UARS Treatment [Using Philips ASV]

[sawinglogz]

Yeah, you can dumb down the ASV to act like an auto-bipap by turning off the backup rate, or even a cpap by setting psmin=psmax=0 and epapmin=epapmax.

[SenatorBirch]

Thanks EVERYONE.  Please bear with me while I educate myself on the terms and tech here. My son's too ill physically and mentally to address this himself; but he won't get better until we address it.  His (SDB) is just part of his problem - he had a bizarre prescription drug "malfunction" in Dec 2020 which has turned life into a living hell.  That and the SDB are tangled up together.

Anyway ...

1. Which should we tackle first: a) the RERA's he was originally diagnosed with; b) the central apneas that seem to have appeared only after beginning treatment; or c) both.
I think the centrals first, though I'm not sure he agrees.  His concern is, the backup rate does not 'prevent' a central apnea - it REACTS to one by giving a puff to encourage you to breathe, or something like that.  He believes this will further disrupt his already disrupted sleep.  (He experiences feelings of suffocation every night, and can feel his nasal passages obstructing, and at other times his tongue touching his palate causing 100% blockage.  He believes his poor sleep results mostly from this, but - bizarrely - if you ignore centrals, his "numbers look good".)

2. sawinglogz ... When you say "set the backup rate to auto and reduce the max PS", I need to understand what you mean. PS (Pressure Support) is not something you SET, correct?  It's diff:IPAP-EPAP?  So you're saying "set the backup rate to auto, thereby reducing the max PS".  Do I read you correctly?

3. You mention limiting the EPAP range.  Should we wait on that, and just change one variable at a time?

4. "Try to find a setting he can tolerate" ... which setting are you referring to there - is it backup rate ?  If I understand it, you can set it to auto, or tell it how many seconds to count in a central before it give you a puff.  I think in a private message you suggested setting that to a low value.  (My son tells me he is a slow breather, btw, in case that matters.)

5. We've discussed EERS as well.  I am thinking that this is something we should pursue in consultation with his doc.  If it is in fact TECSA, it seems to me that EERS (proactive) is a better route than Backup Rate (reactive).

Sorry if I appear overly cautious. It's partly my lack of knowledge (working on that), and partly that my son's physical/mental health is so precarious right now that we need to be careful.  I know I need to start actually making decisions and taking action.

I really appreciate your time and help on this.

[Joseph7647]

I would highly recommend Jerald Simmons. I would not rely on OSCAR for data. If he is having Central apneas and RERAS then the PES can properly test for those. Which he has

[sawinglogz]

1. Which should we tackle first: a) the RERA's he was originally diagnosed with; b) the central apneas that seem to have appeared only after beginning treatment; or c) both.
I think the centrals first, though I'm not sure he agrees.  His concern is, the backup rate does not 'prevent' a central apnea - it REACTS to one by giving a puff to encourage you to breathe, or something like that.  He believes this will further disrupt his already disrupted sleep.  

I agree with tackling the centrals first.

A central apnea is defined as a non-obstructive pause in breathing for a certain amount of time, long enough to affect your pulse rate and oxygen saturation. The machine pushes you to breathe at a continuous rate, which is way shorter than the length of time needed for a central apnea to affect the rest of your body. In "auto" mode, the machine tracks your breathing rate as it varies over time and gives you those puffs after it's clear your breathing rate has lowered dramatically. (You can set a fixed breathing rate, but I never liked that.) So it reacts to a "missed" breath by giving you a puff, but when that works, it prevents a full apnea.

The only frustration I had with the 960 ASV was that it took it a while to adapt to a conscious change in breathing rate. For example, if I had a vivid dream and awoke after a fairly fast breathing rate, my breath rate would drop dramatically as I was consciously breathing normally again. But that machine kept wanting to breathe at my previous (fast) rate, so I would have to hit the ramp button over and over right before it tried to give me a puff. After maybe 30 seconds it would relent and start tracking my new breathing pattern.

In contrast, on the DreamStation (900X110) ASV, a single press of the ramp button when I awoke was enough to get it to reset its breathing rate to match mine. (I guess somebody finally figured out that if I press the button, I'm awake, so my breathing rate is likely to suddenly be very different.)

(He experiences feelings of suffocation every night, and can feel his nasal passages obstructing, and at other times his tongue touching his palate causing 100% blockage.  He believes his poor sleep results mostly from this, but - bizarrely - if you ignore centrals, his "numbers look good".)

Low obstructive numbers suggests his EPAP is ranging high enough to keep his airway open for the most part. But saying "if you ignore centrals" everything is fine is like saying "other than that, Mrs. Lincoln, how was the opera?" The centrals are a serious problem and will definitely mess with your sleep.

Also, too low a PSmin will produce feelings of suffocation. His setting of PSmin=2 seems way too low. Anything below 3.5 made me feel like I was suffocating. I'd suggest setting PSmin=4. At PSmin he should feel like he's breathing very easily.

2. sawinglogz ... When you say "set the backup rate to auto and reduce the max PS", I need to understand what you mean. PS (Pressure Support) is not something you SET, correct?  It's diff:IPAP-EPAP?  So you're saying "set the backup rate to auto, thereby reducing the max PS".  Do I read you correctly?

No, on the Philips ASV, the way you set IPAP is via PS. Your pressure settings are: EPAPmin, EPAPmax, PSmin, PSmax, Pmax. You're right that PS = IPAP - EPAP, but the ASV doesn't let you set IPAP directly.

As an aside: this makes sense, since it can vary EPAP and PS, and specifying IPAP would be unclear as to what would happen when EPAP rises slightly. For example, if PS=4 and EPAP=7 (IPAP=11) and EPAP bumps up to 8, IPAP will bump up to 12 (PS still at 4). If you said IPAPmin=11 you wouldn't be telling the machine what IPAP should do when EPAP goes up. Should it stay at 11?

So set the backup rate to auto to let the machine give your son those puffs when he stops breathing. But also change PSmin/PSmax so that there's not such a huge range between PSmin and PSmax. Looking at your data, I'd recommend setting PSmax to somewhere between 4 and 8. The important thing at first is to find a pressure setting at which he can tolerate the backup rate. Once he can do that, you can tweak the pressure to treat all the apneas if PSmax=PSmin isn't sufficient.

3. You mention limiting the EPAP range.  Should we wait on that, and just change one variable at a time?

You can wait on that, or you could bump up EPAPmin to 6 rather than 4. I'd probably leave EPAPmax at 10 for now. (Almost all of his obstructive events are when EPAP goes below 6.)

I would turn on ramp and set its pressure to 4 with a 15 or 30-minute ramp. Do this so that he can reset the pressure when he wakes up in the night.

4. "Try to find a setting he can tolerate" ... which setting are you referring to there - is it backup rate ?  If I understand it, you can set it to auto, or tell it how many seconds to count in a central before it give you a puff.  I think in a private message you suggested setting that to a low value.  (My son tells me he is a slow breather, btw, in case that matters.)

By setting, I primarily meant pressure setting with which he could tolerate the backup rate. I'd start with backup rate set to auto, since it will track his breathing rate and match it. I never found the fixed rate to work for me.

To address his anxiety about the backup rate, you might try having him use the machine while watching TV or something relaxing. So long as he's breathing naturally, it shouldn't feel a lot different than with backup rate off. It's only when his breathing rate slows down dramatically that it'll shift to IPAP before he does. And if you limit PSmax=PSmin, it won't spike the pressure when it's having trouble treating centrals.

In fact, your son's PS (and thus IPAP) is wildly bouncing around because the machine is detecting untreated central apneas (due to no backup rate), so it's sometimes cranking up PS from 2.0 to 10.0 in one breath!

5. We've discussed EERS as well.  I am thinking that this is something we should pursue in consultation with his doc.  If it is in fact TECSA, it seems to me that EERS (proactive) is a better route than Backup Rate (reactive).

It's definitely worth asking about with your second opinion.

EERS isn't necessarily a silver bullet, so don't be discouraged if the doctor isn't familiar with it or doesn't use that treatment. There are a lot of things that someone can try who's listening to you and really monitoring your son's symptoms. If all of those fail, then you could try to search for a doctor that specifically does EERS titration.

As mentioned above, proactive vs. reactive isn't really applicable here. For me, ASV worked great for about 4 years (so much better than before!), and then it started to get worse. I slept a full night, but always felt terrible in the morning. The doctor I found who does EERS said he sees a lot of patients for whom the ASV disrupts their sleep. He thinks that's likely due to its insistence on a metronome-like consistent breathing pattern, which we don't naturally have. We also tried acetazolamide, but that didn't work for me.

Sorry if I appear overly cautious. It's partly my lack of knowledge (working on that), and partly that my son's physical/mental health is so precarious right now that we need to be careful.  I know I need to start actually making decisions and taking action.

You don't appear overly cautious, you're simply trying to figure out an unusual life-or-death puzzle without a lot of professional help. Also ask this second doctor about your son's mental health as a result of these issues. The doctor should understand how serious this is and help you find the help you need.

he had a bizarre prescription drug "malfunction" in Dec 2020 which has turned life into a living hell.  That and the SDB are tangled up together.

Would you be willing to share what that malfunction was? Is that when the SDB started? If you think it's related to the SDB, we're flying half-blind without knowing more.

[Sleeprider]

First of all, your son's therapy is worse than the UARS he set out to treat. We need to make some significant changes and see positive results, or the only logical course is to discontinue this approach. Events are essentially all central, so we can back-off on EPAP max without harming therapy goals. I note that there are no flow-limited breaths between the CA events, so a lower PS max is also justified. My thoughts on settings is to limit the range of EPAP and pressure support, but to enable the backup rate to 9 BPM. I suggest EPAP min 4.0, EPAP max 6.0, Max pressure 14.0, PS min 2.0, PS max 5.0 and enable the backup rate to 9.0. This backup rate is approximately 3 BPM less than the median respiration rate recorded on the machine and allows ample opportunity for spontaneous breathing, but will trigger IPAP to queue a breath when needed. This is a simple explanation, and we can certainly get into more detail, but I'd like to see you implement this as a trial and report back on results and comfort.

[sawinglogz]

Now that he’s getting conflicting advice, we should probably resolve it, since I imagine he’ll ask before proceeding.

Your recommendation for 9 bpm sounds fine to me, though I don’t remember whether you can set the Philips ASV below 10? That’ll also probably make the nighttime wakings less of a pain. If he doesn’t like the low fixed rate, he can try auto.

I also agree with reducing the PS range, but given his feelings of suffocation, I suspect his PSmin is too low. @Sleeprider, what do you think about PSmin=4, PSmax=7?

[SenatorBirch]

Hi sawinglogz

I've been away a while.  My son is still (and often is) in a bit of a precarious physical/mental place, so we haven't done anything with machine settings yet.
You asked about the 'drug malfunction' that I mentioned below, so here's some clarification.

Short version: the two (SDB and drug issue) are not directly related in a causal way - however, each condition makes treatment of the other problematic, and each condition may exacerbate the other.

Long version:

The SBD was diagnosed about 8 years ago, and my son used CPAP for a year or so, and then ASV since then.

The drug thing happened in Dec 2020. My son woke one morning experiencing severe vertigo, which was attributed to a viral ear infection.  (This is a typical diagnosis; it's the presumed cause once you rule out the most common cause, misaligned crystals in the inner ear.)  But more seriously, he experienced a bizarre and alarming phenomenon - a severe, debilitating sense of fear, dread, doom etc. (He's had occasional panic attacks - it wasn't that).  Caused him to be nearly suicidal.  (It sounds like severe akathisia, but not the kind that causes movement.)  He eventually figured out that it was related to a drug (Remeron) he started taking, to help him fall asleep all those years ago, when he began CPAP treatment.  In December the drug just seemed to turn 'poison' on him.  It was almost as if he got a shot of adrenalin every time he took it. (He went days without sleep before figuring it out.)  He cut the dose drastically, fairly quickly, out of necessity, and he is currently tapering off the remainder very slowly.  He still experiences waves of this phenomenon, every few weeks.  These are so bad that he does not want to be alive.  No one seems to be able to help him.

So when I say they are related, I don't mean in  causal way.  He believes that Remeron causes him to be much more aware of his nighttime breathing problems.  He dreams of (and wakes to) suffocation every night.  Before starting Remeron, he wasn't aware of it.  (Remeron increases REM, and that may be why he is more aware of this in his dreams).  This effect seems worse since Dec 2020.  So the drug problem has really amplified the effects of the SDB.  But a bad night's sleep (which is often caused by the SDB), often seems to trigger one of these severe waves.  He is afraid that tinkering with ASV settings will disrupt his sleep and trigger a wave; so it's not just a matter of "oh you'll have a bad night's sleep, then you can switch back or try something else".  These waves/episodes are horrific.

So SDB makes the drug effect worse - and the drug effect makes the SDB worse.

(By the way - an additional layer on top of all of this is that he has non 24 hour sleep disorder - his sleep schedule slips by about a couple of hours every day.  This makes medical appointments difficult to make, and in particular, a polysomnography is REALLY difficult.)

Anyway - your comment about flying half blind is a fair one.  This info probably doesn't change your recommendations re the config and settings on his ASV, but it does of course change how my son would proceed in implementing them.

he had a bizarre prescription drug "malfunction" in Dec 2020 which has turned life into a living hell.  That and the SDB are tangled up together.

Would you be willing to share what that malfunction was? Is that when the SDB started? If you think it's related to the SDB, we're flying half-blind without knowing more.

[SenatorBirch]

Hi folks. I have not posted since JUNE 2022. Back then, my son had the backup rate turned off because he could not tolerate it. Recently he turned it back on.
I don't know much about this stuff, but it looks like that got rid of the "clear airways", which I believe is essentially central apneas, if I'm not mistaken.
So his AHI is down a lot from Jun 2022.
However, he is still miserable (worse, in fact, than last year). When he was originally diagnosed with UARS nearly a decade ago, he had NO issue with central apneas. We believe they are treatment induced.
All this is to say that, with centrals set aside, he is back more or less to where he was before starting treatment. Removing centrals was not a victory of the ASV - all we've done is remove the problem that the ASV introduced.

In any case, I'm wondering if anyone can have a look at this new data and offer some insight.
Thanks

[Lucky7]

Is Remeron still in the picture?

https://psychopharmacologyinstitute.com/...ght%20gain.

ETA: https://academic.oup.com/sleep/article/3...ogin=false

However, they don't recommend using it due to sedation and weight gain (which could quite easily make OSA worse).

[SenatorBirch]

Actually, he is down to a negligible amount of remeron, ie 1mg at bedtime. I have been cutting and filling his pills now for over a year. He is not quite ready to go off it entirely.