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:
(04-27-2021, 01:38 PM)sheepless Wrote: 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?