zonker therapy thread redux: in the arms of morpheus

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Re: zonker therapy thread redux: osa and rem

Post by Pugsy » Wed May 04, 2022 12:53 pm

zonker wrote:
Wed May 04, 2022 11:50 am
what should my settings be to help alleviate my sleep apnea?
Well.....it all depends on your definition of "alleviate my sleep apnea".
And more importantly...sleep quality itself.
You tend to want near perfection in both categories...really, really low AHI and lots and lots of sleep....and at the same time not give you rain out or dry mouth. Is that just about it?

You were worried about random clusters occurring most likely after first REM cycle. So we started increasing the pressure and to be honest we didn't know if that cluster was a real asleep cluster or an arousal/awake cluster.

Look on your OSCAR statistics down at the bottom for what settings you have tried and when.

I just cleaned out my sent box 3 days ago....so I no longer have the PM I sent you. Sorry. I don't remember the specifics.
I am thinking it was 10 epap minimum and PS of 4 and max IPAP 25.

One thing I need to mention is that you really aren't/weren't giving the settings much time before making another change.
That patience pill is huge and hard to swallow.
Some years ago when I first started out using bilevel I had no idea what to start with so I picked a setting and got "okay" results...AHI between 2.5 and 4.5 for the most part but not consistently as some nights were a lot higher.
So I figured that was as good as any place to start. Made an agreement with myself to not change anything for 6 weeks.
That was really hard to do because some nights the results weren't so great and I seemed to have a lot of them at first.

At the 6 week mark I did an evaluation...I never changed anything during that time and I was pleasantly surprised to see the AHI had reduced to where it was consistently between 1.0 and 1.5 and often less than 1.0.
I was sleeping about 45 minutes longer as well.

There is some truth to that "give it time" thing. But I will be the first to admit....it's hard to do.

I really wish you could get to where you can evaluate asleep vs awake/arousal flagged events so we would know if we need more pressure or just need more/better sleep. To keep increasing the pressure trying to kill events that aren't real asleep events is never going to work out well. By your own admission you know your sleep quality needs improvement and you want to fix it with tweaks to the machine but we can't fix bad sleep with the machine unless the bad sleep is from the airway issue.

I have a couple of examples from last night to share with you....I had major trouble falling asleep last night and then I woke up and wanted to go back to sleep but couldn't.
Both these examples are awake/arousal related. I know for a solid fact I was awake during both of the segments.

When I went through and evaluated each flagged event....only one out of the entire night was a real asleep event.

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Re: zonker therapy thread redux: osa and rem

Post by zonker » Wed May 04, 2022 7:12 pm

Pugsy wrote:
Wed May 04, 2022 12:53 pm
zonker wrote:
Wed May 04, 2022 11:50 am
what should my settings be to help alleviate my sleep apnea?
Well.....it all depends on your definition of "alleviate my sleep apnea".
And more importantly...sleep quality itself.
yes, i should have been a LOT more clear in my hasty post. i'm a bit short on sleep, so won't go into all of it. i SHOULD have said "treat" not alleviate. this is what i get for using a ten dollar word when a ten cent word would've been better. :lol:

let me try to state it this way, maybe "more better", who knows?

i am no longer concerned about ahi. it would be terrific to have a low ahi if for nothing more than bragging rights. but it no longer has the luster it once had. hell, i just had three nights in a row with an ahi of 0. but on each of those nights, i had numerous wakeups.

last night, i had a bout of insomnia the likes of which i've never seen. this after waking up with dry mouth.

so i'm not exactly clearheaded right now. very tired. i'll come back in after tonight and address all you've said.
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Re: zonker therapy thread redux: osa and rem

Post by zonker » Thu May 05, 2022 12:15 pm

Pugsy wrote:
Wed May 04, 2022 12:53 pm

You tend to want near perfection in both categories...really, really low AHI and lots and lots of sleep....and at the same time not give you rain out or dry mouth. Is that just about it?

You were worried about random clusters occurring most likely after first REM cycle. So we started increasing the pressure and to be honest we didn't know if that cluster was a real asleep cluster or an arousal/awake cluster.

Look on your OSCAR statistics down at the bottom for what settings you have tried and when.

I just cleaned out my sent box 3 days ago....so I no longer have the PM I sent you. Sorry. I don't remember the specifics.
I am thinking it was 10 epap minimum and PS of 4 and max IPAP 25.
yes, to that first statement. as low as is possible without triggering discomfort. that discomfort in the form of rainout or dry mouth. i will gladly trade higher ahi for comfort at this point. it's finally become painfully clear that the lower ahi means squat if i'm not sleeping.

i can access the statistics but not as you mentioned. probably because i'm on an earlier version of oscar. the problem is, there have been many changes since march 10. i seem to have no way to cut and paste these statistics here. if you really want to see them, i can type them in.

you didn't give me settings via pm, sorry you went through that. the pm was me asking you what questions i should ask of the seller before i bought it. the settings were here in this thread-
Pugsy wrote:
Wed May 04, 2022 12:53 pm
So what you do is translate the Autoset settings into bilevel settings.

With the minimum set to 18.4 and using EPR set to 2 that means during inhale (IPAP) you are getting 18.4 cm and on exhale (EPAP) you are dropping to 16.4 cm because of the 2 cm drop that EPR brings.

You won't have an EPR setting on the VAuto but you will have PS (pressure support) which will give you the difference between inhale and exhale that EPR does but in a backwards way of thinking.
EPR comes off inhale.
PS gets added to exhale.

So you start with the exhale that you get on the AutoSet which is 16.4 and you add PS to it to get to what your inhale was which was 18.4.

So.... Minimum EPAP setting on the VAuto needs to be 16.4
PS needs to be 2 cm
and that will give you the 18.4 inhale and 16.4 exhale you got on the AutoSet.
Should feel pretty much like what you feel on the AutoSet.

The maximum IPAP setting....might as well go 25 and see what happens. If/when the machine wants to increase the pressure it will always be with the 2 cm difference.

So in Auto bilevel mode these are the main settings
Minimum EPAP
PS
Maximum IPAP

There are other settings available but I always suggest starting those out with the factory defaults because for most people those settings will work just fine. They are mainly comfort settings anyway.
Don't forget to go to the apneaboard and get the clinical/provider manual for your new machine.
I usually suggest people just go ahead and do the restore to factory defaults and erase any prior user data from the machine first (along with erasing the SD card if you are getting one)...and then start fresh with the settings.
Don't forget to change the clock while you are in there if there is a time difference.

Should you have a problem with the timing of inhale/exhale with the factory defaults then we go ahead changing those settings with little tweaks to match your own respiration pattern. I was happy with the factory defaults...Palerider ended up doing a little tweaking on his VAuto to match his respirations. He is better suited to offer ideas on what to change or how much than I am.
Start with the factory defaults though....there's a strong probability they will work just fine.

Sometimes it's hard to wrap your head around all this stuff but once you get it then it is a piece of cake.
You just think about what is happening on the AutoSet and match it to what you will get with the VAuto settings.
One thing I need to mention is that you really aren't/weren't giving the settings much time before making another change.
That patience pill is huge and hard to swallow.
patience? let me see if i can speak to that. a glance to my avatar will show i've been at this for seven years. i started a few weeks before i joined, i think. i could see almost at once that my sleep doc wasn't cutting it for me. so came here for some much valued info. so i think that i've showed some patience in trying to get my sleep apnea treated.

patience? when i found that aerophagia was swelling my belly to a vast and hard stone, i went about conquering it by going back to settings where i didn't have aerophagia and slowly increased my min pressure until i could quite handily accept higher pressure, which at the time i thought would improve my sleep. this was on my auto machine, of course. that took 4-6 weeks iirc. so i think that shows some patience too.

patience?this is the fourth machine i've been on. each change has brought a bit of improvement up to now. but even the slightest bit of improvement seems to have eluded me in the two months i've been on bilevel.

maybe i'm confusing jackass stubbornness with patience. i don't know. but when i saw the results of pressure change last week, what with some better sleep and no discomfort, i "rushed" ahead and moved that min ipa from 12.4 to 13. this was consistent with changes i'd made last week, that is i had moved my min up .6 then as well. that was when i woke up with dry mouth. i set the machine back down to min ipap of 12.4. following day(yesterday) i decided, arbitrarily, to set min ipap to 11.6. sleep was much improved. no dry mouth. no rainout. just a slight bit of congestion, but nothing to fuss over. ahi 1.24. tolerable. my thinking is what you and granny said about higher pressure causing that interference with the saliva glands, unless otherwise advised by you or anyone else, i feel i should stay on these settings.

oh and i don't think there is any way in hell i'm going to go six weeks of dry mouth to see if things improve. aerophagia is one thing, dry mouth another. wish i had your patience, though.



I really wish you could get to where you can evaluate asleep vs awake/arousal flagged events so we would know if we need more pressure or just need more/better sleep. To keep increasing the pressure trying to kill events that aren't real asleep events is never going to work out well. By your own admission you know your sleep quality needs improvement and you want to fix it with tweaks to the machine but we can't fix bad sleep with the machine unless the bad sleep is from the airway issue.


heh. i am barely a highschool graduate. learning things don't come so easy to me. but it seems to me that, just by what your saying, the pressure increase isn't working. so let's not do anymore of that, shall we? er,i?

i take it from what you're saying overall that there aren't any bilevel settings left to explore that will help me? or am i reading what you are saying incorrectly?
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Re: zonker therapy thread redux: osa and rem

Post by Pugsy » Thu May 05, 2022 12:43 pm

zonker wrote:
Thu May 05, 2022 12:15 pm
oh and i don't think there is any way in hell i'm going to go six weeks of dry mouth to see if things improve. aerophagia is one thing, dry mouth another. wish i had your patience, though.
Not asking you to go 6 weeks without changing something. My point was that with no changes the AHI dropped dramatically.
I had seen a lot of ups and downs with the AHI during those 6 weeks but there was a very gentle and slow trend downwards.
I also didn't have any of the problems you had with the settings...no aerophagia, no dry mouth, no nothing that would make me have a need to change anything.

I also wouldn't expect you to use ANY setting that seemed to promote either aerophagia monster returning or dry mouth worsening or anything that you perceive to be a negative to your overall sleep quality as well as how you feel each day.
If any setting change seems to make anything in your life worse....back up and just don't do it.

I think we need to target your overall sleep quality if we can. Don't worry about not understanding the difference between asleep and awake events right now. Hell...it took me 2 years of putting those little SOBs under the microscope before I felt comfortable with my evaluations AND I am smart enough to know that I probably don't always get it right.
Some of those flagged events are just to plain "iffy" to know for sure.

Later when I have some time I will send you some instructions on how to get me a copy of that SD card so I can use my OSCAR software and I will take my time and go through the flow rate and see what the overall trend might be. Short on time right now so no sense in your doing it right now and you made a change back to 11.6 EPAP...and I would want to see more nights at that setting again...along with subjective reports on how you feel in general in terms of what you are wanting to get rid of.
We can talk about that later. Maybe the first of next week or mid week we can do that.
Between now and then do keep a little log of your overall symptoms or feelings. Don't rely on memory.
Or just send me a PM each morning with your thoughts on how things went the night before. That could be your log.

Things to include....overall impression of sleep quality...like how many times do you think you woke up?
Any problems with rain out or hose temps or general comfort or dry mouth....that sort of thing. It should be fresh in your mind the morning after but it won't be fresh in your mind in 3 days. :lol:

You have discovered that AHI of 0.0 doesn't mean squat if we don't feel those nice low numbers.
That's one reason I take any AHI with a grain of salt. Been there and done that myself.
We've had late night thunderstorms 2 nights in a row now. I have one dog really scared of thunder and 2 others that want to bark their annoyance at the noise with every clap of thunder. My butt is really dragging what with 2 nights in a row of shorter hours of sleep than my body needs. AHI is great...less than 0.5 I think but I sure don't feel nearly as good as I would hope.

I wish it were so easy to make a little adjustment with the machine and make all our subjective complaints go away but unfortunately it isn't that easy.

Don't be disheartened....just understand that fixing subjective problems is very difficult because we don't always know exactly what is causing the problem and sometimes we just don't have anyway to know for sure.
The patience pill notation....that's for dealing with this new problem...it's not going to be an easy fix because we don't know exactly what the exact cause is and you know what I always say...we have have to first identify the cause of the problem to be able to fix it.

Like your dry mouth issues...why now and not before when you were using much more pressure??? What changed?
That sort of thing. Why is it a worse problem now? I don't know the answer to that question so coming up with a fix is kinda hard. So we keep throwing crap at the wall and hope something sticks in an effort to figure it out.
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Re: zonker therapy thread redux: osa and rem

Post by zonker » Thu May 05, 2022 5:51 pm

Pugsy wrote:
Thu May 05, 2022 12:43 pm

I think we need to target your overall sleep quality if we can.
Image

thank you again for your kindness and response.

it's a bit of a stressful time here at the zonker mansion too, so will respond more in full later.
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Re: zonker therapy thread redux: osa and rem

Post by zonker » Tue May 10, 2022 11:03 am

Pugsy wrote:
Thu May 05, 2022 12:43 pm

Like your dry mouth issues...why now and not before when you were using much more pressure??? What changed?
That sort of thing. Why is it a worse problem now? I don't know the answer to that question so coming up with a fix is kinda hard. So we keep throwing crap at the wall and hope something sticks in an effort to figure it out.
<sigh> i feel kinda stoopid but found out about what was causing dry mouth.

it.was.the.firm.foam.cervical.collar.

as it was past time to change out to a new collar, i did so last night. had no dry mouth issues in the middle of the night! and that was the only change i made. huzzah!

to expand and expound, i had purchased this particular collar at a different supplier, as amazon wasn't stocking when i went to order. this was the coreline brand, which i've been using for years. and it's a 4" collar, which i find works best for me. in fact, i'd recommended it to forum friend jlfinkels. more on this later.

but it was more than the fact that it was near it's end-of-life cycle. it was the SIZE. amazon doesn't offer the option(or else i never paid attention)of ordering the collar in different circumferences. the site i ordered from DID. i chose large, not knowing it was the circumference that would make a differences.

when i started using it, i just tightened it up extra snug. i didn't really notice that it was looser than what i'd had before. didn't notice it until last night. boy, what a difference. i take it that it WAS causing i tiny bit of mouth air leak and thus the dry mouth. or i hope that's what it was and is corrected now.

i mentioned jlfinkel above. he had ordered the 4" coreline from amazon before they ran out. it didn't work for him. he tried a smaller one which did the trick. he was kind enough to give me his 4" collar! so it really came in to save the day.

reckon i best get onto ordering my next collar and make sure it's the right size. if i have to use my alternate site, i believe i'll try the medium.
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Re: zonker therapy thread redux: osa and rem

Post by Pugsy » Tue May 10, 2022 11:07 am

Don't beat yourself up too much. Sometimes the obvious isn't always so obvious and you just did what everyone tends to do...try to fix a problem by changing various settings on the machine. Thinking the machine is a magic wand of settings.
Sometimes it is but most of the time it isn't what we want it to be. Wish it were that easy.
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Re: zonker therapy thread redux: osa and rem

Post by zonker » Tue May 10, 2022 5:24 pm

Pugsy wrote:
Tue May 10, 2022 11:07 am
Don't beat yourself up too much. Sometimes the obvious isn't always so obvious and you just did what everyone tends to do...try to fix a problem by changing various settings on the machine. Thinking the machine is a magic wand of settings.
Sometimes it is but most of the time it isn't what we want it to be. Wish it were that easy.
heh. yeah, i was very happy to find the solution to the dry mouth/rainout cycle. what i'm not thrilled about is-

Image

i felt only mildly groggy and foggy on wake up this morning. but about 45 minutes ago, i started yawning hugely and feeling sleepy.

i should really sleep well tonight if my past experience is anything to go on.
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Re: zonker therapy thread redux: osa and rem

Post by Pugsy » Tue May 10, 2022 6:24 pm

Well that certainly is ugly. I wonder how much position might be impacting things. I know you are very likely having other REM stages and nothing exciting is happening so what makes this time frame so special???
But then I had the same thing and had it even when I built a wall and it was impossible for me to get off my side and onto my back.

I wonder if now that the other problems have been solved if you could tolerate a little increase in EPAP and see if the cluster can be broken up and not have other ugly symptoms return. Maybe 12.0 EPAP.
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Re: zonker therapy thread redux: osa and rem

Post by zonker » Tue May 10, 2022 8:18 pm

Pugsy wrote:
Tue May 10, 2022 6:24 pm
Maybe 12.0 EPAP.
roger that. setting epap to 12.0 now.
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Re: zonker therapy thread redux: livin' the dream

Post by zonker » Mon May 16, 2022 5:36 pm

submitted for your approval-

Image

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Image

Image

Image

Image

so, let's get down to it. as you can see, the pattern looks great as far as ahi goes. as far as SLEEP goes....hey, that looks pretty good, too.

on the night of 1.68, my notes tell me i slept until 5:30! (an aside here: when i say i slept or i slept through until a time, i don't want anyone to think that i was passed out, blacked out with no dream sleep. i'm aware that i woke up each of these nights. no, what i mean is that i didn't wake up alert and look at what time it was then take five minutes to go back to sleep. i just mean i was vaguely aware of turning over and falling back to sleep.)

that 5:30 time is key. it means i was asleep for six hours, which is a newer experience for me. and i welcome it!

the 1.04. again, slept til 5! i was awake more thoroughly twice that night, but had dropped my phone and didn't bother to check the time.

the ahi of zero. as you can see , i woke up at 1 and decided to pee. and i had some pain from the undiagnosed arthritis in my right knee. then i couldn't find a comfortable position. i remember being more awake than asleep, yet the machine says ahi zero. as i result, i fell asleep pretty late maybe around seven then slept til 8:53.

the ahi of .23. with this night, i learned some stuff. i have an old soft knee brace laying about which i used and almost eliminate knee pain. i am taking electrolytes, mainly via liquid. but i switched of to the pill form. slept til 4:30 woke up at 5:30 to pee, napped until time to get up. note no obstructives yet two centrals late in the sleep. i hardly ever get those.

ahi of .90. woke up at 2 then 5. i had a slight bit of heartburn due to some spicy dinner. then the usual napping until wakeup time.

ahi .34 - slept until 5:30 then until 7.

through all of this, i woke up feeling only slightly groggy/foggy. this dissipates after my morning stretches. i'm managing my night time leg cramps with the electrolytes, the knee with knee sleeve and trying to keep inflammation in check with fish oil.

i like where i'm heading here. if i can maintain the habit of getting around six hours of sleep, then napping the rest, this will be fine. if i can get back to more solid sleep from that 5 to 5:30 wakeup and go to 7, i'd be down right giddy!

anyway, just wanted to let y'all know how the journey is going.

excelsior!
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Re: zonker therapy thread redux: livin' the dream

Post by Pugsy » Mon May 16, 2022 7:09 pm

You know I would be happy with any of those reports as long as I felt like I slept decently.
I never wake up bright eyed and bushy tailed...never no matter how soundly I might have slept. That's what I define as a morning person and never in my life have I ever been a morning person. It's just not in my DNA. Would I liked for cpap to make me into a morning person? Sure...but it just can't work that miracle.

I usually get a strong need to nap during the day if I haven't got at least 7 hours of halfway decent sleep and until recently I was doing good to get 6 hours. I think the SCS surgery has helped somewhat in that area as I seem to be averaging around 7 hours or on a rare occasion I have hit 8 hours of sort of fragmented sleep. I always wake up a few times to roll over, change position or whatever but that seems to be a little less frequent since the surgery.

Keep at it...keep doing the log as well. Don't beat yourself up too much if you have a bad night....we all have them from time to time.
In 6 to 8 weeks compare where you were at a week or so ago to where you are 6 weeks from now. I am betting the improvement will gradually be more consistent and improved a bit as well.

As for the pain...even low level pain will mess with our sleep and you are just going to have to experiment to figure out what works best for you. Taking some sort of pain med (OTC) at bedtime might be an option to help ward off some of the pain even if it isn't horrible pain at bedtime. Even one of the OTC pain meds with Sleep med combined might be an option.

Good job.
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Re: zonker therapy thread redux: livin' the dream

Post by zonker » Mon May 16, 2022 8:53 pm

Pugsy wrote:
Mon May 16, 2022 7:09 pm


Good job.
DAMMIT! i just wrote a very long reply and forgot to submit it.

<sigh>

but the important thing? what i quoted above. coming from you, it means a lot.

will come in tomorrow and try to reconstruct what i tried to post.
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Re: zonker therapy thread redux: livin' the dream

Post by zonker » Tue May 17, 2022 3:46 pm

Pugsy wrote:
Mon May 16, 2022 7:09 pm


Keep at it...keep doing the log as well. Don't beat yourself up too much if you have a bad night....we all have them from time to time.
In 6 to 8 weeks compare where you were at a week or so ago to where you are 6 weeks from now. I am betting the improvement will gradually be more consistent and improved a bit as well.
yes'm. i'm glad i got a bigger replacement notebook. i can put more detail in and can easily read it in review. and i'll continue to record the journal. at the bottom of each page, i've written "stay the course"!

i read here a few weeks ago where palerider was advising someone that they should write down how they feel upon wake up before looking at the numbers so that one isn't influenced by what that ahi is. that seems to be the way to go. like you, i'm not a morning person. yet another thing to be grateful for in retirement. if i have to get up to get to an early morning appointment now, i have no one to blame but myself! :lol: so i'm not surprised at the groggy/foggy feelings in the morning.
As for the pain...even low level pain will mess with our sleep and you are just going to have to experiment to figure out what works best for you. Taking some sort of pain med (OTC) at bedtime might be an option to help ward off some of the pain even if it isn't horrible pain at bedtime. Even one of the OTC pain meds with Sleep med combined might be an option.
i'll tell ya, it's not easy for me to inculcate a habit. of course, VERY easy to break one! :lol: but yeah, i'm starting to take aspirin or ibuprofen before bed. in fact, i did so last night. however, i may have taken it too close to bed. last night's sleep was restless due to that knee of mine. it started as soon as i lay down to sleep. kept going for quite a time until the aspirin kicked in. so i was tossing and turning for a bit. still, when i did get to sleep, slept until 4:50. so more evidence that i'm on the right path. i prolly just need to take the pain killer a bit earlier in the evening.

i seem to remember i wrote more yesterday before i forgot to submit, but this is all i can remember now. again, thanks for the advice.
[/quote]
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Re: zonker therapy thread redux: livin' the dream

Post by ChicagoGranny » Tue May 17, 2022 5:29 pm

zonker wrote:
Tue May 17, 2022 3:46 pm
i read here a few weeks ago where palerider was advising someone that they should write down how they feel upon wake up before looking at the numbers so that one isn't influenced by what that ahi is.
You might be thinking about Dog Slobber.
Dog Slobber wrote:
Wed May 11, 2022 2:20 pm
Do not look at your AHI, then make a note in your journal how you feel you slept and how you felt during the day.

*Then* write down the AHI.

Humans are pattern seekers, but sometimes we see (or even create) patterns that are not there.