Maybe I have apnea, maybe not, are all sleep doc jerks?

[cathyf]

This one is the “nova” brand— it’s the brand carried by my local (not chain) pharmacy. 

It looks to me like the sizing on these guys is a little haphazard. According to the box, this brand has 3 sizes
2.5” x 19.5”
3.25” x 21.5”
3.75” x 21.5”
I have the first two. I first bought the only size that the Walgreens had, which is listed as 3.75” x 21.46”

The “short” guy is actually 20.75”
Medium was 21” and is now 19”
The Walgreens one is 22” (which makes the precision of “.46” giggle-worthy)

The Walgreens brace has a deeper “dip” in the front so it’s actually a shade shorter than the nova brace. And the side of the chin being taller bumps the straps on my FFM— but isn’t a problem with a nasal mask. 

I’m planning on taking another inch-and-a-half off the other side so that it won’t overlap at all in the back. You can’t take less than that because the stockinette fabric springs back and doesn’t leave enough overlap to see.

[cathyf]

So I've been experimenting and gathering data sleeping in the cervical collar.

One of the first things I did was to get a nasal mask (Dreamwear) once I realized that the cervical collar allows me to sleep with my mouth closed. Given low leak rates, the collar helps to keep my mouth closed, too. I've been running the machine at low pressures (7/8, with 3 full-time EPR.) Remember that this is very novel for me -- I have ALWAYS needed to open my mouth to get enough air as soon as I get drowsy.

With the low pressures, I had some very scattered small leaks. and some significant bumps of moderate FLs. Lack of leaks confirms that I'm keeping my mouth closed (yeah!) and I think the FLs come from me not allowing the machine to raise the pressure. Since I force the pressures down, those FLs are unopposed -- I don't allow the machine to react the way that it wants too. However the unopposed FLs are NOT harbingers of apneas and hypopneas, with my AHI still minimal.
[attachment=31776]

Last night I set the pressures back to 7/15.

With the higher pressures, I had long periods of no leak, but also some significant extended leak periods. I think that these are mask leaks -- at least some are, because I remember waking up with air leaking at one side or another of my nose, and struggling because the pillow was pushing the mask away from my nose.

Looking at OSCAR, I've just come to a horrible realization!
[attachment=31775]

All along the last 6.5 years, I've had night after uneventful night, with every couple of weeks a night where I have nasty clusters. Something that always puzzled me was that the clusters were often associated with lots of leaking. I've struggled with ffm leaks because the masks just don't fit my little face properly. I wondered if maybe the events I would see were errors caused by the leaking -- I was thinking maybe the machine couldn't measure the pressures properly? I also have nights with lots of leaks but no events. Sometimes I remember waking up with the leaks, although my husband reports a much higher level of noisy leaks (trombone noise!) that I'm definitely sleeping through. But I do have lots of memories of arousing a little and wiggling my face this way or that, getting the noise to stop, and going back to sleep.

Well after last night's experience, in light of the new understanding that you guys have given me about chin tucking and positional apnea, I think I know what's going on.

When the mask starts leaking, I start moving to try to make it stop. Last night at least twice I realized that I had managed to push my chin down behind the collar! I'm pretty sure that's what was going on here:
[attachment=31777]
UserFlag#1 is 40% for at least 7 seconds. Those in the picture, from left to right, 12 seconds, 13 sec, 155 sec (!!!), 26 sec, 31 sec, 74 sec, 12 seconds, then the arousal. From the beginning of the first UF1 to the end of the last one is 9:40, and 5:23 of that is in at least 40% flow restriction.

The Dreamwear mask that I had been wearing since June 2018 has always been a pretty "fragile" fit. The Amara View that I wore for the 2 years before that was even more dicey fit-wise. (Basically the circumference of those masks is the same in all sizes, with the small vs medium vs large being strictly about how far your nose sticks out from your face. My face is just too small for this.) I'm now thinking about all of the vague 3/4-asleep memories of arousing with mask leaks, and now I'm thinking that OMG -- I was tucking my chin trying to shift the mask to a better spot a lot of those times!

So here's where I think I am:

-- I have severe positional apnea when I tuck my chin, and the only way that I can prevent that from happening when I'm asleep is to wear the $12 piece of foam around my neck. I think I may need to cut about another 1/4" of foam out of the collar so it's a tad more snug, because last night I managed to tuck my chin down behind it.

-- The chin-tuck catastrophes take the form of cycling through worsening FLs which crash into OAs and hypopneas, momentary arousals, back asleep into FLs-progressing-to-events, over and over.

-- When I am NOT in positional apnea, I spend the night cycling back and forth between light and moderate FLs, which end in arousals, with occasional big FLs, but still have a zero or near-zero AHI.

-- The $900+ APAP is simultaneously making things better and worse.


---- If I set the pressures low, I'll get significant strings of flow limited breathing that end in arousals.

---- If I let the pressures climb, I have trouble keeping the mask on, which causes arousals, and if I chin-tuck to try to settle the mask, I'm back in the positional apnea. (Although the collar actually seems to keep me out of OA land. But the arousals are still bad.)

---- The nasal mask I have was a free sample from my DME because I'm not eligible for a whole new mask until May 12. (Stupid insurance rules will buy me huge numbers of cushions I don't need, but won't let me change to a whole different type of mask if what I have isn't working.) I really wanted pillows because I'm thinking that pillows will stay in place better. Have fingers crossed that will happen!

And I find myself back at the same place I was in fall of 2014, watching the machine go into hysterical pressure boosts in reaction to the flow limitations, and trying to figure out just how serious the FLs are when I'm not doing the chin-tuck thing. Yes, the chin tucking is catastrophic, but I've also just got a smaller airway all around and I'm not sure that those "regular" flow limitations aren't harmless.

...it's been a learning experience for sure, and I still don't have it figured out.

[SarcasticDave94]

Well, the stats look OK. Hmm a .14 AHI. I could have said you can do better but I'll be nice this one time.

I think I missed it in the 500 word essay, are you feeling better for the effort or no? Really the stats in OSCAR are fine. But I guess you've a touch of OCD or CDO or something and keep digging. Nothing wrong with that actually, but from my outside view, the therapy is going just fine.

Don't mind my sarcasm too much, I try to treat everyone equally... Badly. Anyway again I'll say the stats look fine and hopefully it's doing well.

[cathyf]

Well, the stats look OK. Hmm a .14 AHI. I could have said you can do better but I'll be nice this one time.

I think I missed it in the 500 word essay, are you feeling better for the effort or no? Really the stats in OSCAR are fine. But I guess you've a touch of OCD or CDO or something and keep digging. Nothing wrong with that actually, but from my outside view, the therapy is going just fine.

Don't mind my sarcasm too much, I try to treat everyone equally... Badly. Anyway again I'll say the stats look fine and hopefully it's doing well.

The constantly waking up all night to futz with the mask would certainly explain why I feel tired. 

The flow limitations followed by arousals? I have no idea if they mattered.

[Sleeprider]

I really like how you analyze your therapy and make appropriate adjustments. I'm sure there are others that follow your posts and benefit from seeing your approach and overall good success.

[SarcasticDave94]

If only the doctor would pay this much attention to detail on settings and results. Then we can probably become Coffee Board instead. But since Dr. Dolittle won't be this detail oriented, they're still relegated to the script writer and boat payment collector and we're still Apnea Board.

[ArcherNeedsSleep]

I really like how you analyze your therapy and make appropriate adjustments.  I'm sure there are others that follow your posts and benefit from seeing your approach and overall good success.

I second this view.  As an analytical engineer-type person myself, I always want to know why things work the way they do, and I really appreciate how you walk through the data to get to your conclusions.  I've been learning a lot by reading your posts and all the additional inputs from the forum experts.  Thank you for sharing.

[sheepless]

to my eye your chart looks quite good except with regard to flow limitations. they're not necessarily a problem but if the machine response isn't resolving them and is instead making things worse by contributing to arousals, it may be time to look into vauto.

when I use apap - actually apap, vauto and asv - pressure will run away as high as allowed, causing leaks, aerophagia, arousals, awakenings. high max apap pressure doesn't handle significant flow limitations well enough for some of us, even with with epr 3. not sure if this has been suggested already and it's not that easy to get a different modality machine but I wonder if you would fare better with the vauto with which you can cap max ipap to ease the mask/leak/arousal problems while better treating flow limitations with higher min pressure support.

[cathyf]

I'm trying to figure out the right way to proceed in what has become somehow more confusing the more I have learned!

To back up, this is a series of basically accidental events that I think really show how crappy sleep medicine is practiced.

I had a whole series of health expenses last fall that ran me up to my out of pocket maximum on my insurance. I came up with what I thought was a cunning plan -- I would try to get my APAP replaced since it was 6 years old and insurance would pay 100% if I got it before the end of the year.

So my PA -- who has always encouraged me to manage my own therapy -- sent me off for a sleep study. (Which did get paid for 100% :-) )

The sleep study came up as "Congratulations! You don't have sleep apnea! Stop using your CPAP! We're gonna have to cancel your prescription!"

I actually stopped using my cpap for three months, and my sleep, while more or less crappy, wasn't really noticeably crappier than with cpap.

Which brought me to mid-March, and another cascade of health events. (I'm already to 75% of the out-of-pocket maximum for this year now!) Because I'm trying to manage two different forms of arthritis in my hands along with carpal tunnel, the whole problem of sleeping on side (good for breathing while asleep, bad for damaging hands and wrists) vs sleeping on back (good for hands/wrists, bad for breathing) rears its head. I've never paid too much attention to this because I've always been a side sleeper. Looking at the "no apnea here" study I note that I spent only 27 minutes on my back, (7% of the study) and that was where I had a minor desat, all 9 RERAs, both apneas, and one hypopnea -- for a supine RDI of 26.

And then the sleep medicine circus rolls in. The way that it works here is that my little county with one little hospital for the whole county has a sleep lab in the little hospital. When you have a sleep study, the techs here run the study and they transmit the results to the sleep center for the whole hospital system which is in the big city. It's kind of like The Wizard of Oz -- with the Wizard in the Emerald City ("Ignore that man behind the curtain!") When my PA called last November to tell me that Dr Wizard at the sleep center said I was cured, she asked me if I wanted her to refer me for a consultation with Dr Wizard himself. I of course said yes, but it was now 3-1/2 months later and I figured I wasn't ever going to hear from them.

Just about the time I'm having the "oh sh*t" moment about needing to sleep on my back, they finally call to schedule my appointment with Dr. Wizard. To get a feel for the timing... I drove 100 miles to my rheumatology appointment on a Friday, then the following Wednesday I drove back there for blood work. On the drive back I was falling asleep while driving and had to pull over for a half-hour nap to get home. Wednesday night I was deliberately trying to sleep on my back to see if I could get my wrists to stop waking me up. And my wrists felt great, BUT that night I had an AHI of 13.79, flow limits 95% at 0.36 and peak at 0.6, 23 minutes total time in apnea on 5-1/4 hours of sleep, and Thursday a 70-mile drive to Emerald City for the 9:30am appointment with Dr. Wizard.

Dr Wizard is the jerk in the thread title.

He first argued with me about the carpal tunnel ("you can buy wrist braces at the drug store"). Ok, to back up, I have this history with very severe wrist pain when I caught parvovirus b19 in 2009 and I got polyarthropathy syndrome that lasted about six months. Like virtually all women, my carpal tunnels are kinda marginal and I frequently get numb, tingly hands when I'm asleep. Well during the parvoo-b19 that kicked into overdrive -- the added inflammation made it so that I had the numbness and tingling while awake. Then I would fall asleep, and after being asleep for a bit I would wake up literally screaming in agony (when your spouse grouses about your snoring, you can tell my story and note that my husband had it way worse, LOL). When I woke up in agony I would be totally disoriented and have no idea who I was, where I was, what was happening -- classic sign of being violently awakened from deep sleep. After two nights of this I got a prescription for an anti-inflammatory which had dramatic effects -- it dampened the inflammation back down to numbness/tingling, which was fabulous. In a certain way this was the same sort of mechanism as sleep-disordered breathing, where minor changes from being awake to asleep turn a somewhat narrow passage to pinched-shut passage. And also the treatment is kind of analogous, a fairly minor pressure boost from a cpap machine opens things back up and makes a dramatic difference, just like the anti-inflammatory opened up my carpal tunnels just enough to prevent the gladly-chop-my-hands-off agony. And even the link to sleep stages -- most people have much more severe apnea in REM as opposed to non-REM, while I think with my wrists it was the deep sleep that was kicking off the pain. But to make a long story short, I take carpal tunnel very seriously because I have two slowly but inexorably progressing degenerative diseases that are attacking my joints. AND I consider my carpal tunnel to be primarily a sleep disorder and it's just as serious as sleep-disordered breathing.

So after lots of eye-rolling, Dr. Wizard decided that I should have another sleep study, and I should try to sleep as much as I could on my back.

That sleep study was two weeks later.

In the first of those two weeks, I continued to do experimentation on myself, achieving at one point an AHI of 79 with 12:48 of 28:33 total time in apnea in my biggest chin-tucking cluster. I made my way here, started this thread, was educated by you guys about positional apnea, bought a cervical collar, and by the time I got to the sleep study I am at the point where I can totally eliminate the positional apnea with the collar -- and as a delightful bonus I can sleep with my mouth closed for the first time in my life!

So the assignment was to do the sleep study as much on my back as possible. But I know it's not back but chin tucking, so I was chin tucking on my side, too!

I had all of my side-sleeping was NREM sleep. I made it to an AHI of 39, with a desat of 89%
Supine I had NREM AHI of 11, with a desat to 88%
Supine REM AHI was 42, with a desat to 86%

One thing that was kind of a cluster was that I could tell that the sleep tech was not happy that the order was for PSG only (because Dr Wizard was so busy rolling his eyes that he was SURE that the second study was going to show nuthin just like the first). So he didn't do a titration. What I seem to be seeing in OSCAR with the data coming out of the APAP is that my chin-tucking positional apnea LAUGHS at pressure! Zooms right up there to a crashing sh*t-show of not-breathing while the machine pegs at 20. But I think that it's pretty clear that Dr Wizard won't believe that unless I have a titration and the tech can't get the pressure to do anything.

AND what I know from the last month is that if I wear a cervical collar I can sleep on my back all night. And if I have the cervical collar on then I sleep with my mouth shut. And I don't NEED any pressure to do that.

BUT there's the flow limitations. Always the flow limitations! They are what has perplexed me for the going-on-seven-years of sleep apnea treatment. The machine treats flow limits because the experts all know that flow limits are harbingers of apneas/hypopneas and if the machine ramps up at the first sign of FLs then it can head them off. But I'm in the same boat as sheepless:

when I use apap - actually apap, vauto and asv - pressure will run away as high as allowed, causing leaks, aerophagia, arousals, awakenings. high max apap pressure doesn't handle significant flow limitations ...

Pressure doesn't fix my flow limits.
Pressure won't prevent my apneas/hypopneas.
If I don't tuck my chin, there aren't any apneas/hypopneas to prevent.
The cervical collar actually tamps down the flow limits quite a bit, but I still have pretty significant flow limits all night.
I really have no feeling for how much the flow limits actually bother me. I always have flow limits so I have nothing to compare to.

I think I have two choices:

1) Sleep with the cervical collar and the cpap. Go to my followup appointment in June, which is actually with a sleep center nurse practitioner, not Dr Wizard, and play dumb about my understanding of positional apnea. Try to argue for a VAUTO. Not sure what it will take to get me one -- will I need yet a 3rd study with a titration? If I chin tuck (and my 2nd study proves I can chin tuck like a boss LOL) will they try to eliminate the apneas/hypopneas/desats with pressure and fail, and will they then try with a VAUTO?

2) Go to the followup appointment in June, bring along my cervical collar and my data card, and show the nurse practitioner how I have cured my sleep apnea with this $12 piece of foam, and don't need a cpap machine, thank you very much. Sleep with the collar (kind of nice to be able to go camping and not worry about electricity!) Occasionally mask up for a night and make sure I'm still cured. That means that I ignore the flow limits. I could look around for a used VAUTO which I buy out of pocket, and eventually get masks from ebay, etc.Then I can explore further whether the flow limits are bad for me, whether I can use a VAUTO to get rid of them. But all of that will be on my own dime, because insurance won't pay for flow limits.

Anybody have any wisdom?

[Gideon]

You have a sleep study coming up.  Ask for a split study with the NP.  BUT this is with and without the cervical collar and both on your back.
Those results should be interesting.  

2nd thought. UARS and a clinic that was trained by Dr. Barry Krakow.  They know flow limits and how to manage them.

http://www.apneaboard.com/wiki/index.php..._and_BiPAP