Why doesn't APAP respond to apneas?

-SWS wrote: Turning BPM from auto to manual means that you need to know not only the correct spontaneous breath rate, but just as importantly the correct pulse width or time that should be spent in inspiration. We can see on Bev's Encore charts a larger than acceptable spread between manual backup BPM of 10 and Bev's spontaneous machine-affected breath rate of 16.1 (now higher than before). We have absolutely no way of knowing how counterproductive the manual inspiratory time setting of 1.2 happens to be.... it's a blind guess also for lack of PSG instrumentation. And to continue making adjustments to manual BPM and manual IT short of a PSG simply flounders around in blind pilot mode IMO.

Those values are available on the fly right on the LCD in monitor mode, but it is better to use an avg from the report if you have it except IT is not displayed on the report, so LCD is only place you will find it outside of the lab.

-SWS wrote: Snoredog's rationale, so far, for turning auto BPM off has been to get at that alluring but mysterious inspiratory setting of 1.2 seconds. He's not sure specifically why it shows up in literature so much, but the fact that it does apparently lends a measure of promise. The PSG titration charts recommend IT of 1.2 as a starting point for routine manual titration by clinicians who have PSG equipment to closely follow all the effects of manual titration changes. Snoredog's been wanting to try that alluring and mystical 1.2 second IT setting ever since he first laid eyes on it.

Let's get this straight, I suggested on page 2 of this thread that she stay on Aflex and probably wouldn't see any improvement going to the SV. Think it may even be right next to your post with the URL to cpapauction.

And it is NOT my rationale at all, it is mfg protocol for the machine of which Bev has a hardcopy of, follow the decision tree it tells you to use those settings. Those are "Minimum" settings so even the mfg thinks they are okay or they wouldn't have established a recommended minimum.

You only got 16.1 avg BPM from last night's report, it is shown lower on prior Encore reports, but I realize it is much easier to criticize someone's suggestions after the fact, I guess if you want to play that game we could say the same thing about buying the SV only that she'd still have $1500+ left in her wallet.

-SWS wrote:
I think these experiments might have been better controlled if they were baselined and incremental. The more I think about it, the more I think shotgun changes are not the way to go. PSG certainly is the way to go. I would personally at least like to see those CPAP and BiLevel baseline measurements that should have been the experimental front-end before introducing small controlled deltas.

Shotgun approaches? if you haven't already edited it out (yeah we know about that bookmark game) as I recall for initial settings I wanted EPAP at 9 cm (her first night Encore on the SV) and you wanted it at 14 cm. My reasoning was I think they missed her titration and hand gone over the hill, but desats from her PSG said don't stay there too long.

So the next night we used your settings of 14 cm, and the next night were the same. Periodic Breathing showed up where there was none the first night. You think 2nd and 3rd night were better? I'd argue that, she hasn't had a 2 hr stretch yet on that machine I'd call good.

Hey all shotgun approaches remaining are yours, I thought my settings were pretty conservative from the beginnning after all you argued why we wanted to use the 9 cm EPAP settings (where she actually did the best IMO). I suggest she go back on Aflex, AHI is AHI and using that machine she has the lowest seen, if that AHI includes central events she's doing even better.

He's a box of bird shot, have at it.

OutaSync wrote:Are you guys telling me that I just bought a real expensive door stop?

Bev

it's too noisy to be a door stop

Nah hang in there, SWS will prove himself right.

OutaSync wrote:Are you guys telling me that I just bought a real expensive door stop?

Wanna do a trade? My 420E for your .... I don't even know what your machine is it's so complicated.

Sorry to detract from the conversation. Hope you get it sorted out, as soon as all the cooks can agree to one recipe

StillAnotherGuest wrote:I see no reason to wait, and would go back to your original settings (APAP 14 - 17 cmH2O), because:
1. I don't think prolonged time at 14 cmH2O is the correct choice because you'll end up leaving those persistent events (which my guess are REM-related obstructive apneas)(of course, you would need NPSG to confirm this) on the table.

Recall that she started the thread because she experienced those persistent events at APAP 14 - 17 cmH2O. APAP wasn't doing anything for those but just sitting there at 14 cm anyway. I'm missing the logic here.

2. I think you already have plenty of data on those baseline settings. That AHI is to die for.

She has no clue what her night-to-night variability happens to be regarding BPM, volume, even PB. Might as well have a sustained look at these new data parameters. If anything out of the ordinary crops up, she's got data that she and her doctor can use to justify investigation via PSG.

3, I really don't see anything interesting coming out of prolonged monitoring in terms of respiratory values.

Short of a crystal ball, I don't see how can that projection be made. Measuring those parameters at 14 cm is not inherently risky. Wild SV dial winging admittedly is.

4. That data would be academic anyway because I think it's quite clear what your settings should be.

To mitigate AHI only. But that's clearly not adequate since there are other issues looming in pathophysiology. But I also favor the theory that unmitigated pain may be Bev's primary contributor of non-restorative sleep.

5. There is a school of thought that says that CSDB will resolve with acclimatization, and if that's the case, then these aggressive approaches may destabilize this (although I'll admit that the 14 cmH2O across on the SV proposed now is benign).

I think that's a recurrent observation more than a school of thought. But that observation speaks of AHI and not necessarily outstanding RDI/awakenings, excessive C.A.P. etc. And I also agree about that caution against aggressive experimental approaches at home.

6. I really like what the pregabalin might do for the awakenings (Hindmarch 2005 showed 9.18 awakenings on pregabalin vs 27.10 on withdrawal night), and that's what I'm curious to see.

If Bev gets lucky with that experiment we may not get to see a withdrawal.

7. However, if the pregabalin does not improve sleep quality, then you run risk of compounding the sleepiness and/or fatigue. So my guess is that results (either positive or negative) should appear quickly.

If pain mitigation itself lends promise, then she may have to trial for at least a couple/few weeks. At least that's what my neurologist mentioned about mitigating trigeminal neuralgia pain. I'm thinking gradual time frames for mitigation of myofascial pain may be similar to TN.

8. And boy, you have a lot of N. symptoms, so I'm also really hatin' dial wingin' in this case just trying to pick up 1.2 AHI.

It really never had to do with picking up an AHI of 1.2. It had to do with exploring yet other possibilities, since her doctor kept telling Bev that her devastating daytime EDS and poor cognition represented excellent treatment! After all, he couldn't see the point in anything being wrong at all since her AHI was a hunky dorey 1.2. Great treatment all around!

Rather it really had to do with exploring yet other phenotype or disorder possibilities. In the case of trialing SV, it was never an exercise in reducing AHI. It was an exercise in exploring the possibility of whether fine respiratory-controller oscillations may be present---and if so, symptomatically gauging whether countering them might yield any improvement. That really is best done in a lab----but with a lab team that can look at Bev's central emergence on BiLevel and say, "Hmmm.. just maybe an AHI of 1.2 is not such a definitive and wonderful benchmark after all. Maybe that central emergence and those extremely wild apnea spikes in relation to non-LL leaks (pressure variations) describe a sleep-disturbance problem unrelated to standard OSA and unrelated to narcolepsy."

If Bev has narcolepsy, then she has not one or two, but three sleep/wake problems going on in pathophysiology. However, if Bev has nothing more than excessive RDI and/or excessive awakenings unrelated to narcolepsy, then she also happens to have perfectly correlated symptoms of EDS and cognitive impairment that have absolutely nothing to do with narcolepsy.

Lyrica's a great trial IMO. Going into the lab for another PSG/MSLT assesment of CompSA/CSDB and narcolepsy is a great idea IMO. Continuing the home-based SV data collection at two relatively safe baselines is a great idea IMO (unless 14/17 BiLevel is biologically uncomfortable). Continuing wild SV guesses and dial winging is a rotten idea IMO. A baselined, incremental, and much better controlled home-based SV experiment is a mediocre idea IMO. Going back to APAP 14 - 17 cm and doing absolutely nothing more is the worst idea imaginable IMHO.

Best regards, Bev! Please do whatever you think is correct.

-SWS wrote:

StillAnotherGuest wrote:I see no reason to wait, and would go back to your original settings (APAP 14 - 17 cmH2O), because:
1. I don't think prolonged time at 14 cmH2O is the correct choice because you'll end up leaving those persistent events (which my guess are REM-related obstructive apneas)(of course, you would need NPSG to confirm this) on the table.

Recall that she started the thread because she experienced those persistent events at APAP 14 - 17 cmH2O. APAP wasn't doing anything for those but just sitting there at 14 cm anyway. I'm missing the logic here.

2. I think you already have plenty of data on those baseline settings. That AHI is to die for.

She has no clue what her night-to-night variability happens to be regarding BPM, volume, even PB. Might as well have a sustained look at these new data parameters. If anything out of the ordinary crops up, she's got data that she and her doctor can use to justify investigation via PSG.

3, I really don't see anything interesting coming out of prolonged monitoring in terms of respiratory values.

Short of a crystal ball, I don't see how can that projection be made. Measuring those parameters at 14 cm is not inherently risky. Wild SV dial winging admittedly is.

4. That data would be academic anyway because I think it's quite clear what your settings should be.

To mitigate AHI only. But that's clearly not adequate since there are other issues looming in pathophysiology. But I also favor the theory that unmitigated pain may be Bev's primary contributor of non-restorative sleep.

5. There is a school of thought that says that CSDB will resolve with acclimatization, and if that's the case, then these aggressive approaches may destabilize this (although I'll admit that the 14 cmH2O across on the SV proposed now is benign).

I think that's a recurrent observation more than a school of thought. But that observation speaks of AHI and not necessarily outstanding RDI/awakenings, excessive C.A.P. etc. And I also agree about that caution against aggressive experimental approaches at home.

6. I really like what the pregabalin might do for the awakenings (Hindmarch 2005 showed 9.18 awakenings on pregabalin vs 27.10 on withdrawal night), and that's what I'm curious to see.

If Bev gets lucky with that experiment we may not get to see a withdrawal.

7. However, if the pregabalin does not improve sleep quality, then you run risk of compounding the sleepiness and/or fatigue. So my guess is that results (either positive or negative) should appear quickly.

If pain mitigation itself lends promise, then she may have to trial for at least a couple/few weeks. At least that's what my neurologist mentioned about mitigating trigeminal neuralgia pain. I'm thinking gradual time frames for mitigation of myofascial pain may be similar to TN.

8. And boy, you have a lot of N. symptoms, so I'm also really hatin' dial wingin' in this case just trying to pick up 1.2 AHI.

It really never had to do with picking up an AHI of 1.2. It had to do with exploring yet other possibilities, since her doctor kept telling Bev that her devastating daytime EDS and poor cognition represented excellent treatment! After all, he couldn't see the point in anything being wrong at all since her AHI was a hunky dorey 1.2. Great treatment all around!

Rather it really had to do with exploring yet other phenotype or disorder possibilities. In the case of trialing SV, it was never an exercise in reducing AHI. It was an exercise in exploring the possibility of whether fine respiratory-controller oscillations may be present---and if so, symptomatically gauging whether countering them might yield any improvement. That really is best done in a lab----but with a lab team that can look at Bev's central emergence on BiLevel and say, "Hmmm.. just maybe an AHI of 1.2 is not such a definitive and wonderful benchmark after all. Maybe that central emergence and those extremely wild apnea spikes in relation to non-LL leaks (pressure variations) describe a sleep-disturbance problem unrelated to standard OSA and unrelated to narcolepsy."

If Bev has narcolepsy, then she has not one or two, but three sleep/wake problems going on in pathophysiology. However, if Bev has nothing more than excessive RDI and/or excessive awakenings unrelated to narcolepsy, then she also happens to have perfectly correlated symptoms of EDS and cognitive impairment that have absolutely nothing to do with narcolepsy.

Lyrica's a great trial IMO. Going into the lab for another PSG/MSLT assesment of CompSA/CSDB and narcolepsy is a great idea IMO. Continuing the home-based SV data collection at two relatively safe baselines is a great idea IMO (unless 14/17 BiLevel is biologically uncomfortable). Continuing wild SV guesses and dial winging is a rotten idea IMO. A baselined, incremental, and much better controlled home-based SV experiment is a mediocre idea IMO. Going back to APAP 14 - 17 cm and doing absolutely nothing more is the worst idea imaginable IMHO.

Best regards, Bev! Please do whatever you think is correct.

Well, I would like to reply...

OutaSync wrote:Are you guys telling me that I just bought a real expensive door stop?

Bev

The AutoSV may not be the right magic for you Bev. It's targeted for CompSA/CSDB, central dysregulation, and can even be used for OSA. That doesn't mean everyone's physiology will take well to it. And it doesn't say that your attempted settings so far were even close to being right.

So far there's absolutely no reason not to collect a week's worth of BPM, PB, and volume data on CPAP@14cm. And I'd even collect baseline data at 14/17 BiLevel (unless that latter modality proves uncomfortable or disruptive). If it were me I probably would even consider another incremental trial with SV modality using the results from those baselined measurements. I'd prefer doing that one in the lab, but I'd do it at home rather than not do it at all if it were me.

We have yet to come close to seeing what the Respironics FAQ suggests by the way of settings. Treatment by committee eroded the manufacturer's recommendations away.

If/when you decide that you don't need that machine, your experiment cost is $2k minus auction selling price. And that cost will have yielded all avenues avidly discussed/explored in this thread.

OutaSync wrote:Since I went to bed before I saw SWS, Ozij and SAG's responses, I used Snoredog's suggestion and this is the result:



It took me awhile to get to sleep, even with the melatonin and the Ambien. There were a few times when the machine puffed at me when I wasn't finished exhaling. I had to get up a couple of times to let the air out of my stomach, and woke up with a headache.

Bev

Bev,

Just looking at your chart, it is a vast improvement over your earlier ones. The obvious aspect to me is that the PS is not spending all its time at max and the patient triggered breaths data is not all over the place as it was in all earlier charts. AND there is the fact that the machine was running as CPAP rather than Bipap mode. Interesting. Backs up the comments of those who argued that Bilevel therapy may be behind much of your erratic patterning. Your BPM and tidal flow seem very much less erratic, in fact not erratic at all.

This direction may have been a good start.

DSM

#2 Just to put a spanner in the works, I'd use the same settings but up IpapMax by 2 CMs - am of the opinion the data will get even better.

I am sorry that there is so much contention over what you should do - it is making us look a bit silly

DSM

SAG wrote: Well, I would like to reply...

Sorry, SAG. I wasn't trying to quell anybody's response. Hope I didn't come across that way.

dsm wrote:

OutaSync wrote:Since I went to bed before I saw SWS, Ozij and SAG's responses, I used Snoredog's suggestion and this is the result:

<snipped>
It took me awhile to get to sleep, even with the melatonin and the Ambien. There were a few times when the machine puffed at me when I wasn't finished exhaling. I had to get up a couple of times to let the air out of my stomach, and woke up with a headache.

Bev

Bev,

Just looking at your chart, it is a vast improvement over your earlier ones. The obvious aspect to me is that the PS is not spending all its time at max and the patient triggered breaths data is not all over the place as it was in all earlier charts. AND there is the fact that the machine was running as CPAP rather than Bipap mode. Interesting. Backs up the comments of those who argued that Bilevel therapy may be behind much of your erratic patterning. Your BPM and tidal flow seem very much less erratic, in fact not erratic at all.

This direction may have been a good start.

DSM

Thanks, I was starting to get a complex there for a minute, while there is NO PB seen on last night's report, that is what I wanted to see, but still not a very good report in my eyes, too much activity seen with pressure swings. I don't think backup settings had much to do with that result, if anything they had more to do with reduced the time in backup mode.

If you look at avg. BPM on the report she only touched that lower BPM=10 setting 1 time. Her avg. peak is lower at 24ml compared to her 1st night of 28ml (not what I wanted to see), her avg. BPM is higher at 16.1 compared to 14.6 from the first night aslo not what I wanted to see. The limiting of IPAP Max most likely prevented the machine from bringing that peak back up.

Interesting she can handle CPAP pressure to 17 cm on the Aflex and not that on IPAP. Maybe she falls under this category:

http://www.chestjournal.org/cgi/content ... 128/4/2141

about the headache highlighted by me, hypoxia leads to cerebral vascoconstriction, the result of that is a migraine headache.

Snoredog, buddy. No criticisms... Rather it was exactly as you said: opinions cemented using observations after the fact. The 1.2 was a reasonable experiment given that avenue of approach. So I was really humorously chiding. Since when don't we do that?

The SV may not be right for Bev. Then again, after some BiLevel acclimation and with the correct SV settings, that machine might be perfect for Bev. I disagree with completely pulling the plug on the SV trial. But I think Bev should first baseline with both CPAP and BiLevel before deciding. There's absolutely no reason to rush through either experimenting or pulling the plug IMO.

Using the SV trial data we have so far in conjunction with some solid CPAP/BiLevel baseline data should yield some interesting and potentially useful observations at the very least. We need a good known BPM value. We also need a good known volume value. That's the purpose of getting a good baseline. Also noting how much variability needs to be factored in when assessing any one night's results. Baseline. Where's the rush, guys?

dsm wrote:I am sorry that there is so much contention over what you should do - it is making us look a bit silly

That's probably the best reason of all to quit the SV experiments. It's impossible for Bev to go in all six suggested directions at once.

This post is an attempt to identify what does not help Bev.

1) The BPM=Auto *combined* with PS
may well be causing much of the earlier mayhem. I say this based on the way the SV works when trying to track BPM when it is set to AUTO. I am thinking that those settings created much of Bev's instability in the earlier charts.

The idea to try BPM=10 has made a big improvement (or even BPM=off which removes all attempts to adjust rate) - just what the INSP should be I can't say - I would have thought 1.2 would speed up Bev's respiration & I think that is what may have happened.

2) Setting epap low may have contributed to apparent centrals.

The way the machine is set in the latest chart, shows that PS gets triggered regularly & in the majority of situations seems to be doing what it is intended to.
Would Bev's headaches be related to the BPM she is at ? - her tidal volume is not excessive by any means.

DSM

Bev,

Re the Bipap AutoSV.

As machines go this is on super sophisticated device that has an enormous range of settings and can cover the widest variety of xPAP types of any box on the market.

These aspects of it make it both a boon and a burden. It is a boon to the experimenter because there is so much to explore in how it works. It is a burden for someone who is relying on others to get it set up right. In your case, you don't have garden variety vanilla variants of OSA or CA and so your set up was and will be challenging. Having several of us all opining on how you should go about it is counter productive - you really need to care & protection of one committed RT who is familiar with the concepts of the SV and can relate its special capabilities to your particular respiratory challenges.

I don't know how we as a team can simplify the process of exploring the machine and what it can do for you. I am inclined to step back in an attempt to reduce the clutter but naturally having had such a positive experience with the SV and because I can see it is able to run in just about any mode, am certain it can be tuned to your needs. At this time though we need to be giving you some consistency. How - don't know just yet

DSM

Before suggesting any more SV settings for Bev to try, can we get a discussion going about what Bev's spontaneous breath rate should be and how we arrived at that value/target for later comparison? The same question for volumes. What spontaneous target volume are we judging/comparing against and just how did we arrive at those values?

So far those comparison values seem to be vague/missing or perhaps concretely derived by guessing or logic---which is extremely failure prone already in threads like this. Unless I'm missing a post with some BPM and volume measurements free of dysregulation, I don't see how SV treatment can be targeted let alone comparatively evaluated after each change.

Virtually all of science relies on baselined values. No?

-SWS wrote:Before suggesting any more SV settings for Bev to try, can we get a discussion going about what Bev's spontaneous breath rate should be and how we arrived at that value/target for later comparison? The same question for volumes. What spontaneous target volume are we judging/comparing against and just how did we arrive at those values?

So far those comparison values seem to have been derived by either guessing or logic---which is extremely failure prone already in threads like this. Unless I'm missing a post with some BPM and volume measurements free of dysregulation, I don't see how SV treatment can be targeted let alone comparatively evaluated.

Virtually all of science relies on baselined values. No?

Good starting point.

1) One value we need is Bev's typical BPM without there being any machine influencing factors such as PS or backup rate or auto-adjustment rate.
We could get that by setting BPM=off

2) Set the machine in CPAP mode as already suggested and stick with the CMs set to 14 based on it delivering consistenly better results - then we
are looking at Bev's baseline reaction using the SV's better data reporting capability

3) Don't use PS yet until we have a night or two on this same machine, in CPAP mode & no timed mode

Add to this what we think we should be seeing in the data for Bev based on what we know of her weight height etc:
a) Peak Average Volume
b) Tidal Flow
c) breathing rate

Agree on wht meds Bev should be on

DSM

Doug, does the ramp button also function when automatic PS mode (SV) is enabled?