[Treatment] Making my own settings

[Lady Knitsalot]

Would turning up my minimum pressure by a point or turning off EPAP help limit my CA events? I'm down to just one level of pressure relief after reducing it from three over several weeks.

Unfortunately I wasn't able to wear the collar for long. I started waking up with an aching jaw, because I was clenching my teeth all night. Apparently forcing my mouth closed while I sleep will do that, though I don't think I was grinding my teeth. I haven't tried mouth taping, since I'm afraid the same thing will happen. I'm pretty well practiced with keeping my tongue on the roof of my mouth while sleeping, so I don't dry out too badly. I'm using a fairly flat travel pillow (stuffed with natural wool) and sleeping on my side much of the time.

My sleep has been pretty good on average, but my central apneas aren't entirely controlled. Some nights' sleep are much more refreshing than others, and several nights a week, I wake with a noticeable headache, or even feeling a bit groggy.

Any suggestions are welcome. I have had my 30-day follow-up video appointment with my sleep doctor, who basically said 'keep up the good work" and offered no real insights. I know a lot of people struggle with CPAP therapy far more than I do, and nothing is ever going to be 100% perfect, especially since I'm getting older, but it seems like there are still some elements of my therapy which could improve.

This is a typical good night.
   
And a couple of not so good nights, where I woke up with a headache.
   
   

[SarcasticDave94]

If these CA events are typical, they're high compared to the rest of the chart, but in practical terms they're not extremely high. Over the 8-9ish hours sleep, even 15 or so CA aren't terrible.

It is possible some CA might even be sleep position changes causing breath holds. I'd almost begin treating the other events more than operating in CA avoidance. Unless this means the CA multiply.

CA avoidance means settings like low or no EPR, minimal pressure range, etc. Treating CA versus the rest is like the teeter-totter effect. CA are on one side and the rest are on the opposite end. Acts to push down CA will very likely elevate the others and vice versa, also at the expense of comfort.

One possible action is to trial lessening the CA avoidance actions. See if therapy becomes better overall.

[Lady Knitsalot]

Thank you. It's true, my numbers are not large on an absolute scale, and I recognize that many apnea sufferers would like to have them! For me, it's about trying to achieve good sleep quality more consistently. I haven't pinpointed exactly what leads to a "bad" vs "good" night, as it does not correspond absolutely with a higher AHI, and I have to use the Oscar notes function to keep track. Obviously there can be completely different factors like how much activity I had, or how much craft beer I drank. 

I tried one little thing last night (obviously the wrong one) by changing response from Soft to Standard. My CAs skyrocketed to five times the OAs and it was very much a bad night. This morning I reverted it to Soft.
   

[Lady Knitsalot]

After looking over various threads in the forum for more ideas, I re-set my unit to CPAP at 9.4 cm and EPR at 2. It's based on studies which implied that sudden pressure jumps with APAP may contribute to leaks and to sleep disturbance, and that the steady pressure of CPAP was better for many patients. The 9.4 cm is based on an average over many months of my 95% pressure scores while using APAP set at about 8 to 13 cm. 

This ought to be interesting if nothing else. I already gave it a brief trial while lying on my back.

[Lady Knitsalot]

And...yeah, no. I don't recommend this method. I tried CPAP for two nights, and just like it did when this machine was originally prescribed, it was mostly effective at not letting me fall asleep. Something about the action of CPAP vs APAP, even set at only 8 cm, makes it feel like I'm being pushed to take deeper breaths than I need, so I'm working at each breath rather than being able to relax into them. It's like being nudged into awareness over and over. At 9.4 cm, I felt hyper-oxygenated and wide awake, plus I got aerophagia and bloating.

So I re-set the machine at 3 AM to APAP and a similar range to what I was using before, 8 to 12 cm. I guess I'll stick with that for now. 

Interestingly, on that wakeful 3+ hours, the readout gave me a 1.5 AHI, all of them CAs. I was not asleep. Maybe that's my baseline breathing state while lying down.

And again, I'm glad I discovered the online resources available to sleep apnea sufferers, and also was able to realize my treatment was almost entirely up to me. I grew up in an era when doctors were superior beings whose knowledge must not be questioned. My sleep doctor is incurious, never read the messages I left on his online contact system, doesn't answer technical questions, does video appointments ONLY and therefore has not evaluated me physically (such as for a constricted airway?), rattles off a few of my sleep statistics he has obviously only just now pulled up on his screen, and that's it. Done. He made a mildly sarcastic crack about me getting things set up without my doctor. Dude, what alternative did I have? You were sleeping on the job. 

If I hadn't already taken my treatment into my own hands, I'd be in total despair right now. From sheer lack of sleep if nothing else. Thanks to all the advice here, I feel far better oriented to the whole struggle.