've done a few at home sleep study tests (only test for sleep apnea), they show no sleep apnea (<5 AHI). Yet my symptoms match fully to UARS. Also having a severely deviated septum, and large tonsils. PLMD could be a possibility, however I went through a brief period in the past of sleeping with benzodiazepines (from a medical doctor for insomnia, which I solved) (which is a solution for PLMD since it relaxes you), and I was still waking up tired.

I've maximised most other things to deal with the tiredness, sleep hygeine stuff, health, tests. So the UARS is quite likely. With UARS, you can have a low AHI and still have symptoms. And it's to do with waking up tired after sleeping.

In-lab test would be good to get confirmation however I cannot afford this privately, and there's no insurance for this in the UK for my situation, and I can't get it for free either.

And so I figured the next best test would be to try a CPAP machine and see how that goes, as I have tried most other avenues. I've also read up many instances of people feeling a big difference of feeling energised going from AHI's of 4 (where I'm at), and <1, so that's another possibility.

I've also not been using the cpap machine super regularly (like not every night), it's more 3-5/days a week, (while optimising the settings). So perhaps more regular, daily use, and giving it more time would help.

I hear your comment on giving it more time for the brain to cope with it, this is something I can do and will do.

I guess I just wanted to know if there's anything on the OSCAR data, or any settings, or based on my situation, that also COULD cause wake ups (apart from giving it more time), or setting that MAY lower wake ups, that way I could optimise. E.g. pressure support/ epap/ipap changes etc. Because if my ideal settings, would reduce wakes, that would surely only be a beneficial thing.

If there's any tests, changes I can make, while giving the machine more time, that would be good. Do you think there's any?

Or do you believe it's just a case of giving it more time with the machine to cope with the new normal.

Thank you.

[Miss Emerita]

A few thoughts in addition to Robysue1's excellent advice.

Your I:E ratio is normal.

You might be able to speed up the adaptation process by setting your machine up outside your bedroom during the day or evening and using it while you read, watch TV, or use your devices.

Have you discussed other possible causes of your daytime tiredness with your primary care physician? It might be worth seeing whether you can be screened in areas like these: thyroid, testosterone (if you are male), iron, vitamin D, B vitamins, and autoimmune disease, especially in the connective-tissue-disease family. Any chance you have Lyme disease or long Covid?

[robysue1]

OK. There are good reasons why you and your doctor suspect UARS and you can't get an in-lab test for it.

I've also not been using the cpap machine super regularly (like not every night), it's more 3-5/days a week, (while optimising the settings). So perhaps more regular, daily use, and giving it more time would help.

Not using the machine every night makes it very difficult for your brain and body to understand the "new normal" and all the physical sensations that go along with sleeping with the machine. That could very well explain why you remember all the normal post-REM wakes when you are sleeping with the machine: Your body/brain just hasn't fully accepted briefly waking up to a mask on your face, tape on your mouth, and air being blown at your nose. So when you wake up, you wake fully up because the brain can't simply say to itself, "Yeah, nothing is out of the ordinary. Let's get back to sleep" and then actually fall asleep within a minute or so of the wake.

I hear your comment on giving it more time for the brain to cope with it, this is something I can do and will do.

Most people who are not dealing with actual discomfort learn to sleep reasonably well with the mask in about 2 or 3 weeks of using it every night, all night long. So my advice is to make the decision to just use the mask every night for the next two weeks and not worry excessively about the wakes. See if they decrease by the end of a two week period.

I guess I just wanted to know if there's anything on the OSCAR data, or any settings, or based on my situation, that also COULD cause wake ups (apart from giving it more time), or setting that MAY lower wake ups, that way I could optimise. E.g. pressure support/ epap/ipap changes etc. Because if my ideal settings, would reduce wakes, that would surely only be a beneficial thing.

There's nothing in your data that screams, "Here's a problem that must be fixed!"

What I mean by that:

Outside of the beginning of the night when you are still working on getting to sleep, the wave flow doesn't seem to have a whole lot of activity that we see when people are having a whole lot of arousals/wakes---as in waking up several times each hour rather than at points where it's reasonable to assume that the arousal/wake activity is probably post-REM.

With your current settings, your AHI is at or close to 0.0 on both these nights and the CAs that you said had been scored at an early setting have completely disappeared. If you are comfortable breathing at these pressure settings (min EPAP = 7; max IPAP = 12; PS = 4), there's no good reason to change them. You're pretty much running at your minimum setting (EPAP = 7, IPAP = 7+4 = 11) for most of the night, and the small pressure increases to EPAP = 8 and IPAP = 12 appear to be caused by flow limitations and/or events that happen when you may very well be awake or after an arousal. So there is no reason to increase the max IPAP setting in my opinion.

If there's any tests, changes I can make, while giving the machine more time, that would be good. Do you think there's any?

The problem with continuing to make changes every few times you use the machine is that you are not giving your body any time to adjust to the "new normal". You appear to have subjectively fragile sleep when you use the CPAP---as in you remember too many wakes when you are using the CPAP. But every time you make an adjustment, your body is apt to notice that adjustment and then when you do have a normal post-REM wake, the body and brain go: THIS DOESN"T FEEL RIGHT and that wakes you up more fully and causes more trouble with getting back to sleep. So the wake is prolonged enough to interfere with getting a decent night's sleep.

Now having said that, I will point out that you've also written:

Have a severely deviated septum, some slight congestion, and large tonsils

Does the congestion get worse when you lie down? Is the congestion worse when you use the CPAP? Are you using the heated humidifier? If so, what setting are you using? Do you use a heated hose? If so, what setting are you using?

Answers to these questions are important clues about what you might need to change in terms of added humidification to be more comfortable when you wake up in the middle of the night. And the more comfortable you are when you first wake up after a REM period, the more likely you are to be able to just close your eyes and immediately go back to sleep and not remember the wake at all in the morning.

You also write:

So I'm not sure what it is. Maybe my tongue relaxes for example and the air starts going into my mouth and that wakes me up (random guess). Or the settings arent ideal or something. Or nasal pillows aint what I need.

It's possible that this is happening. In other words, if your tongue has relaxed and air is escaping from your mouth, that could cause you to wake up or wake up more fully in a post-REM wake. There does seem to be a bit of possible arousal breathing associated with some of the leaks.

But without being able to zoom in on the data, it's hard to tell whether an arousal led to a leak or a leak led to an arousal.

More questions: Do you ever wake up with a super dry mouth when using CPAP? Do you tend to drool when you sleep (both with and without CPAP)? Does taping your mouth bother you in any way?

Or do you believe it's just a case of giving it more time with the machine to cope with the new normal.

As far as the pressure settings (min EPAP, max IPAP, PS) are concerned, I think its just a matter of using the machine consistently for a long enough period for your body to learn what the new normal feels like.

But depending on your answers to the questions I''ve asked in this post, there may be a few suggestions that could be made in terms of the comfort settings on the heated humidifier that could be played with, along with suggestions about developing a nasal hygiene routine to minimize the congestion you have during the night.


As for mask type, you also write:

THINGS I USE: Dual chinstrap, mouthtape, breathe right nose strip. Nasal pillows airfit P10.

If you are actually comfortable with all this on your face while lying in bed going to sleep at the beginning of the night, then your leak line says to just keep doing what you are doing.

But it begs the question: Is it waking up with dual chinstraps on your chin and your mouth taped that is making your body go from "ho-hum everything seems to be ok, let's get back to sleep" to "WHOA, What is all this crap on my face?" and prolonging the normal post-REM wakes?

So I have to ask: During the day do you mouth breathe? If you do, have you ever tried a full face mask? If so, what happened?

It's also worth asking: What happens to the leak line if you don't use dual chinstraps and tape your mouth? Or are you using all of this out of fear that you might be mouth breathing simply because you know you have a severely deviated septum?

Here's the thing: Even with a severely deviated septum, most people can breathe through their nose just fine most of the time. If you don't mouth breathe during the day, you might very well want to experiment with reducing all the stuff you are using because you want to use a nasal pillows mask.

So the recap of my advice is this:

1) Use the machine every night for at least a 2 or 3 week period.
2) Do not make any more changes to the pressure settings (min EPAP, max IPAP, PS settings) for the next 2 or 3 weeks.
3) Depending on your answers about nasal congestion, you may need to play with the heated humidifier setting and/or the heated hose setting. What kind of changes depends on your answers.
4) Depending on your answers about mouth breathing and your physical comfort while using dual chinstraps and mouth taping, you may want to experiment with using less stuff and/or consider switching to a FFM if you know you are a dedicated mouth breather in the daytime.
5) Change one thing (humidifier/hose settings OR eliminating one chin strap OR eliminating mouth taping OR try a FFM) at a time. Unless there's a clear disaster in terms of your subjective sleep quality, try to keep the change in place for at least 3 days before making another change. That's the only way we can help you sort out which changes lead to better subjective sleep and which changes lead to worse sleep and which changes don't seem to affect the quality of your subjective sleep.