introduction, and a history of apap->bipap->central apneas?

[Pugsy]

There used to be a sizable group of forum members who would meet every so often in the Denver area but I think that sort of died off.

[palerider]

ome have, so far my interactions outside the forum are limited to phone calls and emails, and packages sent and received.., though that is probably going to change, since I discovered that djams lives just down the street from me.

Most people haven't taken stalking to that level

. If you meet at a support group for sleep apnea, it's not stalking I would imagine...

Of course not, I was referring to his moving in down the street from me

[dogsarelife]

Of course not, I was referring to his moving in down the street from me

I misunderstood, didn't realize it was a recent move, just that you two had discovered you somehow lived quite close.

[palerider]

Of course not, I was referring to his moving in down the street from me

I misunderstood, didn't realize it was a recent move, just that you two had discovered you somehow lived quite close.

Oh, I don't know when the sneaky bugger crept in...

[dogsarelife]

Oh, I don't know when the sneaky bugger crept in...

hm sounds suspicious, and just like a stalker to fudge when they moved near you

quick detour if I may! My bilevel therapy has been going better - especially raising epap after the explanation that it takes care of hypopneas, and I have been feeling better since raising epap.

However, I am going to guess/estimate my AHI in REM is around 5-6 / hr? Not too bad, but I would like to get that better. And of course I have no way to know for sure I'm in REM sleep, but an educated guess based on tight clusters of OAs during the night, and also the way some other health conditions I have are affected. I guess I don't find any harm in my trying an auto bilevel, at the very least.

Questions -

1) If I'm going to get an auto bilevel, what's a good brand (compatible with sleepyhead, good algorithm for responding to events)? I see cpap.com has a couple for sale, but also a REMstar, intellipap, and Resmed 10 VAuto Bilevel.

2) If looking at craigslist, ebay, etc. what type of questions do you all ask before ascertaining if it's a good buy besides hours used? (i'll probably just end up coming here and posting anyway before buying anything, but figure it can't hurt to be educated)

3) Is there any way to try out an auto bilevel? I'm hoping if I can at least try an auto bilevel, see if I get improvements subjectively, and then I can convince a doctor to prescribe one for me and then get it covered by insurance?

Apologies if this is covered in other places, I did try to search for these things in the old posts before I asked again. thanks!

[Pugsy]

The clustering will be either REM related or supine related or maybe a little of both combined.
You will likely need a little more EPAP to break up the cluster or if/when you can get the auto adjusting model you just let the machine increase a bit and it kills them off.

I would recommend the ResMed AirCurve 10 VAuto (or it's older big brother now discontinued the S9 VPAP Auto if you can find a cheap one somewhere....they just don't get any better than that one.
I have used both ResMed bilevel and the equivalent in the Respironics bilevel....and I just prefer the ResMed...it responds faster and it's more quiet and I found I could get by with a little less EPAP/IPAP to start at the beginning of the night than I needed with the Respironics to essentially get the same job done. They both do a good job but less pressure overall is simply more comfortable IMHO.

[palerider]

quick detour if I may!

Well, this thread IS about you, drive it where ever you wish

1) If I'm going to get an auto bilevel, what's a good brand (compatible with sleepyhead, good algorithm for responding to events)? I see cpap.com has a couple for sale, but also a REMstar, intellipap, and Resmed 10 VAuto Bilevel.

I'm strongly in favor of the Resmed VAuto, it's the most responsive to your changing needs throughout the night (and a host of other minor reasons).

2) If looking at craigslist, ebay, etc. what type of questions do you all ask before ascertaining if it's a good buy besides hours used? (i'll probably just end up coming here and posting anyway before buying anything, but figure it can't hurt to be educated)

Pretty much just "hours used" and "is it from a smoking household" (if you're not a smoker) cuz destinking one isn't a trivial exercise.

3) Is there any way to try out an auto bilevel? I'm hoping if I can at least try an auto bilevel, see if I get improvements subjectively, and then I can convince a doctor to prescribe one for me and then get it covered by insurance?

I've seen a few places that would rent them, but it's not common.

[dogsarelife]

Thanks Pugsy and Palerider!! I took a look at some vpap autos and decided to wait on the purchase and try to focus on nose breathing for a bit and understanding sleeping versus awake breathing a little more. Nose breathing seems to have helped a lot, actually. I'm surprised. So thanks Pugsy for linking to the response from Perrybucksdad, and thanks Perrybucksdad.

and thanks for letting me direct my thread Palerider! I do enjoy the ribbing ( ribbeting? as there is a chunkyfrog around) too. nice mix here.

I wanted to check with you anyone who sees this - prior to coming to Cpaptalk I was sleeping with 15/8. After learning about pressure support and the roles of IPAP and EPAP, I played a little with pressures, trying 14/9, 15/9, but ended up around 15/8.6 as feeling the most comfortable, even though that's a fairly high level of pressure support compared what Pugsy had said she prefers to see. I figure it's ok while I'm trying to adjust to bilevel and better to stay with what keeps me asleep for now, and then I can slowly keep notching up my EPAP as it gets more comfortable for me.

AHI is always below 1 except for when the sleep doctor put me on 17/8 and my centrals shot up, but the whole time I was on apap for example, my AHI was <1 despite having a really low pressure, which I wonder if that's because I have UARS? Because I think Pugsy or someone said people with UARS tend to need much higher pressures than one would expect to get relief.

Anyway, as I was looking at the flow patterns in sleepyhead last night, which was actually a pretty good night of sleep, I saw that before every event I had, I took a big and deep breath. I've been noticing this for a couple of days now.

I apologize if I should be able to figure this out because it's really obvious, but

1) I just wanted to confirm that what I'm seeing means an arousal is causing the central or obstructive event, as an opposed to an actual obstruction or central event? Like a shift in position say, or maybe a little tossing and turning?
2) is it normal to move so much during sleep? I thought if you were out cold you tend to go to sleep and wake up in one position.
3) is this perhaps more common to UARS?

Thanks for any thoughts! hope you all are having a good weekend! it's nice in southeast Texas, though I'm sad winter is almost over for us.

Sleepyhead021519.png (168.17 KiB) Viewed 1104 times

[palerider]

1) I just wanted to confirm that what I'm seeing means an arousal is causing the central or obstructive event, as an opposed to an actual obstruction or not breathing, right?
2) what does having such frequent arousals mean - more evidence for the vauto, or maybe that I need to try a lower IPAP? or is it just part of having UARS to have arousals like this?

The pic you zoomed in on looks like something disturbed your sleep, and that caused you to briefly block your airway. (it's easy to block your airway, and you might do that while not trying to breathe.. so what would technically be a central (not breathing and not breath effort) is mis-characterized as an obstructive since all the machine can see is 'is the airway open').

We all need to remember that there's more to sleep disturbances than breathing issues. Usually some sort of pain will disturb sleep, whether it's your cat jumping on you, or a pressure point from the mattress causing you to have to shift, or an aching [insert body part here], all sorts of things can make your sleeping self want to move around, turn over, change position, etc.

If you're not seeing snoring, or flow limitations showing up, then your sleep disturbances are probably coming from something other than breathing problems.

It's important to fix the breathing problems as best as we can (with cpap) but sometimes in our quest for that, we forget that there's more than breathing issues that cause interrupted sleep.

Or, the tl;dr version, "your sleep breathing seems to be pretty good... any other things you can think of?"

[Pugsy]

1...Looks like arousal/post arousal flagged breathing to me. Not real as in sleep apnea real.

2...We don't always know what it means when we see a lot of arousals. It's normal to have some arousals throughout the night...how many is "normal" vs "abnormal"...I don't really know. I can't say as I recall ever seeing such a number. I think a lot of it entails what it means when we say clinical correlation is needed as to just how important arousals are.
Very many arousals means crappy sleep...now why it is crappy we don't always know. I always have at least a dozen arousals...that's a given with my back issues. A dozen is a low number for me...I would love to see it cut in half but that would be a rarity I know.
Bad nights I might see 2 or 3 or 3 even 4 dozen arousals. Usually my higher AHI nights are higher because of SWJ post arousal flagged events. My actual asleep flagged events I usually can count on one hand for the entire night if I have any at all.

So very many arousals usually less than optimal sleep quality which of course will affect how we feel during the day.
If a person isn't remembering many arousals and they are feeling decent during the day then I don't know what I would worry too much about a few arousals here and there.

Now if you look at your flow rate and you see arousal breathing like this below...the sleep quality is really in the toilet and the person is probably going to feel it. FWIW...this person doesn't have OSA. An in lab diagnostic sleep study showed AHI of less than 1.0.
Pretty much all the flags here are SWJ arousal related flags. He has more crappy sleep than good sleep for sure.

[dogsarelife]

We all need to remember that there's more to sleep disturbances than breathing issues. Usually some sort of pain will disturb sleep, whether it's your cat jumping on you, or a pressure point from the mattress causing you to have to shift, or an aching [insert body part here], all sorts of things can make your sleeping self want to move around, turn over, change position, etc.

@palerider -
Thanks for confirming that it looks like it's the arousal that's triggering the event.

also. hm. you have foiled my plans to blame sleep disordered breathing for everything I am wracking my brain trying to think what it could be. Feel pretty good about my pillow/mattress/pain levels not being the cause, nor pets. I read that stress can cause a lot of arousals, and I try my best to manage that. My stress levels are definitely much better than when my pressures were off, and definitely much better than pre-bilevel pap. could look into getting routine blood tests maybe? been about 6 months.

As for more mundane things - I think sometimes I do feel like I'm getting woken up from a blast of cold air. My humidifier is set at 3 and my tube temp is set at 80 degrees Fahrenheit, so maybe I'll try increasing the tube temperature and humidity, though I forget if that gave me rainout before.

Thank you for some ideas/places to go!

@Pugsy

Thanks for explaining about arousals. When you have a bad night of arousals, Is that the day when you just have an extra cup of coffee or two? work from home?

And yeah, it makes sense that you can have a low AHI and still have crappy sleep from arousals like the picture you posted. I think my sleep doctor said as much - doesn't matter if your AHI is low if your nervous system is still being disturbed all night long.

@Pugsy, palerider, or anyone who else who sees this and can explain to me -

This is a guide for techs performing a titration
https://www.aastweb.org/hubfs/Technical ... 63811483

and it says:

You have achieved an optimal titration when you see the following:
1. The Respiratory Disturbance Index (RDI) is < 5 per hour for a period of at least 15 minutes at the selected
pressure and within the manufacturer’s acceptable leak limit.
2. The SpO2 is above 90% at the selected pressure.
3. Supine REM sleep at the selected pressure is not continually interrupted by spontaneous arousals or
awakenings.

So on #3 - what would a tech do if (like me) the person is in supine REM sleep but still being interrupted by spontaneous arousals/awakenings? Lower pressures? increase pressure? play with pressure support? watch and wait?

I think that titration document is why I thought arousals are pressure related and are clinically important. Something like you hit a nice pressure and arousals go down was my thought process, but of course nothing ever seems to be that simple...

Gonna walk the dog before the sun sets, and hope everyone enjoyed their Sunday. Thanks for your help.

[Pugsy]

So on #3 - what would a tech do if (like me) the person is in supine REM sleep but still being interrupted by spontaneous arousals/awakenings? Lower pressures? increase pressure? play with pressure support? watch and wait?

Pray....
Spontaneous means we don't know what caused them and if we don't know the cause of something it's kinda hard to fix something.
They probably get noted and mentioned but that's about it.

When you have a bad night of arousals, Is that the day when you just have an extra cup of coffee or two? work from home?

I am retired...so I always work from home.
Extra cup of coffee sometimes....sometimes a nap depending on just how crappy the sleep was. Since I am retired I get to do that if I need to. I try to never nap after 4 PM though...I learned that when I do I always have trouble falling asleep later and I create a nasty little circle of crappy sleep/nap/can't fall asleep equaling crappy sleep again.

[palerider]

@Pugsy, palerider, or anyone who else who sees this and can explain to me -

This is a guide for techs performing a titration
https://www.aastweb.org/hubfs/Technical ... 63811483

and it says:

You have achieved an optimal titration when you see the following:
1. The Respiratory Disturbance Index (RDI) is < 5 per hour for a period of at least 15 minutes at the selected
pressure and within the manufacturer’s acceptable leak limit.
2. The SpO2 is above 90% at the selected pressure.
3. Supine REM sleep at the selected pressure is not continually interrupted by spontaneous arousals or
awakenings.

So on #3 - what would a tech do if (like me) the person is in supine REM sleep but still being interrupted by spontaneous arousals/awakenings? Lower pressures? increase pressure? play with pressure support? watch and wait?

I think that titration document is why I thought arousals are pressure related and are clinically important. Something like you hit a nice pressure and arousals go down was my thought process, but of course nothing ever seems to be that simple...

Well, aside from the first bit that 5 is a comically bad 'good enough' place for respiratory disturbances... 'spontaneous' means, 'it just happened but we can't blame respiratory events... so, really, what can you do at that point?

But, whether they're tracking flow limitations or other breathing abnormalities is anyone's guess.

This question might be better posted to Jason over at freecpapadvice.com/forum, since he does that kinda stuff in his 'night' job. (runs a sleep lab).

[dogsarelife]

I am retired...so I always work from home.
Extra cup of coffee sometimes....sometimes a nap depending on just how crappy the sleep was. Since I am retired I get to do that if I need to. I try to never nap after 4 PM though...I learned that when I do I always have trouble falling asleep later and I create a nasty little circle of crappy sleep/nap/can't fall asleep equaling crappy sleep again.

@Pugsy - oh interesting! for some reason I thought you still worked, perhaps with respiratory techs, perhaps with sleep doctors, or advising ResMed or Respironics. Funny the tales we spin about others in our head. I wanted to send my condolences for everything you went through recently with your loved ones. I hope that the same care you extend to others you can extend to yourself during this stressful time.

@palerider - Hope you had an ok week as well.

I don't know if this is interesting to anyone, but I think I figured out the source of my arousals! Basically I realized that I have almost never breathed through my nose, but I've trying to retrain myself to do so.

Well last week I had an experiment. I had a cold with some congestion, and to help with my nose, so I took some cold medicine.

it's amazing how much better I have been able to breathe through my nose and I slept like a baby.

I stopped the medicines after 3 days. slept ok, but not great.

However, the last three nights - I noticed I kept waking up trying furiously to breathe through one nostril, and failing!

It would seem that my nostrils collapse completely onto themselves upon expiring (I am blessed /cursed with a small nose), especially when I am congested. I watched myself breathe in the mirror and no wonder I'm getting aroused. When only one nostril is open and collapsing until almost completely closed off, I get a lot of aerophagia, breathing feels unnatural, I sometimes suck the contents of my stomach up into my mouth from the effort (even if I haven't eaten anything) and I'm pretty sure that's what is causing arousals that eventually wake me up.

I read a doctor say that if you have this sort of nasal collapse, it can feel like trying to breathe through a very flimsy straw, and that is exactly what it felt like - until I got up and took a decongestant and was able to fall back asleep for 2 more hours.

Someone described cpap as peeling back the layers of an onion, and that is definitely what this has been!

I don't know where to go from here, so asking for information/experiences again.

1. Has anyone found a device that helps keeping the nose propped open? or I guess maybe switching to the P10 might help with this? Does anyone use the P10 + breathe right strips, or is that a dumb idea? maybe taping the P10 in place? My nostrils move around so much from inhalation to exhalation I'm scared they will pop or force the p10 right out.
2. Since it's difficult to breathe during my nose during the day as well, is it worth it to look into sleep surgery? I really hate the idea of surgery and always try to avoid it all costs, but I don't know if it's any better to have to take decongestants for the rest of my life. And I love my nose, but my nostrils are comically small and collapse to the diameter of half of a pen upon expiration. No wonder I've looked at noses as nearly completely futile for breathing and only useful for smelling.

Thanks as always for responding. It's Friday and I hope you all are getting ready for a relaxing weekend.

[zonker]

1. Has anyone found a device that helps keeping the nose propped open? or I guess maybe switching to the P10 might help with this? Does anyone use the P10 + breathe right strips, or is that a dumb idea? maybe taping the P10 in place? My nostrils move around so much from inhalation to exhalation I'm scared they will pop or force the p10 right out.
2. Since it's difficult to breathe during my nose during the day as well, is it worth it to look into sleep surgery? I really hate the idea of surgery and always try to avoid it all costs, but I don't know if it's any better to have to take decongestants for the rest of my life. And I love my nose, but my nostrils are comically small and collapse to the diameter of half of a pen upon expiration. No wonder I've looked at noses as nearly completely futile for breathing and only useful for smelling.

Thanks as always for responding. It's Friday and I hope you all are getting ready for a relaxing weekend.

well, see, it's like this....i can't recommend the p10 "mask" enough. i won't go through my rambling background except to say that i thought i was a mouth breather, but managed to switch to the nasal pillows. it might work for you.

now, specifically to the stopped up nose thing, may i suggest you try Flonase? it's an otc medicine made to open up those nasal passages. i use a shot in each nostril before bedtime. i usually will take a second "hit" about 3 or 4 am if i'm up to go to the bathroom. but sometimes i just sleep right through without it. just depends if i'm up.

good luck!