[Treatment] Struggling to treat UARS with BIPAP

[ewriter]

Hi,

I'm also awaiting a reply from SleepRider. I'm not sure if he's on vacation. Thanks for the details about Nurosym; it looks promising. I'm not sure what is going on with me except that sleep apnea definitely is a precursor. I also used ASMR audios for possibly 5 years (almost every night) and i think they may have induced overexcitation of my Sympathetic system; i stopped using them in November 2022 and in late December, or early January 2023, my "flutter" sensation returned. It's not a cardiac "flutter" per se though it seems connected to my heart. It seems more likely that it is n autonomic response induced by OSA; because i was not using the CPAP for probably 4 out of 7 days for a long time (i felt no need to use it as i was perfectly well and fully functional).

So, it appears my untreated apneas, as in the past, eventually irritated my heart and now i am dealing again with the same reflex, automatic reaction which occurs now every time i start trying to nap or doze, once my heart rate begins to drop towards 45.

Unfortunately, when i lived in the UK in 2006, i was put on Propranalol (120 mg) daily for my severe anxiety relating to "chest discomfort." It is not "discomfort" now but a "rolling/fluttering" sensation which, at it's worst, feels like what Afib or Aflutter might feel like (i have not been diagnosed with either, though i have seen many Cardiologists in four countries over 27 years about this).

So, to summarize, i suffer also from severe allergies and a deviated septum; these make my sleep cycle difficult at the moment, because my nose seals up pretty much completely on the left side and my current Sleep Tech advised me to mouth tape, which i have been doing for maybe two months. The problem is, if i have a blocked nose, i might wake up struggling to breath against the mouth tape -- inducing the worst form of "flutter." 

I use a Resmed F20 or F30 Full Face Mask; the reason i switched from a nasal pillows mask was that there were a lot of leaks. However, i am now wondering if mouth tape is a good idea at all. For 80% of the 12+ years i have been using PAP, i never used mouth tape (but, then again, maybe that was a bad thing!).

The Nurosym device looks promising; but i don't really have another $1000 available right now after buying a new BiPAP ($2200) and going to see several specialists. I am self-employed and my wife's income is what supports me right now (though i worked for about 26 years before last year).

Though i have trialed the new Resvent BiPAP AS/T machine for more than two months, and we have made numerous changes to the settings, it often gives me <1 and even 0.00 on the AHI numbers; but it doesn't (yet) diminish the "flutter". The last time i went through this, i think it took a year or two to fully resolve the "chest discomfort" and severe anxiety, because it takes a long time for the Sympathetic nervous system to "let go and let God" (at least, in me) and so i will continue to use the BiPAP until i see full recovery.

My mood and daytime sleepiness have improved a great deal. The thing is, i am down to about 20 mg Propranalol a day (trying to stop it altogether after 16 years) and, since it reduced anxiety and blood pressure, it has proven difficult to get off it completely. I believe the beta blocker was what masked everything for many years and allowed me to live a full and active life; but as i get older, i am not so sure it's a good idea to be on it, since in some people it can cause heart issues.

Cheers!

Paul

[JohnPasha]

@Humancyclone7

Try S mode. Unless you have apneas, drop EPAP to 4. Start with PS-3, trigger 'very high'. Increase rise till you feel comfortable. If you feel better, try increasing EPAP in jumps of 2cm. If not, increase PS by 0.6 or 1. The goal is to find both optima of EPAP and PS. When you increase PS you may have to increase/decrease rise (decreasing works better for me).

[Humancyclone7]

Update:

I tried combining nasal EPAP (BongoRX) with BIPAP (13/3, trigger high) in the hopes that it would lead to more CO2 retention but unfortunately it did not seem to prevent hypocapnia as evidenced by the many CA events.

I have also tried setting rise time = 900ms and it felt very unnatural to breathe while awake, no surprise then that this also wrecked my sleep.

My focus now is on EERS which should directly address any hypocapnia, I'm just waiting for the parts to arrive. In the meantime, I will try combining acetazolamide with BIPAP.

I still need to find a good FFM that doesn't leak — if anyone has suggestions I'm all ears. 
I've already tried the AirFit/Touch F20, Evora FFM, Philips FitLife and F30i: the Evora FFM was the most comfortable and leak-free however, despite many readjustments and trying all the cushion sizes, it kept pinching my nose shut.

[ewriter]

Hi,

I tried S mode for one night but this mode did not help. I'm pretty sure i have some hyponeas but maybe no OSA. The reason S mode doesn't work for me, i think. is that it doesn't have Rise Time nor T (sensitivity) settings nor a backup rate. These three elements seem to work together to provide the smoothest and most lifelike breathing cadence and pressure (at least for me). I did increase Ti Max to 4 but this actually made things worse; breaths are too short for me even when awake. I currently use the Medium F20 mask; i also found the nasal pillows tend to squeeze shut my left nostril (the one that's deviated somewhat) and the cannula tend to cut badly.

Cheers!

Paul

[JohnPasha]

Rise of 900ms may be unnatural. Aim for around 400-600, which is midway for an inhale of 1-1.2 second. It'll have to be adjusted upon an increase in PS. An estimate could come from how long EasyBreathe rises till peak. 'Very high/high' in EasyBreathe takes longer to trigger than the same in S mode.

[ewriter]

Hi John,

Thanks for this! I will share with my sleep tech and make adjustments.

Paul

[Macka]

Just read some of the early thread. From the charts I saw there I think you have too low epap to be using that size ps. In the first chart, where the centrals are at the beginning and end of the night, it is my opinion your settings are all wrong for wake breathing. Its like you need the poor flow during sleep to make the settings work. This might also explain why you are worse with elevation. Anything that makes you breathe better, sends you into tecsa.

This is where I believe the sleep wake junk idea comes from. A lot of people with poor settings for wake times and sleep wake transition. I don't think this should be an accepted thing. I think you should be able to get your machine tuned so that it is super comfortable as soon as you put it on with only a slightly elevated tidal volume and lower resp rate, which switches once you doze off. You can see in charts these principles at work. Huge crazy flow rates with dotted centrals at the beginning and end of the night is a giveaway. See it a lot with ramps as well. You will see the first apnea arriving, actually saves the situation as pressure is applied and then you see their breathing settle down and sleep starts.

In trying to make it comfortable while awake with super low epap and large pressure support I believe you are causing the issue. Manufacturers algorithms limit pressure support like epr to progressively increases as pressure rises. Lowenstein does it with softpap until high enough pressure is reached to let you use the max level. I am sure I read somewhere resmed advice not to use epr 3 under 10cm min pressure. I see people developing centrals across the forums, especially at wake times with epr 3 on low pressures. Clinics send them home like setup for this. The difference between epap and ipap I think of as a ratio on a sliding scale of pressure that is progressively sensitive down low.

The trick then, is to discover and adapt your respiratory system to better settings. I think the start of this is getting used to higher epap. Nothing like a bit of pressure to breath out against and to steady Co2. Then you need to work on the timing of pressure arrival during your cycle, especially on a bi-level. As you apply more PS, the timing changes dramatically. On an autoset with only 3 epr the machines algorithm does this timing for you. On the bi-level you have way more control, which means you can get bent further out of shape too.
This use of memorized, arbitrary rules gleaned from the manufacturer documentation and internet experts is only maybe useful for first setup and general ballparking. During this process you have to look at how the machine is actually affecting your breathing, in the relationship between flow rate and mask pressure trace, in particular. Of course the other charts are needed as well. This is the time to abandon the generalized guidelines and set to your individual needs by reading these charts and using the machine settings to nudge your flow rates into a comfortable pattern. I firmly believe the more uniform and symmetrical you can get the flow rate signal, the better your respiratory comfort and stability.