Dr. Krakow, salesman extraordinaire? UPDATED

[Guest]

(sleep stage, body position, xPAP mode, pressure, acclimatization period, unknown knowns (like of pile of heretofore undisclosed assorted pharmaceuticals) and unknown unknowns (like LA is in the ocean (or deserves to be) and Maimonides is on top of a mountain. That could create a significant first night confound)

Calling all LISP programmers......

[SleepingUgly]

This does not bode well for my overcoming aerophagia.

SleepingUgly, could it be your blind focus on passive "solutions", and bootlicking those who make a dollar off your pain that doesn't bode well for your overcoming aerophagia?

Just a 3 am-sh sleep-deprived thought, whateverz.

Passive??! Bootlicking??! No one has ever used those adjectives to describe me!

What kind of "passive solutions" are you saying I've engaged in and what would be an example or two of "active solutions" that I haven't?

And just whose boots do you imagine I'm licking?

[SleepingUgly]

I have a big birthday coming up in less than a month, and it's important that I be cured by then.

Apparently, the Big Secret will be revealed in a couple of weeks, so try to hang on till then.

Is the Big Secret going to fix my aerophagia?? That would be the best birthday present EVER!

..could you...blow me a few xoxoxos like you did for Dori?

Sure.

oxox

This is even more shocking than being called a "bootlicker" by Mike6977 (and much higher in positive valence)!! Wow. All I can say is wow.

[ignorant1]

Dave – If you are serious about reviewing my PSG data, please PM me for contact information!

If you want to help SU, that would be great – that poor little passive boot-licker looks like she’s been holding her breath waiting for an answer. Perhaps the birthday girl should be a higher priority, since my SDB issues have been resolved. (Or maybe my data will prove otherwise???) EDIT: I should have referenced this thread before anyone thinks I am attacking the lovely SU: viewtopic/t71385/Does-SleepingUgly-dese ... iment.html

“Apparently, the Big Secret will be revealed in a couple of weeks”

Again, there is no "Big Secret". In fact, Dr. K speaks at seminars and has tried to get others to listen to what he may have to contribute. But far too many sleep centers and practitioners are stuck in the mud with a “if it ain’t broke, don’t fix it” mentality; i.e., if the AHI is good, who cares about all those pesky “residual” arousals. We got paid, let the DME monitor compliance (only) so they get paid, and NEXT IN LINE PLEASE!

“I was thinking more along the lines of comparing multiple sleep studies. The total number of variables is probably in the 4-6 range anyway (sleep stage, body position, xPAP mode, pressure, acclimatization period, unknown knowns (like of pile of heretofore undisclosed assorted pharmaceuticals) and unknown unknowns (like LA is in the ocean (or deserves to be) and Maimonides is on top of a mountain. That could create a significant first night confound).”

Yes, there are numerous factors, such as you mentioned, that come into play. (And I agree with you about the greater LA basin needing to be deep-sixed!) The fact that ABQ is 5,000 feet higher than LA is significant; one thing being due to differences in how blood gasses like CO2 are blown off. (IIRC) So right away we have the issue of respiratory drive & Centrals to debate about. You will be happy to know that in my case, there are no piles of undisclosed medications to foul the data. Just one med (thyroid), and nothing else. No alcohol, no caffeine, no OTC meds, no crazy supplements, nothing. God, I sound awfully boring, don’t I? But it’s one more variable that doesn’t need to be accounted for.

“The data should speak for itself.”

Data that “try’s to speak for itself” is still always open to interpretation and acceptance, thus my sincere question about your willingness & ability to be neutral in your assessment. It only took a few hundred years for the Catholic Church to acknowledge data proving that Galileo was right, and to apologize for burning Bruno to death for heresy. http://4thefirsttime.blogspot.com/2007/ ... es-to.html . Thankfully for us, the arena of sleep medicine moves a little more quickly, but there is always resistance to relinquish widely held beliefs. That is easily attributable to the human ego which doggedly resists anything that causes one to acknowledge (even internally) that one’s beliefs are/were in error. This resistance is evidenced by self-reinforcement behaviors such as the fact that people watch ONLY newscasts that correlate with their currently held beliefs, instead of opening their minds to opposing viewpoints. Yet I digress…

I can foresee where this entire endeavor could prove to be futile & inconclusive, but I am willing to proceed forward. DeltaDave has also presented factors that may confuse & confound any absolute outcome. I am NOT an expert whatsoever in this field, and I readily acknowledge my prejudices – I am obviously predisposed to believing in Dr. K’s methods due to my subjective experience. (And those reported by other patients.) I also saw my PSG data which corroborates Dr. K’s beliefs. (At least in as much as it was presented to this gullible dilettante?) The objective evidence is henceforth to be reviewed & interpreted by someone who MAY have a predisposition towards discounting certain factors. Again, not at all meant as a disparagement to you personally DeltaDave, as I don’t know you – but you are, after all, human - right? (Then again, based on the shear volume of your knowledge, perhaps you are actually an A.I. program. If so, kudos to your developer’s ability to incorporate humor into their program – a Nobel is foreseeable. ) However, you will have to admit that some incredulity on your behalf is detectable by statements you’ve made. (But let’s try to do the Rodney King thing, and all just try to get along.)

Again, all I have to go on is the fact that my problems with aerophagia are gone, and sleep fragmentation was markedly reduced with ASV implementation. I doubt that it could be a placebo effect, as I don’t know how these problems could be influenced by the placebo effect. And if it were that, the placebo effect is usually short-term in nature; it dissipates quickly. I’ve been on ASV for 6 months now, and the subjective improvements have all held up to the test of time.

Perhaps we should start a new thread entitled “showdown at high noon – Dr. K vs. the world”? (Or would that be high-midnight?)

[rocklin]

(edited for DTS™ precision, then mixed on an SSL™)

.

Long chat with an interesting woman (and her mostly silent friend) while waiting in line for UCB tickets last week.

(later learned that like me and mine, she's suffered numerous medical problems, including breast cancer and heart disease.)

She was intelligent, funny, incredibly easy to talk to.

Sadly, truth was the first casualty in our conversation, as it often is in love and war.

She said that her name was Anastacia™, and that she was a singer. I Googled her & Oogled her when I got home. She wasn't lying.

https://www.youtube.com/watch?v=ZfxEF_ZyiJs


__________________________________________________________________________



Her lyrics keep running through my head:

Tripped along many stones
Enough to say
I found my own way
I don't know where to go
Couldn't see where it leads

Making castles in the sand
Afraid no one else would hold my hand
I'm stained from the world
Sad, sad, sad little girl

But I see in your eyes
Your wear no disguise
Help me find my way
I'm like a bird in the sky
You helped me to fly
Fly away
Fly away
Back home back home

Holding on to memories
Often scared
Of what I'd see
And then you came
And then you came
And rescued me
And I'm okay
I'm okay

But I see in your eyes
You wear no disguise
Help me find my way
I'm like a bird in the sky
You helped me to fly
Fly away
Fly away

Oh and I know you'll never leave me alone
I'll follow you just anywhere that you go
In my life I can see you
I know I believe you will stay, oh
In your eyes
You wear no disguise
Oh oh oh
Like a bird in the sky
You helped me to fly
Oh yeah oh oh oh

In your eyes oh oh
Oh yeah, oh yeah
Yeah hey yeah oh
I said you're like a bird in the sky
You helped me to fly
Fly away
Fly away
Back home
Back home


__________________________________________________________________________



Some people here have asked me what I want.

What I want is simple: Like Anastacia, I want to come back home.


Sun Oct 30, 2011

My AHI over the last few weeks is around 0.0

What I want now is to sleep free and clear of this face-hugger . . . to not have an AHI at all.

roc

Is that too much to ask? I mean, isn't that what we all want?

To sleep like a child? To be free? To fly away back home, that home we supposedly can never ever return to?


________________________________________________________________________

Passive??! Bootlicking??! No one has ever used those adjectives to describe me!

I mean to cause you no pain, my Sleeping Princess. Because, in your eyes, I see no disguise.

But, with great sadness, I must also say: "If the glass slipper fits . . ."

________________________________________________________________________

What kind of "passive solutions" are you saying I've engaged in

The same passive solutions 99% of us are using: any kind of PAP.


________________________________________________________________________

and what would be an example or two of "active solutions" that I haven't?

This will do:

There are indications that voice use can strengthen throat muscles. Singing or oratory.

There also is a study showing that the Australian aboriginal woodwind instrument...the Didgeridoo can improve throat muscle tone and can help with apnea and snoring. It has to be done regularly. It uses a tricky breathing technique called circular breathing which involves breathing out through the mouth while sipping air in through the nose. I bought one and try and play it daily but like any discipline...it takes effort. I can do the circular breathing now after several months and feel it is improving my breathing.

So there are things you can do...
Jamis

Retraining throat muscles won't do you any harm, so long as you continue with the Cpap, and if you go the digeridoo route, you will learn a new instrument in the process. So, why not? Let us know if it seems to help...

__________________________________________________________________________

And just whose boots do you imagine I'm licking?

Inho, the Jack-Boots of the status quo.

Specifically, in this thread, DeltaDave.

And DD is just an honest clinician, trying to help us all down a well-worn path.

But I've seen the path, and it seems to have no graceful exit.

Perhaps, it is time for a change.

__________________________________________________________________________

Crashing right now, and I haven't taking a sleeping pill in a month.

0.0 AHI, and no pills.

No BP meds, no AA meds, no SDB meds.

A result I thought was impossible three months ago.

And yet and yet . . .

__________________________________________________________________________

To be continued

(when I awaken)

roc

.

[deltadave]

However, you will have to admit that some incredulity on your behalf is detectable by statements you’ve made.

I am not "incredulous"-- I generally range from "skeptical" to "cynical", and thus far, there have been no objective data presented to support the assertion that the ASV algorithm specifically corrects aerophagia and improves sleep fragmentation to such a degree that all other technology has been rendered ineffective and obsolete.

If the ASV option came free with every xPAP machine, then this conversation would be academic (as is my willingness to change. As far as I'm concerned, people can dial wing to their heart's content. It's a heckuva lot better that a lot of other things (like sitting around tossing down six-packs and wolfin' down bacon-double cheeseburgers)). However, since some people might read this and drop 4-7G's that they can't afford on something that may not work is a concern.

Another question that comes to mind is "Is it only the ResMed ASV algorithm?"

Consequently, at this point, perhaps a more appropriate astronomical metaphor would be something involving 12.21.2012.

If they release the data, the best way to effect the transfer would be to upload to a third party server.

BTW, do you have any of the Silverlining downloads still hanging around?

[ignorant1]

O.K., incredulous was far too harsh of a word. Sincere apologies from another highly cynical & skeptical person to you Dave! I too am a person that does not allow myself to be so mentally lazy that I would ever allow myself to believe in “magical” solutions. The “magic” must be explained and be supported by rational evidence; if there is no clear-cut cause & effect, then something has been overlooked.

…there have been no objective data presented to support the assertion that the ASV algorithm specifically corrects aerophagia and improves sleep fragmentation to such a degree that all other technology has been rendered ineffective and obsolete.

Agreed! And that’s where certain peoples’ (myself included) subjective experience hints that something is up, but we have no hard evidence presented (yet) to explain it. And please understand that I am NOT making an assertion that ASV should immediately replace all current xPAP machines, nor do I assert that ASV would be an additional benefit to those patients whose response to xPAP therapy is adequate to resolve their SDB problems (without inflicting other problems, i.e. aerophagia). Additionally, Dr. K does not profess the use of ASV unless all other xPAP modes have been proven to be inadequate.

Current ASV pricing is absurdly high. Yes, I recognize that the R&D costs need to be recaptured. I also recognize that the hardware is essentially the same, so costs should (ideally) come down over time. And yes, it would be a terrible waste if someone were to drop a ton of money on an ASV, only to find out it doesn’t make a difference for him/her. Then again, nobody should assume anything – that’s what a good PSG is for; to make a rational & objective assessment, not just a guess or a crapshoot of what may work for any specific patient.

"Is it only the ResMed ASV algorithm?"

Maybe. Maybe not. Same thing applies to the Easy Breathe Waveform. We have no objective data about any of this. Maybe some Respironics ASV users could pipe in here to let us know of their subjective experiences???

Consequently, at this point, perhaps a more appropriate astronomical metaphor would be something involving 12.21.2012.

Darn, why didn’t I think of that! I should have done a rental program instead of purchasing the ASV. Just think of how much more money I would have had available to spend on all those double cheeseburgers & beer before the party all comes to a screeching halt next year! Damn!!!

If they release the data, the best way to effect the transfer would be to upload to a third party server.

I don’t know if that’s a viable option. I can request they burn the data to some discs and send them to me however.

BTW, do you have any of the Silverlining downloads still hanging around?

I’ll have to find some old archived discs, but I do have it. I’ll try to find them and install Silverlining again.

[SleepingUgly]

Doesn't bilevel have the same easy-breathe waveform?

[SleepingUgly]

OK, I'll volunteer for an N of 1 experiment. ASV vs. bilevel on aerophagia. I just need an ASV to borrow for this experiment. I like that's it's ASV vs. Bilevel because that would be so cool to do an ABAB design and the A would stand for ASV and the B would stand for Bilevel! I could even be blinded. My husband can blindfold me and between the chinstrap covering my mouth and the wrist splints, this will be like a cross between an S & M film and a serious, high-tech research study! The outcome variable: aerophagia and tolerable pressure. Who's in??

[ignorant1]

Given Rocklin’s apparent proclivity for boot-licking and other fetishes, perhaps the blindfold, the chinstrap, and your wrist splints will capture his interest - maybe he’ll volunteer to supervise?

However, no “dial winging” is allowed! And I doubt that Rocklin is qualified to do a proper ASV titration. Maybe Rocklin will pay for DeltaDave’s airfare if you let him shoot the video?

[rocklin]

Current ASV pricing is absurdly high.

I figure it's right where it should be: the maximum the market will bear.

Yes, I recognize that the R&D costs need to be recaptured.

And you know that they haven't already been "recaptured" exactly how?

You have an inside line on their R&D ROIs?

I also recognize that the hardware is essentially the same, so costs should (ideally) come down over time.

Seriously? You could knock me down with a feather. Ever hear of a slow roll-out?

Resmed's stock is where it is because the smart money knows that they know exactly what they are doing:

Building Demand.


__________________________________________________________________________________________________________

I generally range from "skeptical" to "cynical"

Why?

Why not the other end of the spectrum?

Is it not equally valid?

Consequently, at this point, perhaps a more appropriate astronomical metaphor would be something involving 12.21.2012.

And, perhaps, now we know why you pick the end of the spectrum that you do.

I dream of 12.21.2012.

For me, it's the photo-op of a life-time.

Wouldn't miss it for the world.

.

[rocklin]

However, since some people might read this and drop 4-7G's that they can't afford on something that may not work is a concern.

As compared to the astonishing $7.5 Gs that a simple sleep study at your Architectural Digest style hospital runs?

I know, I know: Art has no price.



But at Krakow's lab, I might just emerge with a shiny new ASV.

Seems like a no brainer.


_______________________________________________________________________________________________________________________

Given Rocklin’s apparent proclivity for boot-licking and other fetishes, perhaps the blindfold, the chinstrap, and your wrist splints will capture his interest - maybe he’ll volunteer to supervise?

Whoa, son! What's this "volunteer" crap?!

My S&M Rodeo quote is handled—as you full well know—by my agent, Sid Rosenbaum.

And I doubt that Rocklin is qualified to do a proper ASV titration.

Why do you doubt?

I don't doubt you when you self-titrate by engaging in dial-wingin', do I?

Maybe Rocklin will pay for DeltaDave’s airfare

I'll cover DD's airfare, if he'll cover my in-flight drinking costs.

[deltadave]

BTW, do you have any of the Silverlining downloads still hanging around?

I’ll have to find some old archived discs, but I do have it. I’ll try to find them and install Silverlining again.

And also, as you can probably guess, a Pressure Profile of a night on the ASV.

BTW, what are your current settings?

If they release the data, the best way to effect the transfer would be to upload to a third party server.

I don’t know if that’s a viable option. I can request they burn the data to some discs and send them to me however.

Right, but once YOU get it. That'll at least save a little time.

[rocklin]

.

It's 4:45 a.m. EST, crack of dawn, deltadave has no one else but crazy rocklin to talk to.

(deltadave studiously ignoring anything rocklin says, as if that alone will make rocklin's posts evaporate, like the morning dew on a summer's day or somethin' . . . )

"Blah, blah, blah"

("Try the veal! . Seriously, have some veal! . Hey, folks, have you considered the veal?". )



__________________________________________________________________________________________________________


(rocklin, looking at all the empty seats, and tapping the head of his microphone)

Is this thing on?


__________________________________________________________________________________________________________


(some pirate radio station, out in the New Mexican desert)

I'm the DJ of Darkness, playing tunes for the maniacs, insomniacs, and general whack-attacks, yeah that whole sizzlin' SDB scene, here at radio X, on station (echoing) Z! . . Z . . .Z . . . z . . .z

_________________________________________________________________________________________________________

Anastasia leads us into the break:

I'm Not That Kind



All the time that we spend together
I won't fuss
I won't fight tryin to make you mine
You know I'm not that Kind
Ha
Wooh
Ah c'mon

I said I'll love you 'til the 12th of never
But I won't run far ahead
Leaving you behind
You know I'm not that kind

'Cause I'm not that kind of girl
(Not that kind)
(Not that kind of girl)
And it's not my kind of world
(Not that kind)
(Not that kind of girl)
No it's not for me
(Not that kind)
Not where I wanna be
(Uh, uh)
(Not that kind of girl)

Help me out
Tell me what you're thinkin
If I rush, slow me down
You can take your time
You know I'm not that kind
(Not that kind)
Yeah
(No I'm not that kind of girl)
Woooh

If you leave, I believe life will go on
The wind will blow, water flow
And the sun will shine, yeah it will
You know I'm not that kind
Yeah

'Cause I'm not that kind of girl
(Not that kind)
(Not that kind of girl)
And it's not my kind of world
(Not that kind)
(Not that kind of girl)
No it's not for me
(Not that kind)
So live and set you free
Yeah

Now what I say to you
I would say to no other
I've got my friends
I won't look for another in you, yeah
So what you gonna do?
Yeah yeah yeah

'Cause if you swing with me
You soon will discover
I give you tenderness
Unlike any other can do
Oah!
And what I say is true
Yeah yeah yeah

'Cause I'm not that kind of girl
(Not that kind)
(Not that kind of girl)
And it's not my kind of world
No, it's not for me, not for me
I said no where I wanna be
Said not where I wanna be, yeah
It's not my kinda thing
It's not the way, way we wanna swing
It's not for you, it's not for me
I said my baby
I'm not that kind
I'm not that kind, yeah
No (not that kind)
Not that kind of girl

https://www.youtube.com/watch?v=DjUKxQYm0AI

.

[sleepy blimp]

I just started using the ASV about a month ago. Since I noticed that leaks were occurring with a mask that covers the nose area, I recently switched back to the nose pillows. The sleep seemed more adequate but now I have aerophagia again. As a physiologist it makes sense to me that if breathing is forced as it is with ASV, then this would tend to produce more aerophagia. But I'll try to make sure that I sleep on my side, don't stay awake too long and keep my tongue on the roof of my mouth. Sure.