CPAPtalk.com

archangle wrote:

justinjustin wrote:Sludge is quite consistently an asshole on this board to almost everyone, I wouldn't take it personally. I don't really understand why he comes on here except to put people down with arrogant or dismissive comments. You might notice he even deleted some other posts in this thread.

He does know his stuff, though. Especially the in depth technical stuff.

You're right there and I never denied that. He's just so abrasive, sarcastic and negative that it makes me wonder what his problem is.

Also, to be fair to him, I forgot that I had added Sludge to my ignore list, so I was wrong to claim "You might notice he even deleted some other posts in this thread" - And clicking on his response that was hidden, indeed again I see a sarcastic comment. Not regretting my move there. Back to ignoring the troll.

On to BrianinTN's issues... it's like he's mirroring my experience with the ASV. My SDB showed up clearly on the overnight study, but the ASV is failing just as, if not worse than, my CPAP/APAP experiences. I have ComplexSA / UARS, but the xPAP doesn't help and in fact makes things worse. It's so counterintuitive, especially when I've spent years controlling for other factors like sleep patterns, hormones, etc, etc, etc,

justinjustin wrote:I have ComplexSA / UARS, but the xPAP doesn't help and in fact makes things worse. It's so counterintuitive, especially when I've spent years controlling for other factors like sleep patterns, hormones, etc, etc, etc,

I should clarify that ASV performs like a champ by the numbers. Whereas the numbers sucked with CPAP and BiPAP, and were occasionally a bit iffy with the older model ASV, I've yet to have an AHI any night above 5 with this puppy. That's part of why I'm reluctantly but diligently pushing through the 90 days to get insurance to pay for it...but this is one of the most painful and low periods of my life. At least before, I could take a "break" to get rested. Here, I need to use it for 4+ hours 80% of nights or I'm hosed (no pun intended). Given that I've gone the oral appliance route AND the surgery route, I don't have many other options. (The docs ruled out Provent, as I noted earlier, and while Winx is another experimental treatment, I haven't seen much in the way of clinical data on it.)

The sleep patterns and hygiene part is a real chicken-and-egg game here. I can't get any good habits going while on the ASV. And I'm having my sleep disturbed by a sea of hypopneas when I'm not on xPAP. So unless I can figure out some way to reconcile the two, I'm going to be a long-term non-complier. And that sucks...but it's also why I desperately would like some theory on why I feel worse on ASV/BiPAP/CPAP than when I don't. I feel like an answer to that might at least start pointing me toward a solution.

My sleep doc keeps pointing toward the depression. As with the hygiene hypothesis, that doesn't make much sense to me, as it doesn't explain why I feel worse on ASV. Moreover, that's a scary yellow brick road. I've gone through most of the first and second line pharma approaches there, so we're at things like electro-convulsive therapy, or ECT (and I'm not keen on the big memory loss side effects) or TMS (which has less side effects but also lower efficacy, plus it's $12K out of pocket). And there's no guarantee that depression is even the culprit here. Maybe I'm depressed because of [X] which is causing me not to get restful sleep. The orientation of the causality strikes me as really important and perhaps under-appreciated.

OK, speech over. /gets off soap box

BrianinTN wrote:

justinjustin wrote:I have ComplexSA / UARS, but the xPAP doesn't help and in fact makes things worse. It's so counterintuitive, especially when I've spent years controlling for other factors like sleep patterns, hormones, etc, etc, etc,

I should clarify that ASV performs like a champ by the numbers.

The sleep patterns and hygiene part is a real chicken-and-egg game here. I can't get any good habits going while on the ASV. And I'm having my sleep disturbed by a sea of hypopneas when I'm not on xPAP. So unless I can figure out some way to reconcile the two, I'm going to be a long-term non-complier. And that sucks...but it's also why I desperately would like some theory on why I feel worse on ASV/BiPAP/CPAP than when I don't. I feel like an answer to that might at least start pointing me toward a solution.

OK, speech over. /gets off soap box

I hear you, my AHI is 0.2 - 2 on ASV. But here's something *very* interesting I found on another board: http://www.apneaboard.com/forums/Thread ... ion?page=3

Perhaps the algorithm is causing you arousals and it needs to be less aggressive? The explanation below makes a lot of sense to me in my own case at least as I used Resmed S9, although I see you're on PR....

"Resmed's algorithm is far more aggressive than the PR algorithm in treating FLs. And that can contribute to some people complaining that the AutoSet has a tendency to have the pressure "run away."

Quote:
I'm pretty sure that ResMed sees these patterns as being disruptive to sleep even in the absence of what would technically be called events.
Yes, there is some evidence that FL can be disruptive to some people's sleep. In fact the whole problem that folks with UARS have is that the flow limitations tend to trigger EEG arousals well before a clinical H can be scored.

And so it's all well and good to try to eliminate the FL. But---and this is an important but: Some people find those rather rapid and significant increases in pressure more disturbing to their sleep than the FL themselves. Sharp increases in pressure can and do wake some people up. And if you're prone to aerophagia all that extra pressure to eliminate the last of the FL can increase the aerophagia, which can increase the arousals, and lead to even more swallowing. Sharp significant increases in pressure can also lead to additional problems with mask leaks and also under some circumstances trigger mouth breathing in a person who otherwise breathes exclusively through their nose. And those things can cause problems with both the quality of the therapy and the quality of the sleep. And finally there's the fact that about 10% of PAPers do have some problems with pressure induced centrals.

So when a CPAP maker is designing an auto algorithm, how they decide to respond to FL is almost by definition a series of compromises. You want to increase the pressure (at least some) and see if that helps stabilize the shape of the inhalations, but you don't want the pressure increase to be so rapid and so great as to cause as many problems as it solves for the vast majority of users.

I think that's part of why PR has taken a very different route in dealing with FL. The PR machines do respond to FL by increasing the pressure by 1 cm and then they wait for about a minute, if I recall correctly. If the breathing stabilizes in that minute, there's no further increase. If more FL are detected, the machine raises the pressure another 1cm and waits another minute. It's slower to respond, but that means the pressure increase by itself is less likely to wake up or arouse the user. And PR also attempts to proactively find the best pressure even before the inhalations in the wave flow have become ragged enough to trigger a FL flag. And that proactive "search" algorithm also prevents the PR System One from lowering the pressure too far, too quickly."

Interesting. I do see some relatively rapid spikes in IPAP when looking at the data. Last night, for example, had an increase from 7cm to 20cm over the span of 12 minutes at one point. EPAP on the other hand rarely ever moves from its 4-5 cm base.

Other than lowering max IPAP/PS, I can't think of any way to make the ASV less aggressive, can you? Also, I don't even know if that's something I would want. The ASV isn't supposed to be increasing the pressure for no reason.

It's also interesting you bring up the mouth breathing aspect. Lately I've been using my ASV without a chin strap or taping my mouth shut. I just looked at my data for the first time in a couple weeks, and I notice that my AHI has been much worse of late. (Mean of 6.98 for the past week, versus 2.45 overall.) Maybe that's something worth investigating, so perhaps I'll go back to taping tonight...although I've felt lousy both with and without taping.

I tinkered two nights ago with a suggestion previously made in this thread of turning BPM from "Auto" to a manual value of 12 (and leaving Ti, the inspiration time, at the default of 1.2). It hasn't helped yet. I don't know the first thing about dial-wingin' with that stuff, though.

justinjustin wrote:He's just so abrasive, sarcastic and negative...

Well, that's what sells newspapers, sweetie!

Why do you think there's always rubbernecking at auto wrecks!

Also, the application for ASV is quite specific, and off-label use results in somewhere between minimal to no success. Consequently, when you offer

justinjustin wrote:Sludge, I meant the real story with respect to my SDB. Other sleep docs/labs actually told me they weren't certain UARS *exists* as a valid diagnosis, which is not up for debate anymore. Also I've talked to multiple patients that have a similar experience of multiple sleep studies, surgeries, xPAPs, masks, even jaw surgeries to no avail, only to finally find answers with Dr. Krakow.

Yes, I paid $900 (PSG) + 2 x $800 (titration) + $500 + 250 for my visit with Krakow. Plus $1,000 flight and travel. Plus $2,100 for the ASV.
Grand total. $6,500.

But he diagnoses ComplexSA + UARS and my treatment with ASV and his titrated settings are giving me more relief than any CPAP/APAP/BiPAP I've used.

So yeah, I'd gladly pay $5,000 more because he figured out the *real story* for me. I'm sorry you seem rather skeptical about his value, but I can offer one powerful anecdote that he provided treatment after the failure of 3 previous sleep studies, 3 sleep doctors, 2 ENTs, 2 naturopaths, endocrinologist, 3 surgeons and other medical professionals could not.

but now toss out

justinjustin wrote:I'm coming up on week #8 and it's torture. Multiple awakenings, air swallowing, fatigued all day.

I just want to make sure everybody knows that before they throw 6500 bucks down the toilet.

justinjustin wrote:Back to ignoring the troll.

Oh darn.

I'm so upset.

In re: the flow limitation thread, I believe I will take exception to the analysis (what a surprise):



Frankly, I do not see a lot of flow limitation there. And traditionally, the pressure response to FL in the ResMed algorithm has been 0.2 cmH2O, and that pressure increase is nearly imperceptable.

What would help in the analysis would be if jj1972 were to add the corresponding FL and Snore channels to see what the algorithm was basing those increases on.

ResMed: The AutoSet algorithm is truly a predictive approach allowing proactive treatment of sleep apnea rather than simply reacting with a pressure change after an event has occurred; this is achieved by detailed analysis of the inspiratory flow versus time curve. Flow limitation analysis in the AutoSet algorithm is a complex blend of clinical sleep science and engineering; it provides very small adjustments in pressure, sometimes as little as 0.2 cm H2O at a time to ensure that the patient is not aroused from sleep (as measured by EEG) with such pressure changes. This approach allows AutoSet to preemptively treat many obstructive sleep apnea events before they even occur. When an event does occur that is not possible to prevent by the flow limitation approach, AutoSet will respond reactively as well. ResMed’s AutoSet algorithm assesses the severity of the event using a blend of the inputs such as duration of the event severity and frequency of the event over time. The AutoSet algorithm then determines the optimal pressure change solution to treat the event and prevent future events and applies it comfortably with minimal disturbance to the patient’s sleep.

Further:

AutoSet responds to events based on a five-breath moving average of the inspiratory flow-time curve in order to prevent the device from responding to sporadic breathing events, such as sighs or coughs. Inspiratory flow limitation, or partial airway closure, usually precedes snoring and obstructive hypopnea and apnea events; it is also most often associated with obstructive hypopneas as they occur. AutoSet adjusts in increments as small as 0.2 cm H2O to ensure that pressure increases only as much as is necessary.

so those single "chair breaths" (and I would even challenge those as the blip is very late in the inspiratory cycle) should have been absorbed in the 5-breath moving average and discounted.

Sludge wrote:In re: the flow limitation thread, I believe I will take exception to the analysis (what a surprise):

Would you expect a flow limit to be more flat topped/square wave looking than "spiky" like this? Would it tend to be flat on both the inhale and exhale?

archangle wrote:Would you expect a flow limit to be more flat topped/square wave looking than "spiky" like this?

Correct. See the image posted by RS:

Would it tend to be flat on both the inhale and exhale?

Expiratory flow limitation is extremely unlikely in OSA (tangent to discussions on Expiratory Intolerance, Any Expiratory Flow Limitation Is Good Because It Generates AutoPEEP, Expiratory Flow Limitation Suggests A REAL Bad Thing (like an obstructing tumor), etc.).

Sludge wrote:What would help in the analysis would be if jj1972 were to add the corresponding FL and Snore channels to see what the algorithm was basing those increases on.

Cause maybe the algorithm was responding to an increase in snoring:

Snore response is measured using the severity of the vibrations of the snore. A more severe snore will give a larger pressure response, but this proportional response is delivered over the next series of breaths such that the pressure change does not disturb the sleeping patient.

Sludge wrote:

justinjustin wrote:He's just so abrasive, sarcastic and negative...

Also, the application for ASV is quite specific, and off-label use results in somewhere between minimal to no success. Consequently, when you offer

justinjustin wrote: But he diagnoses ComplexSA + UARS and my treatment with ASV and his titrated settings are giving me more relief than any CPAP/APAP/BiPAP I've used.
....
I'm coming up on week #8 and it's torture. Multiple awakenings, air swallowing, fatigued all day.

I just want to make sure everybody knows that before they throw 6500 bucks down the toilet.

apparently, there was some short term hypnosis that was part of that 6500$ expense that has now worn off.

maybe if he'd paid you 6500$ he'd say you had salvation... for a while

palerider wrote:

Sludge wrote:

justinjustin wrote:He's just so abrasive, sarcastic and negative...

Also, the application for ASV is quite specific, and off-label use results in somewhere between minimal to no success. Consequently, when you offer

justinjustin wrote: But he diagnoses ComplexSA + UARS and my treatment with ASV and his titrated settings are giving me more relief than any CPAP/APAP/BiPAP I've used.
....
I'm coming up on week #8 and it's torture. Multiple awakenings, air swallowing, fatigued all day.

I just want to make sure everybody knows that before they throw 6500 bucks down the toilet.

apparently, there was some short term hypnosis that was part of that 6500$ expense that has now worn off.

I don't understand this kind of attitude on this board.

I was clearly shown to suffer from ComplexSA + UARS on the PSG, when other labs weren't testing for UARS and said 'your AHI looks fine, so SDB isn't likely.

Then the first few nights of ASV made me feel better than ever possible with/without other xPAP.

Now that I'm experiencing difficulties with the treatment, I've wasted my money and I've been hypnotized? Even having a firm diagnosis after seeing countless other specialists in many disciplines, MRIs, etc would be worth the money.

archangle wrote:

Sludge wrote:In re: the flow limitation thread, I believe I will take exception to the analysis (what a surprise):

Would you expect a flow limit to be more flat topped/square wave looking than "spiky" like this? Would it tend to be flat on both the inhale and exhale?

I've read it's about the 'rattyness' of the flow curves. Here are my very crappy looking 'curves' that seem to fit the profile.

justinjustin wrote:I was clearly shown to suffer from ComplexSA + UARS on the PSG, when other labs weren't testing for UARS and said 'your AHI looks fine, so SDB isn't likely.

Then the first few nights of ASV made me feel better than ever possible with/without other xPAP.

Now that I'm experiencing difficulties with the treatment, I've wasted my money and I've been hypnotized? Even having a firm diagnosis after seeing countless other specialists in many disciplines, MRIs, etc would be worth the money.

what's it gotten you? maybe I'm missing something, but it sounds like after all that money, you're worse off than when you started... no?

is it really worth it to feel worse?

and, yes, maybe there was some sort of placebo effect if the 6500$ only bought you a few nights of 'better'.

maybe you shouldn't be on an asv?

maybe sludge, as much as you dislike him, has a point?

justinjustin wrote:I've read it's about the 'rattyness' of the flow curves. Here are my very crappy looking 'curves' that seem to fit the profile.

show the snore and flow limit graphs too,please.