What's with this newbie data?

[Spy Car]

It's all very interesting, but to this point I have concluded you probably have mild complex apnea that will continue to be erratic with CPAP/APAP.  Your results don't really change with fixed pressure, EPR on or off and it is occasionally bad enough to be a concern as shown by your Olympic breath-holding above.  This is either going to settle out, or not and the ultimate therapy may be ASV.  Not the first time you've heard that, right?

Meanwhile, the objective is to get pressures as comfortable and effective as possible.  I can't tell you what to do because there is no right or wrong answer, but we have at least eliminated the simple possibilities.

That's not exactly prescriptive!

I hadn't had the ASV thing reach my ear yet with any overt highlighting.

"Complex apnea" was what the sleep center ARNP thought I'd have from my symptoms. That was before I had the sleep study. The sleep study missed most everything, as far as I'm concerned. They even had me negative for bruxism (I almost broke my jaw that night) 

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Here's how I think I should handle it.... I have my compliance review in 2 weeks. I'd like to be really prepared for it. I might need some help selecting key charts and 3 bullet points or so to focus on. My goal would be to advance my treatment so I can get relief for lack of sleep, 'cos I'm a wreck.

I'll leave my pressure at 5-15 until after my compliance appointment. That way, I don't have to deal with doctor fuss while they evaluate the situation and I wield my bullet points. Plus, I'll be able to see if I have fewer events as treatment settles in.

Does this seem like a productive plan?

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I've noticed that I get fewer leaks when I'm not trying to prevent leaks. Go figure.

My knowledge base is very low compared some of our members, but looking at your charts makes me feel you are walking a path that I have walked. You tried all sorts of things, but the CAs persist. It was the same with me, only my CAs got worse over time.

I'd be very surprised if you don't end up with ASV. 

To get there your doctor needs to document a failure with APAP/CPAP to fix the problem. Focus on the unresolved CAs. At some point, you will likely be asked to try (and fail) on Bi-level.

Bi-level (5 nights) was torture for me, but the sleep doc called it "good news" as it advanced ASV. My advice is to only do a "trial" with a borrowed Bi-level machine since you don't want to purchase something that won't work.

Neither of these machine types (CPAP/Bi-level) are designed to treat mixed/complex apneas.

Then expect another sleep study to prove ASV is effective (as it will be).

At the end of the process, if it follows the typical course, you will get the machine you likely need. It will take some patience and persistence.

I just hit the 2-week mark with my ASV. It was well worth the effort to get a device purpose-built to treat our types of mixed apneas. I'm feeling better already and am still in the shakedown period of adjusting to a different feeling machine.

I hope the process proceeds at the swiftest possible pace for you.

Bill

[HalfAsleep]

You are so encouraging, Spy Car.

My treatment trajectory is being completely held up by mask issues, at this point. The Sleep Center won’t even consider that I might be doing the wrong therapy until after the leaks are <15L,  which means first I have to have a mask that fits, then they’ll dink around with my settings (I’m guessing for several months, by which time I will already have test-driven every remote possibility on the strength of the collective wisdom of this board, while they’re just getting around to “try turning off EPR and come back in a month”).

And now I have the DME remotely changing my settings without informing me.

[Cpapian]

You can always turn your machine into airplane mode. Then they can't adjust your settings.

[Spy Car]

You are so encouraging, Spy Car.

My treatment trajectory is being completely held up by mask issues, at this point. The Sleep Center won’t even consider that I might be doing the wrong therapy until after the leaks are <15L,  which means first I have to have a mask that fits, then they’ll dink around with my settings (I’m guessing for several months, by which time I will already have test-driven every remote possibility on the strength of the collective wisdom of this board, while they’re just getting around to “try turning off EPR and come back in a month”).

And now I have the DME remotely changing my settings without informing me.

I believe that in one of your threads I warned you that this would be a "process." This isn't due to any great prescience on my part, it is just the way the system seems to work. In reality, you are way ahead of the game by discovering the problem early. Kudos for that.

I don't doubt for a moment that they will attempt to delay, as ASV machines are expensive. You will need to jump hoops.

Find your own way to respectfully self-advocate. Let them know you feel poorly, that you see CA events that you understand standard CPAP/APAP machines are not designed to treat, and that while you are open to some experimentation to see if setting changes can help, that you have tried many options yourself. Let them know you have limits, and that you feel that you are in dire need of effective therapy.

Push. Sometimes one has to be a nudge. If you cost them time it can be in their interest to yield (just to get you off their backs).

Even pushing it will require some patience. But my advice is to strongly "self-advocate." I wonder how many people in my health group who have numbers like mine have ASVs? Darn few (if any) I'd bet. Without the knowledge gained on this forum, I'd be another patient struggling by with sub-optimal therapy (but excellent compliance data) and everyone would be happy (except for me and my loved ones).

Good luck finding a mask that fits. 

You will prevail in this adventure. That is inevitable. Figure out how to best manage the sleep center to get them to do the right thing so you can start feeling better as soon as possible.

Best,

Bill

[HalfAsleep]

Thanks, Spy Car. The Sleep specialist did have a point that nothing can be evaluated unless I can see how APAP treatment goes, which would mean minimizing mask leaks.


I did a nap-time experiment trying to balance pressure with mask leakage until I get the right formula. My goal is to find a workable combination so I can get in a groove. So far, the leaks are messing up every night, and I'm getting neither therapy nor sleep.





After trying a couple of pressures (involving whether I could breathe or not), I settled on a range of 5-9.

I had a great nap. No mask fiddling. Felt way better than when I dozed off. Reasonable leak record. But....

HORRORS! the AHI is worse than my sleep lab diagnostic test. The AHI for this nap is actually 20 (this got averaged downwards during a later test when I was fiddling with the mask and had no events).

All those OA's!!!!! And one of those "are you sure I'm not dead right now" varietals. This one was the longest, but not the only crazy long one.

I see I maxed out the pressure (9) pretty much the whole nap.

I think I could conclude that I'm not getting any therapy at all at that range.....Or if I am, my pre-treatment AHI was waaaay underestimated. So I guess I'll try 5-10 next and see if I can still keep my mask from exploding.

Y'all will probably decide this is a nutty experiment, but have pity. Nutty is fighting with a mask and not getting sleep for a month.

Input please, but hold off on the tut tuts.

[HalfAsleep]

New update

I am appreciating my experiment on trying to balance treatment efficacy and reasonable mask leaks. My goal is simply to gain competence in mastering the hardware, so it's easier to home in on the best possible therapy. I had so many mask leaks, it was impossible to evaluate the effects of treatment. Besides which, I was adjusting my mask (P10) all night long, sometimes every few minutes. I was getting nowhere and extremely frustrated.

I switched masks to an Airfit F20 (not Touch); it is VERY comfortable. At first, this was extremely leaky too: more frustration. I had to do something.

My sleep study AHI was 18.

I set my machine at 5-10 last night. I had some high leak spots, but I think those were moments when I was adjusting my mask to an optimal position instead of a "maybe okay" position. I am trying to teach myself to find the sweet spot quickly. I'm after helpful habits.

I had a 15.92 AHI, mostly OA's (though SleepyHead graph hasn't convinced me these are correctly categorized, since there's no flow limit, no recovery breath, and frequently no warning on onset). I slept 7 hours.

My biggest concern is that I'm prone to loooong events.

I will keep that pressure tonight, and if I can improve on the leak rate, I will increase the pressure tomorrow.

I am feeling more confident that I can get the hardware to be helpful to me.

[HalfAsleep]

New phase....

Owing to colossal, out of control, leaks, I've been running an experiment. Prescribed pressure was 5-15. I lowered the max pressure until I could control the leaks. Once I mastered that pressure, I increased it by one. I've been at this experiment for 10 days or so.


This is where I am right now:




Ahhh....progress. Tonight I'll raise the max pressure by 1.


Questions:

How does the machine/SleepyHead evaluate apnea events for type? It seems as though a bunch of my events labeled OA are maybe not OA's?




I get really loooooong apneas, like this one, one of several 40+ recorded that night:





That's an apnea on inhale, correct? (I was going to call it an inspirational apnea  ). What might cause an inhale apnea? Also, SleepRider mentioned an October 23 thread expounding on inhale/exhale apnea, but I can't find the spot. Is there a link?

[Walla Walla]

Just wondering did you switch the mask setting when you started using the full face mask?

[HalfAsleep]

Just wondering did you switch the mask setting when you started using the full face mask?

Great advisor question.... The answer is YEP!

[HalfAsleep]

Another question:

I tend to get big leaks about 2/3 the way through my night. (Example above). On my current FFM, the mask gets into side farts, but other masks have also been known to levitate right off my face and shut the machine down.

I don't move around a lot in my sleep, and I don't see anything in my chart that would correlate with leak onset.

Several times, I have 't been able to get rid of the leak farts even by tightening the straps. Last night, I pretty much had to clamp my head like a vise (horrible headache this morning) to get the mask to shut up. The leak striations in last night's chart reflect my various and escalatingly aggressive attempts to get the thing to behave.

Curiously to me, the pressure isn't increasing at this time, owing to the fact that I'm grooving along at max pressure and have been for several hours. Any ideas on why the mask would go berserk right then? Every night?