Why doesn't APAP respond to apneas?

Doug, the exact rationale for 14 cm is in the link I gave you as well as my followup post on that same referred page.

Bev very clearly says her best results are in a range no lower than 14 cm. So based on Bev's measured answer, I plugged her 14 cm into Respironics' recommendation. Simple as that.

I was only trying to find out where the that "good working baseline of 10 cm" came from. I was positive I had missed it. When you said it came from the CPAP titration I couldn't find it there. When you said it had to do with ASV design I was lost there as well. As it turns out I think you're telling me it's based on aerophagia projections and also your having tried the ASV for yourself. I just wanted to know where the 10 cm came from. That's all.

No offense, but I don't think anyone's personal experiences with 10 cm make for great titration protocols. And I think Bev also mentioned that aerophagia was not at all her primary concern. Please don't take offense at my simply trying to understand where that 10 cm recommendation came from, my friend. We definitely have different opinions on this one, and that is fine. What is not fine IMO is if we don't explore why we have different opinions. I'll give yours some more thought!

In the end Bev is going to have to simply apply her own best judgment as she sees fit.

-SWS wrote:Doug, the exact rationale for 14 cm is in the link I gave you as well as my followup post on that same referred page.

Bev very clearly says her best results are in a range no lower than 14 cm. So based on Bev's measured answer, I plugged her 14 cm into Respironics' recommendation. Simple as that.

I was only trying to find out where the that "good working baseline of 10 cm" came from. I was positive I had missed it. When you said it came from the CPAP titration I couldn't find it there. When you said it had to do with ASV design I was lost there as well. As it turns out I think you're telling me it's based on aerophagia projections and also your having tried the ASV for yourself. I just wanted to know where the 10 cm came from. That's all.

No offense, but I don't think anyone's personal experiences with 10 cm make for great titration protocols. And I think Bev also mentioned that aerophagia was not at all her primary concern. Please don't take offense at my simply trying to understand where that 10 cm recommendation came from, my friend. We definitely have different opinions on this one, and that is fine. What is not fine IMO is if we don't explore why we have different opinions. I'll give yours some more thought!

In the end Bev is going to have to simply apply her own best judgment as she sees fit.

SWS,

Fair comment.

You would start her at 14, I would start her at 10 - perhaps after 2 nights we would meet in the middle.
But I must say that I don't see that starting at 14 is a given allowing for Bev's data results and her comments.

I can promise one thing, that starting her on either 10 or 14 will not kill her - nor in one night is it going to
disable her nor harm her

Thanks for answering my question (I guess I knew your answer beforehand )

Cheers , your friend,

DSM

PS - when I talk of real world use, I am meaning that I have been looking at the data from my own SV and other people's SV for 8 months, every day's data - somtimes after 2 or so days gathering. In effect I have reviewed every single days data recorded on my machine and from the other data sent to me by
other SV owners (four thus far).

I know that the 1st time I have seen data from any new machine, I don't always know what relevance to place on some aspects of the data. But when I was the one sleeping the night before while reviewing the output & knew my environmental factors, the trends in the data take on new meaning. Over time one gets a better and better understanding of what the machine is doing and can do. A theorist is almost certainly going to have a different perspective. Both POVs are very important & one really doesn't need to dilute the value of the other

D

dsm wrote:PS - when I talk of real world use, I am meaning that I have been looking at the data from my own SV and other people's SV for 8 months, every day's data - somtimes after 2 or so days gathering. In effect I have reviewed every single days data recorded on my machine and from the other data sent to me by
other SV owners (four thus far).

I know that the 1st time I have seen data from any new machine, I don't always know what relevance to place on some aspects of the data. But when I was the one sleeping the night before while reviewing the output & knew my environmental factors, the trends in the data take on new meaning. Over time one gets a better and better understanding of what the machine is doing and can do. A theorist is almost certainly going to have a different perspective. Both POVs are very important & one really doesn't need to dilute the value of the other

D

I would suggest that if you even imply I'm a "theorist" or that your a "real world" SV specialist, you're going to fool the message board into thinking either of us have way more expertise than we deserve. I'm certainly not close to being a medical theorist. Rather I'm an opinionating patient. You're not close to being a real world SV specialist either. That entirely misleading characterization creates a wide chasm of implied qualifications that simply don't exist.

Having "vanilla OSA" and breathing into an SV tube creates about the same high error-rate in both assumption and dissemination of "fact" that you've experienced as you've breathed into CPAP, APAP, and BiLevel. And to characterize me as a medical theorist---which sounds so wonderfully lofty that I like it---lends plenty of unearned credibility to me. I would propose that we would do our fellow patients injustice when we put forth even implied expertise credentials in that manner.

IMHO there are waaaaay too many incorrect statements from all the experts on this message board for any of us to be so bold as to even implicitly advertise that we are somehow experts. So in summary: I'm an ignorant S.O.B. and please don't you forget it dammit! But please don't forget the same about yourself whoever you are, no matter what kind of an expert you think you are!

I'm an ignorant S.O.B. and please don't you forget it dammit!

Soooo, if I understand you correctly, you're saying that Snoredog has been right all along?!

As entertaining as reading this discussion has been, I would just like to say that there is nothing that is worse than overhearing one's team of surgeons disagree on strategy just before the anesthesiologist turns on the gas. Talk about an antidote for placebo effect!

There's more than one way to methodically skin any cat. The essence of what always works on this message board is the discernment of treatment results following methodical trial and error. Bev can start with an EPAP of 9 or 10 or Bev can start with an EPAP of 14---and still methodically arrive at the same good results. That methodical probing of biomedical inputs and outputs is essentially "black box analysis" without discovering the details of underlying etiology.

A somewhat unique confluence of physiologic factors is what tends to yield so darn many pressures and modality preferences on this message board. For instance, if Bev is the least bit UARS prone, she might need high pressure to offset some very sensitive cortical arousals. And yet that same high pressure may induce respiratory-controller instability at times---that slight albeit sleep-disruptive periodic breathing that I suspect Bev just might be experiencing. In that case she just may need a higher EPAP of 14 or more (SV detection lacking subtle FL wave shape discernment---albeit not flow amplitude discernment). But that same possible scenario also warrants SV's fluctuating IPAP to additionally offset the flow amplitude oscillations of induced but slight periodic breathing. Then again, Dr.Krakow discovered that some UARS patients fare better with EPAP dropped far lower than 9 or 10 while IPAP stays relatively high.

Alternately, aerophagia may be more at the crux of Bev's sleep disturbances than even Bev suspects. In that case a lower EPAP of say 9 or 10 may help. There are more possible combinatorial factors involved here than we can shake a stick or even CPAP hose at! As always, methodical trial and error, combined with analysis of data and especially subjective assessment is the most important aspect of gaining treatment improvements IMO. When patients present failed response to routine treatment protocols, research clinics often place routine protocols aside for methodical pressure treatment "stimulus/response" challenges. But frankly that happens only after additional broad differential diagnosis fails to pin down that failed treatment response to yet other possible health problems.

jnk wrote:Talk about an antidote for placebo effect!

Interesting that you should mention placebo effect. Over the years there have been many patients who tried new machines or modalities---only to discover improved results that lasted only days, weeks, or months.

Most people probably think of placebo effect simply as being tantamount to somehow being tricked or fooled about a treatment's results. But there's also this entirely different and important issue that I think often happens: with the application of placebo, hope itself inspires positive attitude, which in turn positively affects pathophysiology----as if nothing more than frame of mind itself were either a potential slow poison or wonderfully potent medicine.

Hope and positive attitude are all too often grotesquely neglected aspects of certain treatment regiments IMO. One personal anecdote in particular reminds me of the potential medical benefits of an uplifted frame of mind: we suggested that my brother-in-law fly in from California, before his ailing father was simply too incapacitated to enjoy a visit from his son. We warned my brother-in-law that his father's mental coherence and ability to walk were very rapidly declining---especially his ability to walk, which was almost non-existent. My very surprised brother-in-law initially thought that we were exaggerating or lying when his father walked with him every day while enjoying mentally vibrant conversations and the loving bond between father and son. Weeks after that surprising health detour my father-in-law's health gradually continued its previous very rapid course of decline.

Positive frame of mind had literally overridden my father-in-law's diseased pathophysiology for a couple months. That amazing turn-around in health was something that all the pharmaceuticals and traditional therapies just weren't able to pull off for my father-in-law. Thus I believe one of the universe's most powerful medicines is potentially deep inside all of us---waiting to be harnessed. A fascinating area warranting more scientific research IMHO.

-SWS wrote:

dsm wrote:PS - when I talk of real world use, I am meaning that I have been looking at the data from my own SV and other people's SV for 8 months, every day's data - somtimes after 2 or so days gathering. In effect I have reviewed every single days data recorded on my machine and from the other data sent to me by
other SV owners (four thus far).

I know that the 1st time I have seen data from any new machine, I don't always know what relevance to place on some aspects of the data. But when I was the one sleeping the night before while reviewing the output & knew my environmental factors, the trends in the data take on new meaning. Over time one gets a better and better understanding of what the machine is doing and can do. A theorist is almost certainly going to have a different perspective. Both POVs are very important & one really doesn't need to dilute the value of the other

D

I would suggest that if you even imply I'm a "theorist" or that your a "real world" SV specialist, you're going to fool the message board into thinking either of us have way more expertise than we deserve. I'm certainly not close to being a medical theorist. Rather I'm an opinionating patient. You're not close to being a real world SV specialist either. That entirely misleading characterization creates a wide chasm of implied qualifications that simply don't exist.

Having "vanilla OSA" and breathing into an SV tube creates about the same high error-rate in both assumption and dissemination of "fact" that you've experienced as you've breathed into CPAP, APAP, and BiLevel. And to characterize me as a medical theorist---which sounds so wonderfully lofty that I like it---lends plenty of unearned credibility to me. I would propose that we would do our fellow patients injustice when we put forth even implied expertise credentials in that manner.

IMHO there are waaaaay too many incorrect statements from all the experts on this message board for any of us to be so bold as to even implicitly advertise that we are somehow experts. So in summary: I'm an ignorant S.O.B. and please don't you forget it dammit! But please don't forget the same about yourself whoever you are, no matter what kind of an expert you think you are!

SWS my good friend - half this recent pointless exchange has been someone reading far more into the comments of the other than they deserve. Now you have me claiming to be an expert (at what?). Listen!, the only thing I'm expert at is downloading my own data each night and looking at it. Now you tell me that me saying that because I understand my own data more over time that I am claiming to be an OSA expert (sorry but that line is plain BS). Also read my posting moniker. I am like you an interested party. No professional. Please stop reading more into every line I write else well be going in ever decreasing circles for ever

Bev has bought an SV that is fact. I believe that someone else who has one can help her. That is all my claim is pure & simple & I would hope patently self evident.

Cheers you argumentative old soul

Your patient friend DSM

dsm wrote:Cheers you argumentative old soul

Cheers!

I think I'd like to join the crowd that says there's additional factor(s) underfoot creating the EDS.

Bev, how much Ambien did you take before the studies? Were you still on Lexapro for either or both?

While Ambien MAY change sleep architecture a bit by increasing SWS and delaying REM somewhat, it is somewhere between very unlikely to nearly impossible that the sleep stage percentages seen in the studies
are to be explained by Ambien alone.

That amount of SWS is to die for. But on a related note, SWS is not particularly prone to respiratory events, so seeing all those apneas in there is quite curious.

Any chance on getting a hold of the raw data discs (the actual sleep studies themselves)? Speaking of a fishing expedition, I'd like to go on an alpha intusion hunt.

SAG

StillAnotherGuest wrote:Any chance on getting a hold of the raw data discs (the actual sleep studies themselves)? Speaking of a fishing expedition, I'd like to go on an alpha intusion hunt.

Bev, if you can somehow manage to get ahold of the raw PSG data on disc(s), SAG is well trained to analyze those. He's a professional and a champion.

And any alpha wave intrusions (from the likes of pain, fibromyalgia, etc.) would explain very poor sleep architecture resulting in poor daytime cognition, EDS, etc.

I also think a "neurologically defensive" response to pain stimuli just may explain bifurcation in some patients regarding central dyregulation: some nights there can be stimuli based central dysregulation, and other nights there may not----based on the episodic degree to which that stimuli is or isn't present on any given night. The erratic rate at which a disruptive set of stimuli is present or absent, coupled with a neurological predisposition toward defensive central dysregulation (as the response), conceivably accounts for that bifurcation IMO.

There is conceivably a collection of contributing issues (including pain and aerophagia) that need to be fixed here to offset a neurologically sensitive sleeper... Just my opinion, though.

DSM, SWS,

Please don't let me be the cause of conflict between you two. I respect both of your opinions and am interested in the different approaches you take in your thinking. I can't believe either of you have sleep apnea, as I don't see any evidence of brain fog in either of you.


SAG,
I believe I was given 5mg of Ambien before each test. That is the amount that I told them had worked for me in the past. I was on 10 mg of Lexapro for both tests, although I am no longer taking it. I don't believe I ever needed it, they just assumed depresssion because I'm so tired all the time

All,

I would prefer to be using a lower pressure if I could get good therapy with it. My MAIN problem with this therapy is that the masks (all 15 or more that I have tried) leak at the higher pressures and wake me up many times during the night. Even more than the aerophagia. Since the APAP didn't seem to be able to go up in time to get my apneas, I kept raising the lower to be able to catch them. This is the best AHI I have gotten (14-17) but I still don't feel rested and it is difficult to wake up when I finally do get to good sleep, about an hour before the alarm goes off.

I would like to see all of the stuff from that last study, as well. Like, was anybody even there watching me? The mask kept leaking and I was fumbling with it and couldn't make it stop. I thought someone would see me and come in to help or change the mask. At the end, they had me fill out a questionaire asking how many times did I think I woke up. I answered 30 and I think I was close.

It took me months and threats to get a copy of my prescription and study. I really don't think they are going to give me any more info.

If the placebo effect works with the SV, great. I'll take ANY good effect. I have a good attitude about CPAP. I preach sleep study to everybody I know. But I think 90% of adults should be tested. And a lot of children and teens should be tested before put on antidepressants or attention deficit drugs. I know it works because of all of you on this forum who care enough to stick around and help us.

Bev

Bev, absolutely no hard feelings between Doug and myself. He accepts me for the argumentative SOB that I can be at times, and that's the sign of an extraordinary friend. But now that I think about it... I accept his tendencies to debate points as well.

OutaSync wrote:It took me months and threats to get a copy of my prescription and study. I really don't think they are going to give me any more info.

I certainly won't push the point. But if you think you may be inclined to at least try for that data, you could truthfully say that the manager of a sleep lab has kindly offered his assistance. I believe that we are all legally entitled to our medical records to solicit second or third opinions.

OutaSync wrote:I would prefer to be using a lower pressure if I could get good therapy with it.

In that case you might want to start with that lower 9 or 10 EPAP and evaluate results. Then tweak up if you need to. If you decide to start with a higher 14 EPAP, then experimentally tweak down and evaluate data results as well as comfort. Metaphorically you can begin digging a tunnel from either end, and still yield the same end result.

Is there any chance the doc prescribed Lexapro because he suspected fibromyalgia?

jeff (who didn't get enough delta to get any alpha-delta )

Jeff, I just caught this in your tag line:

attitude: alternates between being mischievous and making long-winded, often-misguided, attempts at being helpful.

Man, I love your humor!

I have a slight bifurcation problem, I guess.