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+--- Thread: Two years into xPAP, still not feeling well. (/Thread-Two-years-into-xPAP-still-not-feeling-well)
Two years into xPAP, still not feeling well. - RickRock - 06-20-2024
Hello everyone,
I've been reading up on this board for more than two years now, comparing my OSCAR data to screenshots posted by users.
After trying every possible setting, I still can't seem to get it right. So finally I'm posting here in hopes of some new ideas.
Short background:
Currently 26y/o and normally healthy apart from my sleep struggles. Its about three/four years ago my tiredness got so bad I eventually had to drop out of my degree.
After my first PSG of AHI ±10 (mainly hypopnea), I was prescribed an MRA. While still in titration I also found out my tonsils were pretty substantial, which led to a tonsillectomy + UPPP. In terms of both AHI and subjective sleep quality the surgery did next to nothing. Post surgery PSG got me the same AHI. Tried to get back on the MRA, but PSG with it even showed slight increase in AHI...
So finally I was prescribed a CPAP at 6cmh2o which did manage to get my AHI down to <5. The PSG while wearing CPAP seemed pretty decent according to my doc. And he assured me my sleep quality couldn't be the culprit for any fatigue / oversleeping (>10h/night) / mental fog etcetera.
Thinking it would be stubborn to disagree with a doctor, I temporarily stopped looking in SDB any further.
However after having had extensive blood work done / urine tests / echoes of the internal organs / EEG of the heart, which all didn't show any abnormalities, I was lured back into evaluating my CPAP therapy.
(I also strictly assessed my sleep hygiene, and I pretty confidently rule out any cause there. Rather I feel like the oversleeping arises as a consequence. Whenever I put myself in a sleep restricted situation (8h/night for me), I just feel increasingly worse everyday).
I discovered OSCAR and the acces to the clinical settings. My first observation was a lot of FLs, which I suspected to interfere with a successful therapy. I experimented with increasing pressure and also introduced EPR to fight the FLs.
[attachment=65946] CPAP 6cmh2o
After some time I managed to get my hands on a second-hand VAuto. I figured this would be even more effective for fighting the suspected RERAs, while also ensuring more comfort. The PS did fight off most hypopneas and I rarely get an OA anymore. The Flow limitation graph is also much quieter than it was. I tried some different combinations of EPAP and PS during this time.
[attachment=65947] VAuto
Very recently I also upped the trigger from medium to high, and then to very high. Which almost completely eliminated any CA.
So seemingly I'm nearing great results, however it really feels nothing like it.
Sidenote:
An extremely helpful member on a different board helped me to acquire an ASV (using airbreak). Which I was very excited to try out, because the varying PS seems to provide relief for many users. It wasn't the overnight succces I was secretly hoping for. I did provide a screenshot, so maybe an experienced user can deduct interesting information from it.
From what I see it provides quite a bit more PS than I would've had using VAuto, all the while lowering the RR and MV. I deliberately cut off the maximum IPAP. I tend to get aerophagia with these higher pressures. And I want to prevent the machine completely taking over and putting me in an "overventilated" state.
I know I have no clear indication for using ASV. But I am open to try anything at this point.
[attachment=65948] ASVAuto
In conclusion; I feel like I tried so much at this point, but nothing quite seems to be going in the right direction. I did feel worse before any xPAP. And I'm still pretty sure there's something interfering at night, which lies at the root of my daytime complaints.
Please let me know if I can provide any screenshots or more info which might help us gain insight!
PS: My most recent PSG showed PLM of 17/h (even up to 56/h during REM). To me this sounds like a lot! But the other studies only showed around 7/h or less, so it's not immediately clear to me how I should value this.
PPS: There are still lots of irregularities happening in the flow rate graph, when shown breath by breath. I understand there will always remain some jaggedness
Maybe someone else knows what these are. I couldn't attach anymore images, so I'll try to add these in a reply.
RE: Two years into xPAP, still not feeling well. - RickRock - 06-20-2024
[attachment=65950] [attachment=65949] Example of irregularities which arent's flagged as an event.
RE: Two years into xPAP, still not feeling well. - SarcasticDave94 - 06-20-2024
I would think the VAuto would be likely your best bet. While you can mimic other machines with AirBreak style modifications, it never truly is going to act like the other machine. The algorithm isn't changing with the hack.
If you can't tolerate occasional high pressure, ASV isn't going to suit well, AirBreak style or not. In order to clear up CA sometimes it will need to blow hard and sharp.
Think on a few things. How long do you suspect you have had Apnea? How long do you think the treatment for this had been setup correctly or being helpful? Unfortunate there are also times when even well tuned Apnea treatment isn't enough.
Try this on the VAuto, edit down PS to reduce CA some, either 3 or 4. I suspect PS 5 is adding CA, not the right direction for you. Just edit that and try it. See what you think.
RE: Two years into xPAP, still not feeling well. - HalfAsleep - 06-20-2024
Would you mind filling out all the info in your avatar? It’s hard to tell quickly what machine you have. Use the entire model description, since many models sound alike.
All your changes are making me dizzy. It can take quite a while to adjust to PAP, new pressures, etc., and you’ve made a lot of changes in machines, settings, concepts. If it were me, my body would be getting very confused. I’m not a plug-and-play electronic device. My sleep would be poor if my body didn’t have a chance to catch up. So, I recommend selecting a setting and not messing with it for a few weeks. Then evaluate.
Also, it seems to be somewhat in the nature of REM that the waves get irregular. This is to be expected. Personally, I find if I zoom in narrowly on a wave pattern during REM, I can get very excited that I might be on the brink of breathing disaster. Then I have to remind myself that I’m not a machine, and REM has a job to do that no one exactly understands right now. I shouldn’t expect wave perfection, since there really is no such thing in a living being.
RE: Two years into xPAP, still not feeling well. - RickRock - 06-20-2024
(06-20-2024, 08:21 AM)HalfAsleep Wrote: So, I recommend selecting a setting and not messing with it for a few weeks. Then evaluate.
I understand this! My first night with CPAP was in December 2021. I then deliberately slept with the same pressure for at least 6 months. Only after this, I started experimenting. In doing so, I always gave each adjustment a chance for weeks, sometimes months even. My post is more of a summary of my trial and error process over the period of almost three years.
RE: Two years into xPAP, still not feeling well. - RickRock - 06-25-2024
I've slept with the suggested EPAP 7 , PS 4 for a few nights now.
[attachment=66152]
[attachment=66153]
[attachment=66154]
Here are my results of last night. Let me know what you think!