New User - Looking for Feedback!

[random3388]

Hi all,

Thanks in advance to anyone who can take the time to provide any feedback.

New user - Two sleep studies reported RDI (or AHI, can't recall) of 15.3 sleeping on my back, and then 7.5 on my side - side sleeping uncomfortable, and still wake up tired, groggy and unrested (and experience EDS, particularly when driving in the afternoon).

Got my APAP on Jan 9th, and every night had horrendous dry mouth that typically woke me up every 1.5-2 hours - longest I could manage with the machine was 4 hours across the night, until last night. Tried to tweak the humidity but ended up with water in the tube/mask. Am a mouth-breather unfortunately.

Trialled mouth tape last night which worked a treat - no dry mouth, only one wake up, and 7.5 hours with the mask on.

Using a pressure range of 8-20 yielded some decent results (a couple of nights around the 2.0 mark), but still inconsisent. I had a small patch where I felt more energised/positive than usual, off of ~4 hours of APAP sleep... but it didn't last, as my events/hr went back up.

For reference, my 95% pressure ranges from 10.0 to 15.5 (or from 12.7 to 13.8ish, over the last week).

My last four nights:
Usage = 3:00, 3:20, N/A, and 7:32,
Events/hr = 8.3, 4.2, N/A, 3.5


Questions:

1. Most of my CA's are preceded by a large inhale (big spike in flow rate) - is there anything I can do about these? I've read about SWJ though not sure I understand it.

2. Should I be setting a higher minimum? When my minimum was 8.0, the pressure, some nights, would 'approach' it, before spiking back up. My (uneducated) guess is that perhaps a higher minimum could prevent events occuring in the first place...?

3. If I can find a way to tolerate sleeping on my side, should I? Is it logical to think this might mean needing a 'lower pressure'...?

4. Anything else worth considering based on last nights data (attached, hopefully)?


Sorry for the info-bomb - if I've left out anything important please let me know. Worth mentioning this is a DIY project so far - the time between sleep specialist appointments is a killer and I couldn't wait until Feb to get started... been struggling to say the least!

[zonker]

Hi all,

Thanks in advance to anyone who can take the time to provide any feedback.

first of all, thank you so very much for taking the time to read the stickies and present the forum with your oscar charts. this makes things much easier!

Got my APAP on Jan 9th, and every night had horrendous dry mouth...

AND you figured out how to conquer dry mouth. most impressive.

Using a pressure range of 8-20

Questions:

1. Most of my CA's are preceded by a large inhale (big spike in flow rate) - is there anything I can do about these? I've read about SWJ though not sure I understand it.

2. Should I be setting a higher minimum? When my minimum was 8.0, the pressure, some nights, would 'approach' it, before spiking back up. My (uneducated) guess is that perhaps a higher minimum could prevent events occuring in the first place...?

3. If I can find a way to tolerate sleeping on my side, should I? Is it logical to think this might mean needing a 'lower pressure'...?

4. Anything else worth considering based on last nights data (attached, hopefully)?

1. most of us have centrals when we start out. your brain is telling you to hold your breath as you turn over. after awhile, the brain gets used to it and centrals don't show up
2. yes. see that pressure graph? it climbs up higher and never really goes back down. the minimum pressure does the bulk of the work. so help it out by raising it. i'd say 10 but other, wiser, heads might say differently.
3. yes
4. and i'll let those aforementioned wiser heads speak up on this.

btw, all of the seasoned users on the forum did this diy, so you're in good hands here.

good luck!

[Pugsy]

Are you waking up a lot during the night for various reasons?

1. Most of my CA's are preceded by a large inhale (big spike in flow rate) - is there anything I can do about these? I've read about SWJ though not sure I understand it.

We don't take big gulps of air when we are asleep so if you see a big gulp just prior to a flagged CA/central then that means you weren't asleep when that central got flagged. If you aren't asleep they don't count. Anything flagged when we aren't asleep doesn't count and we have to mentally ignore ...toss it out the window.
These machines can't tell sleep status at all. They only measure air flow (breathing) and our awake breathing can be quite irregular when compared to asleep breathing. These measure the irregularity and if it lasts 10 seconds it gets some sort of flag. We call those SWJ/sleep wake junk for lack of anything else to call it.

When we see a lot of SWJ flags then we know the user didn't sleep soundly because if the sleep didn't have a lot of arousals to earn the SWJ status. To fix the problem of SWJ we have to fix the cause of the poor sleep and sometimes that's easier said than done...especially for new to cpap people because just having all this "stuff" on us and attached to use messes with sleep until the brain gets used to having all that "stuff" hanging around every night.

The bulk of your AHI is the CA/Central index and more pressure won't fix even asleep centrals much less arousal/awake SWJ centrals. So if we remove the Central index (2.26) from the AHI of 3.58 that leaves us with a less than 0.0 obstructive (OAs & hyponeas) index and it's not worth trying to kill them. Not needed and I would bet my last dollar some of that might be SWJ.

What seems to be driving the pressure increases are most likely the Flow Limitations seen. They aren't horribly horrible and I have seen much worse but it is enough the machine is playing around with the pressures in an effort to reduce the flow limitations..

Couple of ways to reduce FLs
1...more baseline pressure or minimum
2...add in EPR because the pressure support lets there be 2 distinct pressures an EPAP/Exhale and IPAP/Inhale which seems to help a lot of people with the flow limitation reduction. This is my preferred option to try at first anyway.
It works a good bit of the time and it also can be more comfortable.

I wouldn't go increasing the minimum because it won't help reduce the AHI significantly because the bulk of the AHI is central or SWJ which more pressure won't help. You gotta fix the bad sleep first.

The machine is ignoring the centrals because it knows it can't do anything about them anyway.
Instead it looks like the FLs are the driving force behind the pressure changes and you aren't having enough OAs or hyponeas to cause all that activity.

I like to make only ONE change at a time because if you make more than one change then if something really good (or really bad) happens then you don't know which change to give the credit or blame.

So I would suggest turning EPR ON (FULL TIME) and set it to 2 and see how things go.
Don't go trying to change the minimum of 8 at this time. Maybe later but not just yet.

[Pugsy]

One question...are you experiencing any nasal congestion when using the cpap?

If you are....
Sometimes the machine can confuse nasal congestion and flow limitations. Remember it can only measure air flow but it can't know where that reduction in air low is coming from...nasal congestion can't be reduced with more pressure but sometimes the nasal congestion is being seen by the machine as flow limitation.
Gotta fix nasal congestion by the other traditional means....decongestants, sprays, rinses or whatever works.

[random3388]

Hi all,

Thanks in advance to anyone who can take the time to provide any feedback.

first of all, thank you so very much for taking the time to read the stickies and present the forum with your oscar charts. this makes things much easier!

Got my APAP on Jan 9th, and every night had horrendous dry mouth...

AND you figured out how to conquer dry mouth. most impressive.

Using a pressure range of 8-20

Questions:

1. Most of my CA's are preceded by a large inhale (big spike in flow rate) - is there anything I can do about these? I've read about SWJ though not sure I understand it.

2. Should I be setting a higher minimum? When my minimum was 8.0, the pressure, some nights, would 'approach' it, before spiking back up. My (uneducated) guess is that perhaps a higher minimum could prevent events occuring in the first place...?

3. If I can find a way to tolerate sleeping on my side, should I? Is it logical to think this might mean needing a 'lower pressure'...?

4. Anything else worth considering based on last nights data (attached, hopefully)?

1. most of us have centrals when we start out. your brain is telling you to hold your breath as you turn over. after awhile, the brain gets used to it and centrals don't show up
2. yes. see that pressure graph? it climbs up higher and never really goes back down. the minimum pressure does the bulk of the work. so help it out by raising it. i'd say 10 but other, wiser, heads might say differently.
3. yes
4. and i'll let those aforementioned wiser heads speak up on this.

btw, all of the seasoned users on the forum did this diy, so you're in good hands here.

good luck!

Thank you for the response - I am happy to join the zoo if it means becoming well-rested...

I am very happy with my dry mouth win, after ~2 weeks of being limited to a max of 4 hours usage per night - it was a large stumbling block!

1. Fair enough - not sure how much I turnover, though I do notice as I'm trying to getting to sleep I do forget to breathe occasionally (I only realise due to the 'pulses' of air. that get delivered.. can't remember what Resmed call it). Hoping they reduce over time!

2. I'll tweak it up if that's the overall consensus of the hive mind!

3. Roger that - will try to work on that. Not ideal with full face mask, but doable. I'll investigate nasal pillows at some point... once I've given this a good go.

4. No worries.

Thanks again!

[random3388]

Are you waking up a lot during the night for various reasons?

Thanks so much for taking the time to help me out!

Not that I am consciously aware of. I can recall one time last night where I clearly woke up, but got back to sleep reasonably soon after.

1. Most of my CA's are preceded by a large inhale (big spike in flow rate) - is there anything I can do about these? I've read about SWJ though not sure I understand it.

We don't take big gulps of air when we are asleep so if you see a big gulp just prior to a flagged CA/central then that means you weren't asleep when that central got flagged. If you aren't asleep they don't count. Anything flagged when we aren't asleep doesn't count and we have to mentally ignore ...toss it out the window.
These machines can't tell sleep status at all. They only measure air flow (breathing) and our awake breathing can be quite irregular when compared to asleep breathing. These measure the irregularity and if it lasts 10 seconds it gets some sort of flag. We call those SWJ/sleep wake junk for lack of anything else to call it.

Hmm okay - I'm a bit thrown by these then, as I don't *think* I'm awake when they occur (here's an example):



Most of the CA's follow a similar pattern - fairly rhythmic breathing in the leadup, sudden spike in flow rate, then... flat line. Some also have H's/OA's around the same time, which I am thinking could suggest I am indeed asleep...?

Unless I'm waking for a few seconds, but remain unaware.

When we see a lot of SWJ flags then we know the user didn't sleep soundly because if the sleep didn't have a lot of arousals to earn the SWJ status. To fix the problem of SWJ we have to fix the cause of the poor sleep and sometimes that's easier said than done...especially for new to cpap people because just having all this "stuff" on us and attached to use messes with sleep until the brain gets used to having all that "stuff" hanging around every night.

Noted.

The bulk of your AHI is the CA/Central index and more pressure won't fix even asleep centrals much less arousal/awake SWJ centrals. So if we remove the Central index (2.26) from the AHI of 3.58 that leaves us with a less than 0.0 obstructive (OAs & hyponeas) index and it's not worth trying to kill them. Not needed and I would bet my last dollar some of that might be SWJ.

I should mention that, based on the limited data I have, depending on the night the CA can make up anywhere from 25 to 70% of my AHI - need more full nights of data!

What seems to be driving the pressure increases are most likely the Flow Limitations seen. They aren't horribly horrible and I have seen much worse but it is enough the machine is playing around with the pressures in an effort to reduce the flow limitations..

Couple of ways to reduce FLs
1...more baseline pressure or minimum
2...add in EPR because the pressure support lets there be 2 distinct pressures an EPAP/Exhale and IPAP/Inhale which seems to help a lot of people with the flow limitation reduction. This is my preferred option to try at first anyway.
It works a good bit of the time and it also can be more comfortable.

I wouldn't go increasing the minimum because it won't help reduce the AHI significantly because the bulk of the AHI is central or SWJ which more pressure won't help. You gotta fix the bad sleep first.

The machine is ignoring the centrals because it knows it can't do anything about them anyway.
Instead it looks like the FLs are the driving force behind the pressure changes and you aren't having enough OAs or hyponeas to cause all that activity.

I like to make only ONE change at a time because if you make more than one change then if something really good (or really bad) happens then you don't know which change to give the credit or blame.

So I would suggest turning EPR ON (FULL TIME) and set it to 2 and see how things go.
Don't go trying to change the minimum of 8 at this time. Maybe later but not just yet.

If EPR can help with the flow limitation i'll definitely give it a go for a few nights.

I'll leave the minimum at 9 for now, but will try 10 once I've given the EPR a go (as mentioned above during this response, sometimes my H/OA make up the bulk of events, rather than CA, so I am thinking more pressure might help).


Regarding nasal congestion - I don't think so? Not waking up with a blocked nose or anything, though I think my nose-breathing has always been a little restricted (and the slightest hint of a cold destroys me).

Saw an ENT doc for a 'slightly' deviated septum about 7 years ago, not sure if this matters. He said he didn't feel it was bad enough to consider surgery... though in light of my SA diagnosis I plan on going back at some point and getting everything checked.

[random3388]

Last night - only change was EPR switched to 1, full time. Might give it another night before trying 2.

Forgot that I did try EPR (3) on the very first night (Jan 9th), but my CA's were 9.25 (with an AHI of 13.25), so I switched it off completely, I think I read something about a 'possible' link between EPR and CA's - is this concerning or just a matter of adjusting to it?

[Pugsy]

Forgot that I did try EPR (3) on the very first night (Jan 9th), but my CA's were 9.25 (with an AHI of 13.25), so I switched it off completely, I think I read something about a 'possible' link between EPR and CA's - is this concerning or just a matter of adjusting to it?

There's more than a "possible" link between bilevel pressures, which using EPR creates, it's proven.

Bilevel pressures can be trigger for the unstable breathing that ends up causing central apneas in some people...actually a VERY small percentage of people will have this happen to them....extremely small % compared to those millions that use all sorts of EPR or bilevel pressures.

Your first night with AHI of 13 and mainly centrals....I bet 95% of those flagged were SWJ arousal/awake flagged events because I bet you didn't fall asleep easily nor did you stay sound asleep all night either. Shrug your shoulders and move on.
EPR didn't cause those centrals......not sleeping caused them.

And to add to your confusion about central apnea causes....you know what the normal first step when someone has too many real asleep centrals and turning EPR off or down doesn't help? People get prescribed a bilevel machine

[random3388]

Forgot that I did try EPR (3) on the very first night (Jan 9th), but my CA's were 9.25 (with an AHI of 13.25), so I switched it off completely, I think I read something about a 'possible' link between EPR and CA's - is this concerning or just a matter of adjusting to it?

There's more than a "possible" link between bilevel pressures, which using EPR creates, it's proven.

Bilevel pressures can be trigger for the unstable breathing that ends up causing central apneas in some people...actually a VERY small percentage of people will have this happen to them....extremely small % compared to those millions that use all sorts of EPR or bilevel pressures.

Your first night with AHI of 13 and mainly centrals....I bet 95% of those flagged were SWJ arousal/awake flagged events because I bet you didn't fall asleep easily nor did you stay sound asleep all night either. Shrug your shoulders and move on.
EPR didn't cause those centrals......not sleeping caused them.

And to add to your confusion about central apnea causes....you know what the normal first step when someone has too many real asleep centrals and turning EPR off or down doesn't help? People get prescribed a bilevel machine

Haha, seems counter-intuitive

Okay, noted - I always think I'm asleep for most of the night - are you saying you don't think I am actually asleep, or in other words, that I am not consciously aware that I am awake?


Here's an exerpt from that first night:



There's an OA right in the middle of all the CA's - could this occur if I was actually awake, or is this just an issue with inaccurate flagging?

Also, is there any reasonable way of determining whether any of the CA's are legitimate?

[Pugsy]

are you saying you don't think I am actually asleep, or in other words, that I am not consciously aware that I am awake?

That is exactly what I am saying. You may not remember being awake but you weren't sound asleep.
We may or may not remember arousals/awakenings but they happen. I think chances of remembering depend on just how long it takes a person to get back to sleep.

There's an OA right in the middle of all the CA's - could this occur if I was actually awake, or is this just an issue with inaccurate flagging?

You weren't sound asleep when any of those events got flagged.
It's not so much as inaccurate flagging because technically they are either reductions in air flow or cessation of breathing but the CAUSE is something beyond the machine's ability to factor in. Remember the machine can't tell if you are asleep or awake. It only measures air flow. We pause our breathing all the time while awake and never notice. We also breathe more shallow at times and don't notice....but the machine notices.

Also, is there any reasonable way of determining whether any of the CA's are legitimate?

Sure...you learn to evaluate the flow rate and spot awake/arousal breathing and then you know to discount.

Read this thread. I gave this guy a crash course.
viewtopic/t187767/New-to-CPAP-need-help ... tings.html

And look at this snippet. LOTS of centrals but I wasn't ever asleep. The insomnia monster came for a visit and stayed until after that second cluster of centrals ended. I know with absolute certainty I wasn't asleep....and hadn't fallen asleep either even briefly.
I have an example somewhere, but can't find it at the moment, of the machine flagging OAs as well but I wasn't asleep.

[random3388]

are you saying you don't think I am actually asleep, or in other words, that I am not consciously aware that I am awake?

That is exactly what I am saying. You may not remember being awake but you weren't sound asleep.
We may or may not remember arousals/awakenings but they happen. I think chances of remembering depend on just how long it takes a person to get back to sleep.

There's an OA right in the middle of all the CA's - could this occur if I was actually awake, or is this just an issue with inaccurate flagging?

You weren't sound asleep when any of those events got flagged.
It's not so much as inaccurate flagging because technically they are either reductions in air flow or cessation of breathing but the CAUSE is something beyond the machine's ability to factor in. Remember the machine can't tell if you are asleep or awake. It only measures air flow. We pause our breathing all the time while awake and never notice. We also breathe more shallow at times and don't notice....but the machine notices.

Also, is there any reasonable way of determining whether any of the CA's are legitimate?

Sure...you learn to evaluate the flow rate and spot awake/arousal breathing and then you know to discount.

Read this thread. I gave this guy a crash course.
viewtopic/t187767/New-to-CPAP-need-help ... tings.html

And look at this snippet. LOTS of centrals but I wasn't ever asleep. The insomnia monster came for a visit and stayed until after that second cluster of centrals ended. I know with absolute certainty I wasn't asleep....and hadn't fallen asleep either even briefly.
I have an example somewhere, but can't find it at the moment, of the machine flagging OAs as well but I wasn't asleep.

Ahhh, that's helpful - it looks like last night basically ALL of my flagged CA's were preceded by either some form of arousal/deep breath, or in some cases, a flagged H.

So, in my case, it's typically an arousal leading to a CA, which aren't true CA's, as the arousal is causing me to 'wake' slightly.

Thanks!

I'll have another go at this sleep thing tonight...

[Pugsy]

2 Main types of arousals

1. Spontaneous and there is no known cause...common, numerous and a real bitch to fix because we often don't know the why.
Gotta figure out the cause to be able to fix it.

2. Airway related arousal...RERA Respiratory Event Related Arousal... this is where the things like Obstructive Sleep Apnea or Central Sleep Apnea or Hyponeas or UARs are factors in the cause of the arousal.

[random3388]

2 Main types of arousals

1. Spontaneous and there is no known cause...common, numerous and a real bitch to fix because we often don't know the why.
Gotta figure out the cause to be able to fix it.

2. Airway related arousal...RERA Respiratory Event Related Arousal... this is where the things like Obstructive Sleep Apnea or Central Sleep Apnea or Hyponeas or UARs are factors in the cause of the arousal.

Hmm okay, can't do much about the spontaneous, and hopefully my sleep studies would've picked up on any UARS (not sure if they check for it by default).

I opted to switch to suggestion #1, more baseline pressure - just a hunch, and I just find the EPR unsettling.

EPR back off, and minimum raised from 9.0 to 10.0:



Pretty successful - ignoring the cluster during the first 30 minutes (where I was definitely still very awake), I managed to go 5.5 hours with only 6 events, 4 of which were CA's preceded by an arousal - still woke up tired, not feeling any better, though understand it can take time.

Waking up with red marks either side of my nose, and on the bridge of my nose - which seem to be sticking around throughout the day. Might loosen the mask, though then I worry about leaks...

I do have nasal pillows to trial, but I don't want to rock the boat if I'm finally getting my AHI down with the full face mask. Hmmm... too many bloody variables.

[Pugsy]

I managed to go 5.5 hours with only 6 events, 4 of which were CA's preceded by an arousal - still woke up tired, not feeling any better, though understand it can take time.

Takes more time AND it takes more sleep (real sleep) than 5.5 hours.