Please interpret my flow limitations - UARS is debilitating

Can someone please help me interpret my Oscar waveforms?

If you could help figure out what anatomical site of collapse is likely causing them, and/or what BIPAP settings to use to treat them, I'd be grateful.

What I'm about to say is super confusing, so prepare yourself.

I have UARS, and am using a BIPAP (Resmed S9 Lumis VPAP 100 S) with a full face mask and mouth tape, trying various different settings each night but always at a minimum of 12 IPAP, 8 EPAP. If I go any lower than 12 IPAP, I feel that breathing in is too slow and laborious and I freak out. Not to mention my UARS is never treated at this pressure or anything lower. So I tried IPAP 13. Didn't feel any better the next day. Tried 14. Didn't feel any better, plus I got insane aerophagia and bloating, which I woke up to every hour. I also got unclassified events (centrals?) due to my EPR being on 4 (my centrals seem to increase when EPR is 4 or more, and when EPAP is 10 or over). So I feel I can't increase my EPAP over 10 in order to achieve an IPAP of 15 without an EPR of 4+, or it'll just worsen my aerophagia and centrals.

So basically I'm in a massive conundrum and totally untreated. I've been waking up each day so unrefreshed, having vivid dreams and restless sleep all night, and my fatigue is severe. Brain function is terrible. Can't work, drive, or even leave the house even though I'm only 25. I'm really in need of some help in the form of someone on here advising me what pressure settings to use to treat my flow limitations. And do let me know if I should just give up on BIPAP and if my brain will inevitably give me centrals with an EPR of 4 or more, meaning I can't reach the inspiratory pressure I probably need (15+).

I've had 5 different surgeries for my upper airway and still dealing with this debilitating condition, while using all my brain power to try to fine tune my BIPAP settings and figure out what to do next if it can't help me. Even just writing this was very hard.

Any observations or suggestions would be appreciated.
And before anyone asks, I've had extremely thorough blood tests and they're all normal.
Thank you


https://i.postimg.cc/3R1ffh6t/IMG-6672.jpg

https://i.postimg.cc/D0YjFg7s/IMG-6674.jpg

https://i.postimg.cc/KjYqdVhx/IMG-6675.jpg

Load data into SleepHQ. Can't tell much by Oscar screenshots.

Could you look at the data I’ve just uploaded on SleepHQ? Do I need to send you a link or can you just look up my data on there somehow if I tell you my username?
Many thanks

You have to make a public link to your report at SleepHQ and post it here so that the members can then access your report.
We have no way to look it up.

genz9000 wrote: ↑

Tue Apr 16, 2024 1:56 pm

Could you look at the data I’ve just uploaded on SleepHQ? Do I need to send you a link or can you just look up my data on there somehow if I tell you my username?
Many thanks

Go to the Dashboard page you want to share. Select the three vertical dots at the upper right... choose Share Page. When the dialog box comes up, select the file icon next to the filename/date... now the link is in your Clipboard. Paste it into a reply here. For future reference these links are stored in the panel on the left, under Share Links. You can use them again or expire them from there.

Here's a recent night of mine, for instance:
https://sleephq.com/public/daa43c55-bd2 ... 0c0736d5f3

Note the insane leak at 04:10... slept right through it! Had a few FL's... I guess that MAD is doing its job... wear it for an hour before bed.

genz9000 wrote: ↑

Tue Apr 16, 2024 5:51 am

I've had 5 different surgeries for my upper airway

Which five?

Pugsy wrote: ↑

Tue Apr 16, 2024 2:08 pm

You have to make a public link to your report at SleepHQ and post it here so that the members can then access your report.
We have no way to look it up.

I've finally gathered the energy to figure out Sleep HQ. Here are links to 3 different nights below. I would appreciate any advice, please elaborate on anything you notice in my wave forms. Thank you so much

https://sleephq.com/public/1462c781-f12 ... aba4f1c3dc

https://sleephq.com/public/98b8c343-f14 ... 0b3a322e6c

https://sleephq.com/public/8898cec7-67f ... 3c98e555f6

Rubicon wrote: ↑

Tue Apr 16, 2024 11:47 am

Load data into SleepHQ. Can't tell much by Oscar screenshots.

Please see my reply to Pugsy above. I've just shared the Sleep HQ links there

vandownbytheriver wrote: ↑

Tue Apr 16, 2024 2:21 pm

genz9000 wrote: ↑

Tue Apr 16, 2024 1:56 pm

Could you look at the data I’ve just uploaded on SleepHQ? Do I need to send you a link or can you just look up my data on there somehow if I tell you my username?
Many thanks

Go to the Dashboard page you want to share. Select the three vertical dots at the upper right... choose Share Page. When the dialog box comes up, select the file icon next to the filename/date... now the link is in your Clipboard. Paste it into a reply here. For future reference these links are stored in the panel on the left, under Share Links. You can use them again or expire them from there.

Here's a recent night of mine, for instance:
https://sleephq.com/public/daa43c55-bd2 ... 0c0736d5f3

Note the insane leak at 04:10... slept right through it! Had a few FL's... I guess that MAD is doing its job... wear it for an hour before bed.

Thanks for your input, you were able to help me figure out how to share the links. I've just posted them in a reply above

genz9000 wrote: ↑

Fri Apr 19, 2024 12:47 am

Thanks for your input, you were able to help me figure out how to share the links. I've just posted them in a reply above

Good job!

I'm not a doctor. I wish I was sometimes. I dabble here, hoping I'm helping someone.

Your breathing looks like Biot's Respiration. This is a serious condition brought on by neuronal damage. You should be under the care of a specialist.

Your machine is old, right? I have no clue as to what the proper machine for you would be, but the above named condition requires a ventilator.

https://en.wikipedia.org/wiki/Biot%27s_respiration

vandownbytheriver wrote: ↑

Fri Apr 19, 2024 4:40 am

genz9000 wrote: ↑

Fri Apr 19, 2024 12:47 am

Thanks for your input, you were able to help me figure out how to share the links. I've just posted them in a reply above

Good job!

I'm not a doctor. I wish I was sometimes. I dabble here, hoping I'm helping someone.

Your breathing looks like Biot's Respiration. This is a serious condition brought on by neuronal damage. You should be under the care of a specialist.

Your machine is old, right? I have no clue as to what the proper machine for you would be, but the above named condition requires a ventilator.

https://en.wikipedia.org/wiki/Biot%27s_respiration

Thanks again for your input.
I think you may be confused - I’m 99% sure the “unclassified apneas” you’re noticing are just treatment-emergent central apneas, or weird erratic breathing caused by the high pap pressures/high EPR messing with my blood gas balance. Or maybe just untreated RERAs. None of my sleep studies ever showed central apneas. And I never had these weird unclassified events at lower pap pressures. The problem is that low pap pressures don’t treat my flow limitations so I tried increasing the pressure and EPR, and this is what happens. And yes unfortunately my bipap isn’t the newest but it’s still a good model and was recently hired out to me by a legitimate CPAP store

genz9000 wrote: ↑

Fri Apr 19, 2024 5:13 am

I’m 99% sure the “unclassified apneas” you’re noticing are just treatment-emergent central apneas,

I don't know that I agree or disagree with your thoughts at this time. Some of that mess got flagged when you were obviously not asleep. Do we have any reports with either a much lower PS/EPR (as you call it) or no PS to see if PS is triggering whatever those UAs are????

How did they/you come up with a UARS diagnosis? Did you have an in lab sleep study done with a sleep tech in attendance?
Or did you come up with it on your own? If on your own....how did you come up with that idea?

It's above my skill levels though. Maybe Rubicon has some thoughts but I have zero idea what is going on and hesitate to make comments above my skill level about something that I don't know what is going on.

Have you ever seen a real pulmonologist??

Pugsy wrote: ↑

Fri Apr 19, 2024 5:33 am

genz9000 wrote: ↑

Fri Apr 19, 2024 5:13 am

I’m 99% sure the “unclassified apneas” you’re noticing are just treatment-emergent central apneas,

I don't know that I agree or disagree with your thoughts at this time. Some of that mess got flagged when you were obviously not asleep. Do we have any reports with either a much lower PS/EPR (as you call it) or no PS to see if PS is triggering whatever those UAs are????

How did they/you come up with a UARS diagnosis? Did you have an in lab sleep study done with a sleep tech in attendance?
Or did you come up with it on your own? If on your own....how did you come up with that idea?

It's above my skill levels though. Maybe Rubicon has some thoughts but I have zero idea what is going on and hesitate to make comments above my skill level about something that I don't know what is going on.

Have you ever seen a real pulmonologist??

I don’t know what else to think about the unclassified events, as no-one else is telling me what they are. I know I used to only get like 1-2 centrals an hour when I was using a Resmed For Her CPAP with a PS of 2. The BIPAP I’m now using classifies centrals as “unclassified”, whereas the For Her CPAP classified them as centrals I’m pretty sure.
I can see if I can upload data from my old CPAP machine to Sleep HQ.

I was diagnosed with UARS in 2020 by my sleep specialist because a sleep lab technician had written during a sleep study that I have frequent subcriterion respiratory events contributing to arousals, and the sleep specialist coupled that with my symptoms, upper airway anatomy, and the fact that I had a tonne of arousals on my sleep study.
I don’t think I’ve ever seen a pulmonologist. I did see an ENT last year and he assessed my throat with an endoscope and said I would benefit from a MAD. And that everything else looks fine except my tongue, which is intruding on my airway.

This post was actually one of my last resorts. I was told you were good at interpreting wave forms.

Could you please try to ascertain if my wave forms look abnormal to you, during the moments where I wasn’t having unclassified events? Please let me know

genz9000 wrote: ↑

Fri Apr 19, 2024 6:12 am

I was told you were good at interpreting wave forms.

Me as a person or the forum members in general?
Rubicon is much better at this thing than I am. I just dabble in it and I only barely understand the basics. When I see something like your report my eyes glaze over. I don't normally evaluate flow rates from the type of machine you are using and mainly I just look for awake vs asleep breathing. The other subtleties I leave to the pros which I am not.

genz9000 wrote: ↑

Fri Apr 19, 2024 6:12 am

Could you please try to ascertain if my wave forms look abnormal to you, during the moments where I wasn’t having unclassified events? Please let me know

They don't look "normal" to my eye as they appear to be "too pointy" and not rounded. Why? I have no idea.
It could be what the machine is forcing your breathing to be doing and not you yourself and when not using the machine your flow rate is more "normal" looking. I do know that there is a lot of evidence of awake/arousal breathing going on during some of the night both with and without flagging. I also don't know anything about whatever surgeries you have had and their potential impact on the shape of the breaths.

Might be interesting to see a cpap report from your old machine if possible to see if the breaths looked the same on an different more traditional machine.

And we wait for Rubicon's thoughts.

Edit: One more question....has any of your doctors seen these reports and if so, what was said?

genz9000 wrote: ↑

Fri Apr 19, 2024 6:12 am

I can see if I can upload data from my old CPAP machine to Sleep HQ.

Unfortunately without paying you only get one machine per account. You'll have to create a separate account to do that. Oscar printouts would probably do, if they're mundane.

You've had lots of surgeries. One cause of Biot's is pressure on the medulla. Yes the pattern resembles CO2 strippage and the pressures you've chosen certainly could cause that.

Bowing out now... good luck.