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[Equipment] Massive leak rate, tape isn't helping
#11
RE: Massive leak rate, tape isn't helping
Congrats on the improvement! I'll be interested to hear how you do with the Knightsbridge strap.
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#12
RE: Massive leak rate, tape isn't helping
Well, I've given the soft cervical collar and the Knightsbridge about a week each to see how they fare. I can't say that either of them is a clear winner but I've had generally better leak rates with both when set up correctly. They're both uncomfortable and I can't see either of them becoming a long-term solution. I still describe my CPAP machine as "less terrible than when I started" though, so I could just be a curmudgeon in general. =)

The soft collar is horribly uncomfortable: it squeezes my throat and messes with my spinal alignment when sleeping on my side (I'm a side sleeper) causing lower back pain when I get up in the morning. Having anything constricting around my throat (collars, ties, scarves, etc.) is one of my least favorite sensations. If I don't have it adjusted just so, it makes zero improvement in my leak rate while still causing all of the discomfort. Might not be worth looking at a different model but I'm still open to options.

The Knightsbridge is simply uncomfortable: Having to deal with the bands pressed against my throat while dozing off is tolerable but I don't see myself ever getting used to it. It takes me several tries to find the right tension for both the fixed and the elastic strap--I don't understand why there are both--and the hook-and-loop system interferes with the strap on my nasal pillows. I can also see the hook side causing damage to pillow cases over time.

I'm really getting frustrated with the whole thing. Even on nights when I have acceptable leak rates, I wake up exhausted. Usually even more exhausted than the nights I have crazy leak rates.

I'm not sure if it warrants a separate thread but I've developed a thing where it feels like my tongue or soft pallet involuntarily spasms closed while breathing. It only happens once per episode and it's usually less than once a day so I have a hard time tracking exactly what part of my body is involved. Anyone else experienced this?
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#13
RE: Massive leak rate, tape isn't helping
Wish I knew something about the tongue-spasm thing, but it's new to me.

Another wish: that the Eliminator and/or Dr. Dakota collars were still available. You can wear them pretty loosely and still support your jaw, mostly through support of your chin.

A wild possibility: the Headmaster Cervical Collar. No pressure on the throat that I can see, though it isn't designed for night-time use and it is pricey. (It's to help people who can't keep their heads up during the day.)

I really sympathize with your frustration, though I do wonder whether some more time with one of your current options might help. I'm kind of amazed that I can sleep with the mask and pressure, and it took me quite a while to get used to it. But sleep I do, and pretty well.
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#14
RE: Massive leak rate, tape isn't helping
Forgot to attach screenshot of the summary. I moved the relevant data trends up since I'm dealing specifically with the leak rates and not the fine details yet.


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#15
RE: Massive leak rate, tape isn't helping
(09-13-2020, 08:19 PM)Dormeo Wrote: Wish I knew something about the tongue-spasm thing, but it's new to me.

It might be completely unrelated but figured it was worth a shot here.

Quote:Another wish: that the Eliminator and/or Dr. Dakota collars were still available.  You can wear them pretty loosely and still support your jaw, mostly through support of your chin.

The one I got is pretty simple, it just has to be strangulation-tight to keep my mouth closed and is thick enough that my current pillow situation causes misalignment.

Quote:A wild possibility: the Headmaster Cervical Collar.  No pressure on the throat that I can see, though it isn't designed for night-time use and it is pricey.  (It's to help people who can't keep their heads up during the day.) 

I've spent more on dumber things with less deliberation, so it's an option. =)

Quote:I really sympathize with your frustration, though I do wonder whether some more time with one of your current options might help.  I'm kind of amazed that I can sleep with the mask and pressure, and it took me quite a while to get used to it.  But sleep I do, and pretty well.

Thanks. I'm not to the point with my treatment where I look forward to it but I've at least gotten to where it's tolerable and doesn't actively wake me up anymore. I agree that just a week or two probably isn't enough to declare either one a failure since there's still some adjustment in them.
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#16
RE: Massive leak rate, tape isn't helping
I have been on you tube and watching " Lanky Lefty" about Cpap masks and issues. Lanky Lefty he is good at talking about issues also and was working for years in the  clinics evaluating folks with Apena. He mentioned that you can use a mouth guard (the kind you heat up and bite into to make a dental impression)that can help seal and lock the lower jaw from dropping off and wrecking a mouth seal. Never used one other than in hockey to protect my teeth and thought it might  help and not overly expensive to try also. According to lefty it works for some and not for others.
I just recalled they make a mask called Tap-Pap that uses a mouth guard concept with nasal pillows.
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#17
RE: Massive leak rate, tape isn't helping
I used a double mouth guard for awhile. It worked fairly well but I had my wisdom teeth removed years ago and air came through those spaces. If it were not for that it worked well and cost was less than $20.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed 
Cervical Collar     Dealing w DME     Chart Organizing
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#18
RE: Massive leak rate, tape isn't helping
Now we're getting somewhere! Haven't had a "frown face" on my machine in a few weeks now, major leaks are getting under control. Still needs work but it's better than it was last month.
   

Managed a night with "zero" leak rate on myAir app the other night. Oscar shows it as 0 at 95%, 2.50 max leak rate. AHI was 0.73, mostly from clear airway (central?) events. 
   

The next night wasn't as good for leak but was better than most. Clear airway events are the significant majority that night as well.
   

There's still a lot of variability in the setup of the Knightsbridge that needs to be addressed but I think it's time to start looking at events. It seems to be split between obstructive and clear airway. Where do I go from here?
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#19
RE: Massive leak rate, tape isn't helping
Well, first, your numbers are looking good, and you should probably start giving greater weight to how you feel than to the composition of the AHI or its size.  That said....

Take a look to see whether your CAs follow arousals.  See screenshot.  If they do, the basic problem is probably the arousal, not the CA.  There are several scenarios that might be going on.

One, which I think is illustrated here, is that the deeper breathing from the arousal washes out some CO2, which messes with the neurochemical triggers that say 'breathe now.'  Hence the CA.  I think here I wasn't ever really awake, though I probably got bumped out of deeper sleep to shallower sleep.

Another scenario is that the arousal results in your waking up.  Awake breathing is much more irregular than asleep breathing, and a CA could just be you pausing between awake breaths in a normal awake manner.

The million dollar question in these cases is why the arousal occurs in the first place, and often the data we can review in Oscar doesn't really answer the question. 

But I'm getting ahead of things here.  The question for you is whether you see this pattern when you zoom in on your CAs.


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#20
RE: Massive leak rate, tape isn't helping
I agree about weighting how I feel vs the numbers: the numbers look good but they've been hovering around 1 AHI for the last year on the statistics tab, regardless of the sleep deprivation I've been suffering from since Jan. I still don't think I feel well rested but the brain fog is starting to lift a little. I also use Sleep as Android and a fitness watch to track my sleep cycles via movement and heart rate. The trends there correlate loosely to the level of rest I'm getting--i.e. only a few hours of decent sleep on any given night in spite of being "asleep" for 8+ hours and not recalling waking up. The algorithm in Sleep as Android flags pretty much any raise in heart rate as being "awake" even if it's bordered by "deep sleep", so I take it with a grain of salt. Any idea if there's a way to import something like that to OSCAR for an overlay?

Looking closer at the CAs, I don't see any flags for RERA events near them. 
   

The last 2 weeks my RERA count has been very low, and only seems to happen at the end of a Large Leak, if at all.

--Edit--
Zoomed in on the two CAs to try and show the detail you were looking for in your screenshot.
   
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