BIPAP AUTO-SV SETTINGS HELP

What Banned is suggesting is an example of taking complete control for yourself which is best done when you can live with the consequences and
have the measurement tools in place to analyze the outcomes.

The wise heads advice is to stay with what is working. But it is a free world & we are all hopefully mature enough to make choices for
ourselves. Most folk who come here do so to learn & experiment. And, hopefully can live with the choices they make.

However, I stand by the advice that says stay with what is already good

DSM

I sure do appreciate all the responses.I think I will leave things just the way they are until Doc may say change them.Here is my Data summary for the month of November 2009...

Average Peak IPAP Pressure 19.6 cm H2O
Average Percent of Night in Periodic Breathing 0.4%
Average Breath Rate 17.1 bpm
Average Tidal Volume 521.9 ml
Average AHI 2.5(with the smartcard on Respironics Auto SV)
Average Peak Flow 34.3 lpm
Average Apnea Index 0.8
Average Hypopnea Index 1.7
Average Leak 48.3(better since I got the softgel and the cpap cap with Chinstrap)


Wes

wacyone wrote:I think I will leave things just the way they are until Doc may say change them.

Didn't mean to scare you, is it my hair?

Banned wrote:

wacyone wrote:I think I will leave things just the way they are until Doc may say change them.

Didn't mean to scare you, is it my hair?

Banned, Maybe it was the 'hairy' suggestion

That kind of experimenting is best done with full home data measurement (software card-reader SpO2 probe), at least

DSM

Scuse me if this post comes across as me preaching (as it is just what it is) (it is unrelated to Banned's posts)

We live in an interesting world. Ever since one man designed something to meet a need or purpose, others have taken the device & found extra uses for it that often the designer never thought of, never intended or emphatically might have said "that can't be done !".

There are many examples in life where people have extended the use of a tool or device. It is done repeatedly.

I can think of some examples where the designers would have been a bit horrified at what the users were doing with an invention. One really dramatic example is how Huey pilots in Vietnam found they could instantly clear landing zones in light scrub using the helicopters rotor blades like a giant buzzsaw. The logistics general-in-charge in Vietnam was horrified at what the pilots were doing (think FDA ). The designers of course pointed out that the blades were very thin aluminum fitted over a honeycomb substructure that was never designed to hit bushes & small saplings. The choppers often got back to base a bit messed up from the maneuver. The tactic saved a lot of lives (some may be among us here) & the pilots didn't worry at all as to if the designers didn't approve. The field commanders often bawled the pilots out while patting them on their heads & giving them medals.

But moving on from that example. The designers of cpap machines also (with medical indemnity etc: in mind + FDA hawks watching) have to be very cautious as to what purpose they say a machine is designed for. Now does this mean that users can't find great success by using a cpap machine differently from what the vendor/designer says it was sold for ? - if a user finds he can clear landing pads with it is this the wrong thing to do ?

Just some thoughts.

DSM

JohnBFisher wrote:

-SWS wrote:... viewtopic.php?f=1&t=46945&p=427430&#p427430
And while John mentioned that his PSG team did not spot any CompSAS events during his sleep study, there seem to be some disease-unique pathogenic factors that still manage to bring John to some pathophysiological commonality with CompSAS/CSDB. ...

There was one mixed apnea.

I'm fairly certain you already know this, John... So this information is for the brand spankin' newcomers: while a "mixed apnea" has both a central and obstructive component, that single-event characteristic is not at all what "CompSAS/CSDB" refers to. A "mixed apnea" is a single clinical SDB event that most often starts out central and then turns obstructive. Most people who have "mixed apneas" probably do not have "CompSAS/CSDB". And many people with "CompSAS/CSDB" don't have any "mixed apneas".

Here's where the confusion often enters: "CompSAS/CSDB" is a sleep-related breathing disorder that is said to have both an obstructive and central component as well. But that doesn't refer to a dual-component requirement for the individual events. Rather it refers to the overall nightly distribution of SDB events being comprised of both central event types and obstructive event types---and quite often mixed event types as well. There are additional CompSAS/CSDB diagnostic criteria. That criteria tends to evolve since sleep medicine is still trying to improve both diagnosis and treatment methods.

JohnBFisher wrote: I often experience shallower and shallower breathing until it leads to a full apnea. It is not just a sudden and full central apnea.

I'm not sure what your pattern looks like, but that description sounds vaguely similar to what happens in CompSAS/CSDB cases. However, you described progressive biological undershoot culminating in central apnea. The CompSAS/CSDB pattern typically intersperses initial breathing overshoot as well as subsequent undershoot---with highly cyclic oscillatory characteristics regarding that unsteady tidal-flow volume sequencing. And quite often that recurring sequence culminates in one or more central apneas.

Sleep onset central apneas are yet another thing you have in common with typical CompSAS/CSDB presentations. However, your sleep onset central apneas might present very differently than what your doctor typically observes in cases of CompSAS/CSDB. Clearly, you differ with most CompSAS/CSDB cases in that your SDB complexity is not a function of initial failure to adapt to CPAP. So while you might have at least some pathophysiology in common with typical CompSAS/CSDB, your pathogenesis clearly differs, John.

An interesting white paper comparing obstructive and central pathogenesis: http://ajrccm.atsjournals.org/cgi/conte ... 72/11/1363

Banned more or less wrote: Even if it ain't broke... lemme try and fix it anyway!

-SWS wrote:... I'm fairly certain you already know this, John... ...

Thanks for confirming my understanding of what I had read. I had not meant to imply that one mixed apnea a diagnosis of "CompSAS/CSDB" makes. I recognized that one mixed event was just the juncture between two issues I appear to have.

The obstructive sleep apnea runs in my mothers family. I am pretty certain cardiovascular complications from untreated obstructive sleep apnea was the cause of my grandfathers early death.

The central sleep apnea appears to be growing over time. I clearly have symptoms of problems with the cerebellum and issues with my autonomic nervous system. The central apnea (waking and asleep) as well as dysregulation of the normal sleep cycle (as the spontaneous arousals seems to indicate) are just two of the most recent examples.

-SWS wrote:... So this information is for the brand spankin' newcomers ...

Shoot, even an old timer appreciates a good explanation. I've read and reread articles. You concisely explained the differences. I certainly appreicate it.

-SWS wrote:... However, you described progressive biological undershoot culminating in central apnea. The CompSAS/CSDB pattern typically intersperses initial breathing overshoot as well as subsequent undershoot --- with highly cyclic oscillatory characteristics regarding that unsteady tidal-flow volume sequencing. And quite often that recurring sequence culminates in one or more central apneas. ...

In my case there appears to be no real overshoot effort. I just stop. Often I resume breathing with no overshoot. Just a fairly normal breathing rate. As I sit here typing this, I am doing that. I take a deep breath, then resume breathing normally for a while. I stop monitoring it and my breathing goes shallower and shallower, stops, take a deep breath, repeat. Unfortunately while asleep the apnea can last for quite a long time. As I've noted my BiPAP unit would turn off automatically. The algorithm of the unit would assume no one was wearing the mask, since there was no respiration. Even after I disabled the Auto Off feature, my body / brain would kick me with a shot of adrenaline. I awaken with an instant fight or flight response. Heart racing. I try to calm myself and go back to sleep. Over and over and over again. I would not wish this on anyone!

-SWS wrote:... So while you might have at least some pathophysiology in common with typical CompSAS/CSDB, your pathogenesis clearly differs ...

Exactly. I am fairly certain that several factors led my neurologist / sleep specialist to conclude this is due to dysregulation of breathing as a result of the Sporadic Olivopontocerebellar atrophy (OPCA). It might actually indicate my diagnosis might be better lumped under Multiple Systems Atrophy (MSA) than just Sporadic OPCA. Those factors? (1) Abnormal ABG and PFT results, (2) the presence of sleep onset central apneas, (3) central apneas during NREM sleep, (4) the lack of pronounced hyperventilation to accompany the hypoventilation, and (5) the CLEAR tendency for the breathing to stabilize during deep sleep and REM sleep.

My neurologist wants to reconfirm the Sporadic OPCA, but wanted to help me first attain better sleep.

-SWS wrote:... An interesting white paper comparing obstructive and central pathogenesis:
http://ajrccm.atsjournals.org/cgi/conte ... 72/11/1363 ...

Thanks. I will save and read this. I found the following interesting:

Finally, patients with waking hypercapnia primarily due to ventilatory control abnormalities (obesity hypoventilation syndrome, central alveolar hypoventilation) or neuromuscular disease may have central apneas during sleep as well. This is likely a product of the high plant gain in such patients (Figure 5A) or an absence of ventilatory drive during sleep when respiration is largely dependent on these chemical control mechanisms (63, 64).

In this case "central alveolar hypoventilation" (but not "congenital central hypoventilation syndrome (CCHS)" aka "Ondine's curse") makes sense. Though I am definitely morbidly obese, OHS does not seem to apply, since my breathing stabilizes during REM sleep. With OHS, the breathing tends to be less stable during REM sleep. For other readers, see the following disucssion of Hypoventilation Syndromes:

http://emedicine.medscape.com/article/304381-overview

My neurologist had iniitially mentioned Ondine's Curse (CCHS) or Pickwickian Syndroms (OHS), but dropped OHS after the sleep study indicated better respiration during REM sleep. Not that he feels I inherited CCHS. The "Sporadic" in "Sporadic OPCA" indicates this does not appear to be an inherited disorder. Also, my sleep fell apart AFTER I had lost almost 40 pounds not after I had gained weight. Now with better sleep I will be able to drop the weight again.

So, I will start working with this neurologist to pin down my neurological issues. Sporadic OPCA is essentially a "holding pattern" diagnosis. We know something is wrong. We know where I have problems - based on the symptoms. We just don't know quite yet which direction it will ultimately head.

And I started to work with him to document the potential need for Long Term Disability, since I also have other issues that reduce my ability to function adequately in my job. I have more and more problems with sensory input overload. This disables my ability to function in busy environments (offices, airports, etc.). So, I will be exploring this more to see what I can do to manage the situation.

As of my conversation with the sleep center, this morning it looks like I am a good candidate for a Bipap Auto-SV. I will know for sure in a week or so.

Patrick A wrote:As of my conversation with the sleep center, this morning it looks like I am a good candidate for a Bipap Auto-SV. I will know for sure in a week or so.

Sorry you had to join the crowd. I can say this machine was an absolute God-send for me. The stress on my cardiovascular system would have probably killed me before too long. I *feel* so much better, it is rather like when I first had my CPAP. In fact, I actually just want to go back to sleep and enjoy the experience!!!

Either way, I sure hope your therapy provides successful results for you!

Well I just talked to the Sleep Study center again. I am now waiting for a call from the RT that's doing the report. the manager of the Sleep center told me that they did use a BiPap Auto-sv and that they finally got the machine to Maximum pressure. Also that I had an average setting 27cm in Ipap on the auto setting. and a 16cm on the epap, so I guess I have to get a new machine.
They did say that the prescription they were going to write would only for a Bipap Auto SV type machine. And they would not have to send me to Apria Ripoff. They specifically said that they would write the prescription for the machine I used and I would get that machine only.
So let's see what they do.

Patrick A wrote:... Well I just talked to the Sleep Study center again. ... They specifically said that they would write the prescription for the machine I used and I would get that machine only. ... So let's see what they do. ...

I've found over the years it is very important to talk with the Sleep Center folks. It helps avoid a lot of problems, shows you are interested in the results and have some preferences. They usually take that into account. I've also had them quiz me about how I felt. Though they normally don't like to talk in detail until they've talked with the doctor, it is amazing how much it helps if you show interest in their work.

Here's hoping things go well for you!

Patrick A wrote:Well I just talked to the Sleep Study center again. I am now waiting for a call from the RT that's doing the report. the manager of the Sleep center told me that they did use a BiPap Auto-sv and that they finally got the machine to Maximum pressure. Also that I had an average setting 27cm in Ipap on the auto setting. and a 16cm on the epap, so I guess I have to get a new machine.
They did say that the prescription they were going to write would only for a Bipap Auto SV type machine. And they would not have to send me to Apria Ripoff. They specifically said that they would write the prescription for the machine I used and I would get that machine only.
So let's see what they do.

Patrick

Pleased to hear you are getting good attention.
Those sure are some pressures

What mask do you use to tame it ?

Cheers

DSM

Patrick, did your clinicians ever get around to describing why they chose BiPAP autoSV? I'm wondering if there's a central apnea component and/or periodic breathing component that the BiPAP autoSV takes care of for you.

Alternately, if you need a pressure-adaptable BiLevel to: 1) ventilate a much more gradual hypoventilatory tendency, while 2) also addressing upper airway obstruction, then AVAPS might have been an even better automatic BiLevel algorithm to consider:

http://sleepdevices.respironics.com/

Patrick A....seeing your pressures and no way am I an expert but I think you will have to go to the Respironics Auto SV.That is the unit I have and they told me the reason I had to go with Respironics is their pressure goes to 30 cm were as Resmed tops out at 25 cm.My Max IPAP is 30 cm with a Min IPAP of 15 cm.

Wes

wacyone wrote:Patrick A....seeing your pressures and no way am I an expert but I think you will have to go to the Respironics Auto SV.That is the unit I have and they told me the reason I had to go with Respironics is their pressure goes to 30 cm were as Resmed tops out at 25 cm.

That's my hunch also... since Patrick's current model also tops out at 25cmH20 IPAP.

However, there are fixed BiLevel machine models that can deliver 30cmH2O. They seem to be after an algorithm that can automatically adjust IPAP. If they want an IPAP that automatically adjust to short-cycle central problems, then a BiPAP autoSV is probably fine. But if they REALLY want an algorithm that automatically adjusts to a much more gradual hypoventilatory tendency, then I have to ask why AVAPS was not considered.

In summary, as an "involved" patient I would very politely ask exactly what they are attempting to address with that automatically varying IPAP.