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[Treatment] Struggling to treat UARS with BIPAP
#11
RE: Struggling to treat UARS with BIPAP
Almost all of your events are clustered at the beginning and end so the AHI number seems quite distorted. I wonder what is going on there. Even if it is just sleep/wake junk, it might be affecting your sleep. Do you have anxiety when you are awake and wearing the machine? Are you breathing evenly and smoothly?

Some people do find benefit from S mode over Auto. It looked like your EPAP should be 5.5, not 8, if I'm reading that right. Don't look at the 99%, start with the 95%. You might even be able to nudge down over time.

Given the erratic nature of the beginning of your graph, this might be a situation that benefits from ramp, but a ramp that starts at effective therapy pressure, and the min is EPAP 4, (I don't think PS ramps, does it?) Maybe start there if it's comfortable, maybe for 15 minutes to start (the length of that section with lots of variability.)

Just thoughts, without knowing all the history so take them with a grain of salt.

Lisa
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#12
RE: Struggling to treat UARS with BIPAP
Hey ewriter,

Thanks for the advice though I'm a little confused.

Correct me if I'm wrong, but the VAuto only auto-titrates EPAP (using the same algorithm as APAP). An ASV machine would be needed
to auto-titrate PS, and from what I've heard only the Philips ASV sets PS to defeat flow limitations, whilst the ResMed one sets PS to maintain a target minute ventilation — unfortunately I don't think we'll be seeing any of the former on sale anymore  Sad
As luck would have it though, my AirSense 10 CPAP has been jailbroken so it can now function as a BIPAP S, BIPAP ST, VAuto, ASV and ASVAuto machine (albeit some important features missing).
The best results I've gotten so far have been on ASV mode (EPAP=7-8, minPS=6, maxPS=13) including one night where I got a massive 45 mins of uninterrupted REM (see attached, felt great that day), unfortunately even with the same settings it's proving
extremely hard to get consistent results. I have also noticed across several nights with ASV that when the pressure goes to 17.5/8, I get periods of perfect looking breathing where my respiratory rate is low (see 2nd and 3rd attachments for example), practically identical to what MRI_Doc describes in this post.


I have tried CPAP in the past, and although it eliminated my OSA at a pressure of 8, it destroyed my sleep and made my daytime symptoms much worse. This was also true when I set EPR=3, although to a lesser extent. The best setting was the lowest with EPR on i.e. 7/4, and it still seemed to damage my sleep.
Later I learnt that this was likely due to 'expiratory pressure intolerance', which a lot of UARS sufferers seem to experience
on CPAP, but which they don't seem to experience on BIPAP (provided PS is high enough).

So that's where I am at the moment — I need pressure support to treat my flow limitations without causing expiratory pressure intolerance (and based on my ASV findings I seem to need PS=9.5), but I'm getting significant central apneas from PS=5. And if I use ASV mode with the minPS setting maxed out to 6, then the central apneas are treated but I get inconsistent results.

Side note: Are your palpitations resolved fully now? If so, what is the propanolol for? And if the palpitations aren't resolved, are you sure it's not being caused by any of the hypnotics you're taking, i.e. zopiclone, dayvigo and clonazepam? I see that palpitations are a side effect of all of them, and you mentioned you rely on them to fall asleep — perhaps your body has built up a physical dependence for them?


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#13
RE: Struggling to treat UARS with BIPAP
(8 hours ago)Humancyclone7 Wrote: Ok, I'll raise trigger back up to high.

A few questions:

  1. Since EPAP consistently doesn't go above 8, can I return to BIPAP S mode with EPAP=8 and PS=5, or do I need to stick with VAuto? If so, why?
  2. I get that raising EPAP=less PS=fewer CA events, but could you elaborate on what you meant by 'raising your min EPAP to add more volume to your breaths'? I ask because I seem to do much worse on higher EPAPs, so I'd like to avoid it if possible.
  3. Should I continue sleeping in the inclined bed or switch back to a flat bed?
  4. If the goal right now is to reduce CA events, wouldn't I benefit from a room with elevated CO2?
My bedroom windows are closed whilst sleeping, but I usually air the room for up to an hour before heading to bed. The room is reasonably clean — no mould or other obvious nasties, just slightly dusty. I do have a deviated septum (blocking 30%-50% airflow on one side, septoplasty due October), but otherwise I don't think my nose is the problem; I seem to get no improvement from nasal dilators, nasal steroids, antihistamines and I had turbinate reduction done in August last year, plus the inclined bed should reduce nasal congestion even further. During the day, nasal congestion is rarely a problem for me either (only really happens if I'm infected) even though I spend a good chunk of my day in this room.

I think my flow limitations are arising more from the soft palate, tongue base and possibly epiglottis region (the tongue base looks to be pressing on it).
Here's the DISE I had in August 2023 right before I was given a tonsillectomy, RFA to the turbinates, soft palate, uvula and tongue base.

Thanks for sharing the additional info, it certainly sounds like you have tried a lot of things and obviously you have addressed a number of potentially physical obstructions.

In regards to your questions:

1. By all means you can go back to S mode, but from a personal perspective I like to experiment and observe all permutations of treatment that would be available on the machine I have and would want to see how you get on on Auto mode to see how the machine is responding. This can give you further feedback which can then potentially be applied to S mode, however again it seems like you have done this to some extent already. Nevertheless given that most of your events are CA's I would like to see what results you get in auto mode with high or very high trigger and whether that improves your experience. In S mode how prevalent are CA's?
2. If you feel worse on higher EPAPs then my suggestion is probably not beneficial. I was suggesting it on the basis that the low EPAP and PS may not be providing sufficient support to your breaths thus suggesting to increase preferably PS, but if not possible due to CA's increasing, then increase EPAP. Based on what you have said I would suggest simply focussing on whether you can address CA's with trigger setting and then see if it allows you to increase PS.
3. I cant comment on bed position but from what I understand some people benefit from the incline due to the reduced chance of the tongue going back into the throat. Have you ever tried those tongue retainers?
4. We are designed as humans, and I would assume the same when designing CPAP machines, to function on a natural CO2 ratio within the air. CO2 over 1000ppm causes a 10-15% loss of performance in brain function and how that impacts sleep I dont exactly know, but I have tested and if my PPM is over 1000 in the room my sleep is consistently bad and I wake and frequently cant back to sleep, if its 500-700 I will sleep through. Airing of the room doesnt work unless you have a huge room. I have tested this, I air the room get the CO2 to 500ppm close the window and door to my toom and by 3am im at 1100ppm and 1200 odd by the time I wake up. If have my hall way window open and then leave my bedroom door ajar. My ppm starts at 500 and is about 650 in the morning. You are generating CO2 and further compounding the issue while you are sleeping in a sealed room.

I have a deviated septum which blocks one side. During the day its clear, at night it will be clear but when I wake in the middle of the night its blocked and is generally consistently blocked during the night without the use of my air purifier. Personally I do what I can to optimise the air quality in my room and remove dust and all other particulate matter. It makes a noticeable difference to me. Better air filters improve a cars performance and I believe the same applies in humans.
When I was talking about mould I was not talking about mould you can see or on the walls or surfaces per se but at the microscopic level.

In S-mode do you use Easy Breathe or set a rise time?
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#14
RE: Struggling to treat UARS with BIPAP
Hi Ewriter,

Your story is a typical example of the lack of joined up holistic thinking within the conventional medical community where GP's, Cardiologists, Psychologists are all working in their own silo with little to no crossover in their knowledgebase.

My dad developed heart failure and mitral valve prolapse which I have no doubt was due to his sleep apnea, he heart was on the redline each night for his untreated apneas and ulitimately I suspect the value prolapsed due to massive wear and tear during the night.
He was fit slim and health to this, but due to his structural issues he had sleep apnea which I believe went undiagnosed for a long time. As It sounds like you are well aware, sleep apneas has a variety of effects on the cardiovascular system, as well as hormones involved in anxiety. Betablockers are the easy fix and my Dad was on Propanol too, didnt do his brain or energy levels any favours at all and he came off them and once he was on CPAP therapy he didnt need them as his blood pressure and heart rate was normal during the night . He also had palpitations when he developed heart failure prior to CPAP and likewise gone once on therapy.

Regarding the reason for the use of BIPAP some people struggle with CPAP and also experience anxiety from having to breathe out against pressure. BIPAP removes/reduces this element and improves comfort for people who suffer from this. There is also a case for BIPAP being a superior mode of treatment as the reduced pressure during exhalation allows for better ventilation. Certain types of Apnea and respiratory conditions need to be treated with more advanced modalities than CPAP can provide, hence why the various machines and modes exist.
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#15
RE: Struggling to treat UARS with BIPAP
Within the Resmed Range I have only seen that the UK/European Lumis 150 ST-A and the Aircurve 10 ASV auto trirates both EPAP and PS independantly. As you state PS is fixed on the Aircurve 10 and only EPAP adjusts. PS just moves as a fixed sliding scale which is a big problem if you need both high PS for support and high EPAP to clear OA's as you end up with a very high IPAP and thus mask leaks.
From another recent conversation on here it sounds like the Lowenstein Prisma ST series units have an independantly configured PS range separate from EPAP so it may also be worth investigating if you can get your hands on one of them.

Do you have iVaps mode on your jailbrake device?

The waveform you displayed on ASV mode looks perfect (to me at least), have you exported the 17.5/8 pressures to S-mode and seen what effects that has? I dont know a lot about ASV, but I guess its probably not as simple as that and its doing more advanced monitoring in ASV mode and applying other elements perhaps to keep things stable. As I recall from another post ASV mode is very limited and is more of a set and forget type of thing where you cant adjust much in the way of parameters right?

You mentioned that PS of 9.5 is what worked best, if that is the case, then it would make sense to focus on the trigger settings and see how high can you raise your PS and keep CA's under control. Remember it may be the case that the CA's subside as your body adapts so you will need to work upto 9.5 incrementaly over time.
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#16
RE: Struggling to treat UARS with BIPAP
Hey Lisa,

When heading to bed, I like to fit my Evora FFM by turning on the machine and setting IPAP high (20-25), then adjusting it until I feel no major leaks.
This explains why I always get a cluster of leak spikes at the start.

As for the CA events, these clusters happen at the start because I'm still awake and I deliberately try to keep my respiratory rate low as I find that helps me fall asleep. When I first started BIPAP therapy around 2 months ago I did have extreme anxiety, and it took at least a week before I could even fall asleep — now that happens every night and within 20-30 mins usually.

On this particular night I had a cluster of CA at the end because I had woken up around 2:25am, then tried and failed to fall back to sleep i.e. it was just awake breathing being flagged as CA.
Otherwise, on other nights, I still get CAs (if not using ASV mode) but they don't appeared to be clustered (see attached example of BIPAP S 14/8).

I think EPAP was much lower than usual tonight because I spent practically no time in REM — Fitibt indicates only 3 REM periods lasting only 5,5,7 mins respectively, so I assume my airway didn't have the opportunity to become as obstructed as it normally would.


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