CA (cluster?) events not reducing

[Dormeo]

I'm so sorry to hear about your continuing problems, and I wish I had some suggestions to make. Unfortunately, narcolepsy is something I don't know anything about.

It sounds to me as though your best bet is to return to the neurologist. Before you do that, you might want to keep a journal for several weeks detailing your pattern of sleep and wakefulness in detail. If you live with someone who witnesses your pattern, perhaps that person could come with you to the appointment to confirm the accuracy of your journal.

[Sleeprider]

Looking at your blood tests, I would bet your testosterone is well below normal. Fits symptoms and low blood counts (hemoglobine, hematocrit). Might be worth checking on the next test cycle. There are so many potential issues and drugs here that are out of my lane. All I can say is the problems are likely outside of your PAP therapy.

[T818]

thanks dormeo & sleeprider for your directions. I will continue the follow ups with the dr for now. good to know that pap therapy is not my concern anymore. i can focus on the mecidinal routes.

[T818]

Hi all,
I am back after much deliberation and have been suggested to try Bilevel which I have been using for the last couple of months.
I am glad to say that I am seeing significant improvements. but the fight isn't over yet.
Although I feel energetic & more awake than before I am still sleeping extra long hours like 10/12. Mornings are liitle difficult. Rest of the day, I feel good for couple of hours and then sleepy for a while. But if keep moving & doing physical stuffs I can push back.

I have tried couple of pressure settings such as 14/10, 12/8, 10/6, 9/5. I feel better with lower pressure settings comapred to higher settings. other settings are Ti Max-2.3, Ti Min-0.3, Trigger-very high, Cycle-med, easybreathe-on.

Please help me to fine tune.
https://imgur.com/a/VmZ6nAl

[Dormeo]

It's good to hear from you, and I'm glad you're feeling somewhat better.

You are in S mode, which does not have the capacity to track flow limitations. For that reason, I suggest you switch to V-PAPAuto mode, which will allow us to see flow limitations. You can emulate the exact same settings you have in S-mode this way:

Min EPAP = 5
Max IPAP - 9
PS = 4.

Please return other settings to default (Ti, trigger, cycle, etc.).

Post a chart tomorrow, providing all and only these graphs:

Events
Flow rate
Leaks
Flow limitations
Snores.

I'd also like to see a 90-second zoomed-in view from a portion of the night that looks calm and smooth, just to see what your normal sleep breathing looks like.

[Sleeprider]

Settings sound okay with PS 4 and the help of very-high trigger. Without seeing charts from those trials it is difficult to comment as we do want to see the results. Vauto mode with a limited range might be revealing. Your range of trials range from 9/5 to 14/10. With lower settings being more comfortable, I'll suggest EPAP min 5.0, IPAP max 12.0, PS 4.

[T818]

Hi Dormeo, Sleeprider,
Thanks for your suggestions. I will try these settings and share the result.

btw, is it allowed to share sleephq links here in this forum? I started in vauto mode at the beginning and uploaded the data to sleephq. sleephq allows to zoom in/out on the graps online. I am sharing the links for now. If its against the forum rules, I will delete them.
For the below I think Ti Max, Min were default. Later I changed Trigger to High & then very high which eliminated almost all CA events.

https://sleephq.com/public/60fcc803-e5ec...62afebe145
https://sleephq.com/public/0d912dd1-e5a8...2e11ea1777
https://sleephq.com/public/2d37dd8f-5067...06e8443b25

[Dormeo]

Yes, the SleepHQ charts are helpful in allowing forum members to zoom in and out. Oscar provides more types of information.

One small point: as you assess settings, don't place a great deal of weight on outcomes for short periods of machine usage.

I'm not sure how often you're changing your settings, but unless something is a disaster, you'd do best to try it for at least 3-4 nights before trying to gauge the outcome.

[T818]

Hi Dormeo, Sleeprider,
Last night I had inconsistant sleep. went to bed at around 2:00 am with settings 12/5 and wake up due to burping a lot at 4:30 am. after that reduced pressure to 9/5 but couldnt fall sleep untill 9:00 am.
other settings were Ti max-2.0, Ti min-0.2, Trigger-very high, cycle-med

I am sharing the screenshots, if this is not good enough, let me know please. I will share next night's data.

pressure: 12/5
https://imgur.com/a/qvAqgsA

pressure: 9/5
https://imgur.com/a/k71siJO

[Dormeo]

Well, it's not really possible to extrapolate much from so few hours, but I'd suggest you try the 9/5 settings again tonight. Sleeprider may have some additional suggestions.

Did you lie in bed for hours trying to fall back asleep? In general, it's best to get up after, say, 30 minutes lying awake. Do something low-key, like reading or listening to music until you feel sleepy, then go back to bed.