Newbie: Severe CSA, OSCAR help request.

[Ratchick]

Thanks, Dave and Sleeprider.

I'm definitely thinking an increased  EPAP min - simply because I was on fixed 15 before and I feel like that was helping at least improve my overall ventilation more. I'm not at all surprised that I would still need supplemental O2 either, and honestly, my initial reluctance has all but vanished now that I know it hasn't precluded me from getting the ASV. I'm hopefully that tweaking the setting combined with the O2 bleed will get this sorted out.

Thank you all so much for your support. I don't think I could have managed this last year without all of your help and being able to learn so much and to advocate for myself.

[SarcasticDave94]

Entirely up to you, but adding a bit of EPAP Min and Max might feel a bit more familiar. Equally good edit is default PS 3-15 range.

And you'll find out yourself, sometimes adding to EPAP or PS will feel very different. And then we can do an exchange thing too, where you reduce EPAP or PS and add it to the other for that difference in feel while getting the same IPAP.

Best wishes for that success.

[DaveL]

Ratchick you add a lot here! Your advice is excellent. Thanks for your comments. Stay well.

[Ratchick]

Did you know that being concerned that you spent over eight hours with your sats under 90%, with half an hour of that below 70% is "not important" and "chasing the numbers too hard" and you should stop and just go on "if you feel better"?


Note, this wasn't from MY doctor, it was from some random person I have never met and knows nothing about me because MY doctor has gone on holiday for two weeks.

Oh, and did you know that my pulse oximeter can't POSSIBLY be the same as theirs (even though it is) because my generic manufacturer's software doesn't look like the custom NHS software that they have? Who knew you can present the same data in two different reports? 

Adding a litre of oxygen dramatically improved my sats, from spending over 80% of the night below 90% and stretches of up to ten minutes where I was below 70% to last night where I spent just 25 minutes or so below 90% and about 30 seconds below 80% in 2 drops at the start of the night, with nothing below 85% after that. But apparently that's irrelevant if I don't FEEL any better. 

I mean SURE I don't feel like I've been kicked in the head by a freaking horse anymore as I did on Monday and Tuesday, but all she cares about is "well-rested". And even if I still felt kinda garbage because let's be real, a decade of untreated sleep apnea is probably gonna take a while to fully improve, especially with the added respiratory failure... how is that irrelevant?

Apparently increasing EPAP doesn't change anything, did you know that? Who knew?  But hey. At least she pushed my PS up to 4. Even if she DOES want me to run it tonight without the oxygen. Screw that. Tonight I'm having the freaking oxygen and maybe I'll try without it on the weekend if I actually get a decent night sleep first.

Sorry to be whining but I am SO tired and fed up right now. I hate being patronised and treated like I'm a freaking idiot. Hopefully, I'll be back to my normal self tomorrow, but I'm gonna log off now and try to sleep.

[SarcasticDave94]

Does this help?

Therapy Complaints, give the next number to the complaining medical person you deal with.

[Geer1]

I haven't kept up with all of your details recently but looking at that OSCAR view I can see that flow rate was diminished at both major drops in SPO2. Are you able to see if that drop appears to look obstructive or central? If obstructive I would try higher epapmin as it sounds like you are thinking of already.

[SarcasticDave94]

Maybe you might find PS Min 2 to 4 is a too big of a change. Or not helpful.

Myself, I'd maybe split the 2 point bump to splitting it between EPAP Min and PS Min.

[Ratchick]

LOL Thanks Dave. So frustrating to talk to them. And especially galling to be told I'm "number chasing" over sats that low.

So over the weekend, I did one night half and half (the first night) because I woke up after a short time with no O2 and the PS to 4, and I was back below 70 again, woke with an insane headache and it actually took an hour for that to wear off enough where I felt confident enough to sleep again. But I did so with oxygen the rest of the night and for the nap I had to catch up during the day.

The next night, I did all night without the oxygen bleed. And then last night, I did all night with the oxygen.

Ironically (thanks centrals for being inconsistent) last night had the worst AHI overall and had more of the big spikes down, but despite that, the overall SpO2 was much tighter and I spent less time really low than the night before. I definitely felt better today than the 14th where again I had an awful headache. The 13th wasn't too bad I was just exhausted from the broken sleep. Here are the charts and info:

Settings: 4-14 EPAP, 4-14 PS, so 8-28 IPAP.

15th January (1L/min O2)
1hr34m (15%) <90%
13m33s (2%) <80%
3m8s (0.5%) <70%
Min: <70%, Avg: 92%, Max: 98%, AHI: 2.52.

Full Chart | First Drop | Second Drop | Third Drop

14th January (no O2)
2hr 29min (23%) <90%
19min 44sec (3%) <80%
10min 52sec (2%) <70%
Min: <70%, Avg: 91% Max: 98%, AHI: 2.05

Full Chart | Drop

13th January
First Session (no O2)
33% of time <90%  
28% of time <80%  
14% of time <70%
Min: <70%, Avg: 91%, Max: 97%, AHI 1.91.

First Session - Full Chart | First Session - Drop

Second Session (1L/min O2)
3.6% of time <90%
0% of time <80%
0% of time <70%.
Min: 83%, Avg: 93%, Max:98%, AHI 0.76.

Second Session - Full Chart | Second Session - Drop

Nap Session (1L/min O2)
0.9% of time <90%
0% of time <80%
0% of time <70%.
Min: 87%, Avg: 94%, Max: 98%, AHI 0.00.

Nap Session - Full


Geer - here are some zooms of the two big drops and the hellscape of hypops between them from the previous chart.

Settings: 4-14 EPAP, 2-14 PS, so 6-28 IPAP.

11th January
2hr 32min (49%) of time <90% 
42min (13.5%) of time <80% 
20 min (6.5%) of time <70% 
Min: <70%, Avg: 91, Max: 97, AHI: 12.91, AI: 0.99.

Drop 1 Medium Zoom | Drop 1 Close Zoom A | Drop 1 Close Zoom B
Mid Drop Medium Zoom | Mid Drop Close Zoom
Drop 2 Medium Zoom | Drop 2 Close Zoom

Any thoughts and suggestions are appreciated.

[Crimson Nape]

Am I correct in remembering that you have to play their game on pressures before you can address this?

[Ratchick]

Yep. But I'd still appreciate feedback so I can at least try to nudge them the right direction.