Resmed VPAP Adapt SV - for Central Sleep Apnea

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
-SWS
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Post by -SWS » Wed Apr 18, 2007 10:11 pm

dsm wrote:Maybe peole could handle varying gaps, but based on what I know and my own experience, I would need a lot of convincing that it was helpful therapy.
My thoughts exactly about insulin. I can't see the rest of the patient population needing any based on my own experience of not benefiting from insulin.

Just pulling your leg, friend!

But seriously, how can we gauge the variant CSA responses looming in the patient population as a whole? Isn't there somebody, anybody who might benefit from CPAP+PS? Or are you guys pretty convinced this is just a mode of folly or merely marketing? .


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dsm
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Re: Graphs 101

Post by dsm » Wed Apr 18, 2007 10:30 pm

StillAnotherGuest wrote:
Lubman wrote:SAG, walk all of us through the graphs in the last post.
Well, we can do a couple.

Let me preface this by saying that I don't think AutoScan (or in this case it's actually ResScan) is going to provide a great amount of really good detail in these cases. A lot of this simply boils down to "It's Working" ("That's Amazing!") or "It's Not Working" ("That's Not So Amazing!").

Image

I originally called the areas indicated by the red arrows at 1 and 3 runaways, with the net result being the machine gets a little "pushy". The AdaptSV was set to default (EEP 5.0 cmH2O, MinPS 3.0 cmH2O, so if things were stable, it should simply be sending out a bunch of 8/5 waveforms. But as you can see, the "IPAP" is well over it's baseline of 8 cmH2O for extended periods. And it maxes out at 15 cmH2O frequently. And it's not attacking events.

In the case of the Tidal Volume, it's just putting in points for what the tidal volume is at the moment (600 ml, 1000 ml, 0 ml, etc.). Looking at the actual breaths in that first area from the PSG shows us the following pattern:

Image

The actual breaths are reflected in ASV Pressure. As you can see, for every 2 pressure waveforms (at least) sent in, there's only one real flow waveform, but within that is a blip. The blip represents a second breath sent in prematurely, or stacking breaths, or whatever you want to call it, but there is a patient-machine asynchrony. Normal tidal volume should be about 500 ml, so what that tidal volume graph represents is a collection of stacked breaths (the 1000's) and blips picked up as breaths (the 0's).
Lubman wrote:The Tidal Volume shows considerable fluxuation, and then it begins to vary a small amount. Is this an apnea or hypopnea? In other works the breathing is shallow? and an event occurs.

The VT than changes dramatically.
So in answer to your question, that center area is stable breathing with a tidal volume of 500 ml. The ends are asynchrony associated with Wake/Stage 1 transition.
During the point where the VT is not varying, the backup rate of the machine, since it has no significant patient breathing to use as input, reverts to whatever the algorithm's default rate might be. And in this case it happens to fall below 15. And the $5000 question is why, if the literature claims the backup rate is 15 when no other inputs are available.
It's not a "Back-Up Rate" in the S/T sense of the word, i.e., the machine will never allow you go below 15. If your breathing is stable and you can easily see <15, which is what it's doing in this case. And as christine explained earlier, rate is only one component of what matters, minute (alveolar) ventilation.

What's really important is how long you want to wait to respond when you do have a central apnea. At f=15, you have a 4-second apnea. You want to go to f=10? That's a 6-second apnea. Meanwhile, the pCO2 is increasing, and the whole goal of this is control pCO2. Wait too long and the pCO2 will increase such that the resultant hyperpnea on the rebound will cause the cycle to perpetuate. If you want to fix CHF/CSR, get an AdaptSV. If you want to dial in rates, get an S/T.

Looking at the Minute Ventilation in the graphs seems to be helpful. Refer back to Page 21 to see the examples of Normal (or Controlled) and untreated "neat" CSDB, "messy" CSDB and CHF/CSR. And to those we can now add this one, asynchrony. The fluctuations are a little bit coarser.

If you have the ability to do trend downloads, then looking at Minute Ventilation can also give some insights to "good" and "bad" nights.
SAG
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dsm
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Post by dsm » Thu Apr 19, 2007 2:52 am

-SWS wrote:
dsm wrote:Maybe peole could handle varying gaps, but based on what I know and my own experience, I would need a lot of convincing that it was helpful therapy.
My thoughts exactly about insulin. I can't see the rest of the patient population needing any based on my own experience of not benefiting from insulin.

Just pulling your leg, friend!

But seriously, how can we gauge the variant CSA responses looming in the patient population as a whole? Isn't there somebody, anybody who might benefit from CPAP+PS? Or are you guys pretty convinced this is just a mode of folly or merely marketing? .
xPAP and Quattro std mask (plus a pad-a-cheek anti-leak strap)

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StillAnotherGuest
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We Shall See What We Shall See

Post by StillAnotherGuest » Thu Apr 19, 2007 3:39 am

-SWS wrote:But seriously, how can we gauge the variant CSA responses looming in the patient population as a whole? Isn't there somebody, anybody who might benefit from CPAP+PS? Or are you guys pretty convinced this is just a mode of folly or merely marketing?
Well, if the marketing claim for it's

Image

and you have an algorithm that is flow-oriented (i.e., has the ability to address flow limitations) then that would seem to open up all kinds of doors now, wouldn't it?
SAG

Image

Aromatherapy may help CPAP compliance. Lavender, Mandarin, Chamomile, and Sweet Marjoram aid in relaxation and sleep. Nature's Gift has these and a blend of all four called SleepEase.

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StillAnotherGuest
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We Shall See What We Shall See, Within Reason

Post by StillAnotherGuest » Thu Apr 19, 2007 3:44 am

StillAnotherGuest wrote:...then that would seem to open up all kinds of doors now, wouldn't it?
On the other hand, $4000 is a lot of coin to spend on an IFL1 button.
SAG
Image

Aromatherapy may help CPAP compliance. Lavender, Mandarin, Chamomile, and Sweet Marjoram aid in relaxation and sleep. Nature's Gift has these and a blend of all four called SleepEase.

-SWS
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Post by -SWS » Thu Apr 19, 2007 8:44 am

dsm wrote:Yup maybe a leg pull but really, insulin is a poor comparison to cpap therapy
Doug, insulin really wasn't the underlying comparison here. The concept of generalizing physiologic disorder from few to many patients was the real underlying comparison. Both my humorous statement and your serious statement attempted to do just that. It's precisely because generalizing physiologic disorder and treament response from one or even a few patients does not work very well, that the entire field of epidemiology exists.
dsm wrote:Breathing & the basic nature respiration (outside people with medical side issues) is pretty common to all of us...
Right. Again there's my point. Normal breathing mechanics can be modeled as a matter of commonality. But when you start talking variations of cardiopulmonary disease, it's not a good idea to generalize from any one patient to an entire patient population.
dsm wrote:But call it as you see it (I'll stick to cpap issues
LOL! But here you're actually working epidemiology, relative to which treatments you think will work on all kinds of documented and undocumented variants of disease. That's really more of a patient-population treatment generalization issue than it is a "here's how CPAP operates" type discussion.

I realize it can be very tough to separate these two issues! Put me down as having repeatedly struggled with it also. .

Last edited by -SWS on Thu Apr 19, 2007 9:13 am, edited 2 times in total.

-SWS
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Re: We Shall See What We Shall See

Post by -SWS » Thu Apr 19, 2007 8:59 am

StillAnotherGuest wrote:
-SWS wrote:But seriously, how can we gauge the variant CSA responses looming in the patient population as a whole? Isn't there somebody, anybody who might benefit from CPAP+PS? Or are you guys pretty convinced this is just a mode of folly or merely marketing?
Well, if the marketing claim for it's

Image

and you have an algorithm that is flow-oriented (i.e., has the ability to address flow limitations) then that would seem to open up all kinds of doors now, wouldn't it?
SAG
So far the above has been the most useful post, for me, in understanding how these two machines differ regarding who they should treat. The Resmed machine is targeted for patients who are primarily centrally dysregulated. This Respironics machine seems to target patients who are primarily obstructive in their disorder and centrally dysregulated on a secondary basis. Caveat: it's a marketing claim and not scientific literature.
SAG wrote:On the other hand, $4000 is a lot of coin to spend on an IFL1 button.
A lot of coin for sure.

But I better point this out for the newcomers who aren't tuned in with SAG's excellent tongue-in-cheek humor: this machine is not at all functionally close to being an automatic IFL button on a traditional CPAP, APAP, or BiLevel machine.

The most radical difference will be on the system's output side: this machine performs individual-breath-based adaption when a flow-based system processing trigger has finally been met. Adaptively modifying individual breath cycles (based on output-side flow-based feedback loops) are what these ASV machines are all about. None of the traditional CPAP, APAP, or BiLevel machines do that (with or without IFL controls).


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Post by christinequilts » Thu Apr 19, 2007 4:21 pm

FQ- Sorry it took me so long to respond to your post, but I wanted to give careful consideration to some of the points you raised. One thing I keep coming back to, is have you recently tried a fully Adapt compatible mask, such as the Vista, to see if you notice a difference in how the machine feels? Not from memory, where it sounded as if your issues with the Vista were with how it fits and how the airflow feels different then an intra-nasal application like the Swift, but recently since the issues with the Swift & Adapt and how the Adapt may very well be functioning differently with the Swift?
frequenseeker wrote: That was an interesting description from DSM of the autonomic hyperactivity, like what I experienced in the study as well (extreme coldness, anxiety etc. that took awhile to settle down).


That was the hard part to describe from my short trial of the Swift- I didn't feel 'right' when I did finally attempt a fitful nap with it, but it was hard to put into words. Definitely some 'supercharged' kitty, mixed with other 'weird feelings', and not a 'good rest, relaxed & now I have energy' feeling I normally have after an afternoon nap with the Adapt & my regular masks. In many ways, it was worse then if I happen to nap without the Adapt at all. It took awhile for everything to return to normal and why I suggested my Swift was going to end becoming a cat toy if my Mom didn't adopt it- I really don't want to experience that again. I played around with as much as I did because I was concerned about you and was trying to figure out what you were describing, because it was such a different experience then what I've had with the Adapt. The only night I remember being even a little uncomfortable was my titration, when the EEP was set too low compared to my normal BiPAP ST pressures and I wasn't use to such a low pressure support spread. But even that was short lived once the EEP was high enough, and I got use to how it worked and felt like I could trust the machine to keep me breathing.

frequenseeker wrote: I usually would feel more comfortable after awhile, maybe 10 min, of breathing with it. It felt like parts of me inside needed to open up and when they did, the machine backed off. Like my turbinates were the problem, and maybe my ?asthma?emphysema, whatever is going on with my stiff lungs...
I played around with a lot with the Swift, using it for 20 minutes then off for an hour, retry without running LC, running with running LC/Vista. I definitely felt it backing off somewhat after 10-15 minutes, so it wasn't as bad as when I first put it on, but it was never as comfortable as when I use either the Vista or Activa. You know I love my shoe analogy when it comes to masks...using the Swift, which was great fit wise (had been one of past favs), but machine wise it was like I had on a pair of high heels, real rocky at first then a little better once you convince yourself they're the only ones that match your outfit, but never something I'd describe as 'comfortable'. More like those high heal dress shoes you just know you're going to kick off as soon as you can and hope no one notices you're barefoot under the table; if my machine felt like that every night, I'm pretty sure I would be ripping my mask in my sleep. In comparison, while the Vista or Activa can be a bit more fickle fit wise, machine wise its like slipping into my favorite slip on tennis shoes...perfect molded to my needs from the moment I slip them on and I'd gladly wear them all day, any day if I could get away with it.

I understand the nasal issues too- I look forward to putting on my mask at night to clear my breathing passages from breathing unfiltered air all day. I sure don't miss the clogged up feelings at night and waking up with a sore throat every nearly every morning like I use to before xPAP and its wonderful filtered air. There are some days during allergy season (season? they last all year for me-lol) were I take a non-sleep 'rest' with my xPAP just to get some filtered, pressurized air to breath better for awhile. I didn't think the regular nasal masks would as well as my ComfortCurve or my Swift, but they have so far.
frequenseeker wrote:I know that even off pap, during the day, I feel like my turbinates are impeding flow. One of my docs looked at them once and said they looked swollen, offered Nasonex, but I didn't follow through with that one.
And why not try the Nasonex?
How long ago was this recommendation made?
Could this be the missing piece of the puzzle?

....explaining why even though you have such a low residual AHI, you feel you've not been successful with all the various xPAP's & assorted treatments you've tried in the past 3 years? Could it be minor nasal congestion & irritation that's affecting your sleep adversely, more so then your residual AHI?
With the lengths you've went to with your treatment, why didn't you at least try to see if it would have helped at some point? Or another similar prescription nasal spray and/or daiy saline sinus lavage to help with swollen turbinates & sinus issues?
frequenseeker wrote:It may be yet another place where my edema is manifesting, or some other non allergic explanation.
You've mentioned edema as a problem for some time now. Is it related to one specific allergen you're aware of? Have you been tested for food allergies and/or tried a strict elimination/rotation diet to see if you can identify possible allergens or food intolerances? I discovered over a year ago that I was indeed reacting to the corn maltodextrin in the enteral feeding tube formula I'd been on for over 3 years with extreme body wide edema, especially in my lower legs and feet. I was glad to be rid of the extra 15-20 water weight it caused, though I still have to be very cautious to avoid all corn & corn derivatives, otherwise my shoes are not going to fit within a couple hours. The said thing is I questioned everyone from multiple dietitians to doctors and even the manufactures who all told me since there was no corn protein left in maltodextrin, you can't possible have an allergic reaction to, since I'd been diagnosed with a corn allergy several years earlier. That is all fine & well in theory, but in the real world, there is a small amount of corn protein left, which my body was trying to tell everyone. Its tough to eliminate all corn and corn derivatives in the US with current labeling laws since its not considered a 'major allergen'; and on top of that, is often used in production as a 'tool', which means it doesn't have to be included as an ingredient even though the food item may be covered with corn starch. I fought the idea I had to eliminate nearly every trace of corn derivatives because when I was constantly reacting to the maltodextrin, I didn't notice a little here & there. Prior to the feeding tube, I only avoided fairly obvious corn/corn derivatives, never thinking it would make a difference to go to such an extreme, but I finally realize it does, eliminating some things, like dark purple under eye circles, that I'd had since I was a kid. It took me almost a year after discovering the maltodextrin issue to take the next step of avoiding corn & all corn derivatives humanly possible. Even trace amounts can cause nearly immediate reactions, including the familiar edema (and needing a larger pair of shoes withing a few hours), facial rashes, general ickiness & feeling out of it, dark under eye circles, screw with my breathing & BP and who knows what else- its hard to tell sometimes with my other health issues. Airborne popcorn fumes got me recently when I was shopping to the point they affected my breathing for several hours afterwards, which is when my doctors decided it was time to carry an EpiPen at all times.

I'm not saying you're having the same problem with the same allergen, but if you've ruled out other possible causes of your edema, looking at food allergens is a plausible answer. I think in the past I remember you mentioning you had some success with eliminating sulfites, didn't you?? Have you continued avoiding sulfites in your diet? Any other possible connections with various food allergens?
frequenseeker wrote: I live with it constantly so I don't really notice most of the time, but really as I look at it now it is a problem that I need to deal with. I know I had identified it last year as the reason I tend to swallow my food right down and not chew. It's because I can't breathe and chew at the same time...unless I really try hard. It is kinda interesting: I gravitate to soft foods like soup and oatmeal and bread and soft fish even though I really want to eat brown rice and salad and crunchy vegetables. This pattern has become really strong since starting pap, and very strong in the months since starting ASV. I think I am having a revelation here
I understand the 'living with it' and allowing it to become your 'normal'. I know you've also mentioned a lot about having GI issues. Have you looked it from that point of view? The foods you are gravitating towards are also lower residue and easier to digest. If using machines and mask set ups that are not right for you are throwing your body out of whack, you have to admit it could be screwing with your stomach too.
frequenseeker wrote: Just occasionally the machine would seem to run away from me in the middle of the night and if I did a LC with the Vista again it would be better thereafter. I wonder if it was interpreting my tight airway as a flow limitation to be overcome. I don't understand flow limitation in the apnea therapy lexicon fully, and it is not measured in the AutoScan, maybe someone can comment?
What do you mean by 'running away'? Increased pressure even if you were breathing regularly? Trying to force higher RR then you would normally have?

My first thought if someone said they had to rerun LC if they hadn't made any changes is that something must be wrong with their machine and they need to have it checked out ASAP. But it sounds like your recent BI titration showed the same issues, using their machine, which leaves the interface as the next most likely problem. From my understanding of how the Adapt works, its not trying to fix flow limitations, but maintain stable breathing caused by central events. It assumes any obstructive events have been accounted for by setting the EEP appropriately.


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dsm
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Post by dsm » Thu Apr 19, 2007 4:42 pm

-SWS wrote:
dsm wrote:Yup maybe a leg pull but really, insulin is a poor comparison to cpap therapy
Doug, insulin really wasn't the underlying comparison here. The concept of generalizing physiologic disorder from few to many patients was the real underlying comparison. Both my humorous statement and your serious statement attempted to do just that. It's precisely because generalizing physiologic disorder and treatment response from one or even a few patients does not work very well, that the entire field of epidemiology exists.



Steve, Agreed but insulin dependency is a dramatic attention getting topic to use to score a point - Your comparison would have been more legitimate if you had compared xPAP opinions of therapy types to weight loss therapy types (now I'm doing your debating for you ). Weight loss and xPAP are broadly on a par healthwise & the comparisons with debating what therapy works best for any individual is about equally valid
-SWS wrote:
dsm wrote:Breathing & the basic nature respiration (outside people with medical side issues) is pretty common to all of us...
Right. Again there's my point. Normal breathing mechanics can be modeled as a matter of commonality. But when you start talking variations of cardiopulmonary disease, it's not a good idea to generalize from any one patient to an entire patient population.


Steve, I thought the "outside people with medical side issues" disclaimer was pretty clear here but I am sure that even among them we would get a high consensus on the point that 2 cms is too low a ipap/epap gap.

Also, you seem to be arguing that there are little to no grounds to make any general remarks (from realworld experience) like "based on my (generalized) experience with Bilevel, a gap under 3 seems inadequate." - when it comes to using bilevel xPAP I believe we can validly make such general observations as long as we a cognisant of the potential variants (on this point I believe a very small minority afflicted by additional medical complications might consider 2 cms acceptable). There is a certain inherent logic to me that says if a bilevel machine is set with to too low a gap (by my observations are that 2 cms & lower), then the benefit of it being a bilevel appears to be quite lost or not there at all - go get a Cpap or Auto
-SWS wrote:
dsm wrote:But call it as you see it (I'll stick to cpap issues
LOL! But here you're actually working epidemiology, relative to which treatments you think will work on all kinds of documented and undocumented variants of disease. That's really more of a patient-population treatment generalization issue than it is a "here's how CPAP operates" type discussion.

I realize it can be very tough to separate these two issues! Put me down as having repeatedly struggled with it also. .




Steve,

Even Christine who has many additional medical complications, agrees re what is a decent minimum gap. In fact Christine opened up the topic.

I enjoy debating these points with you - makes learning fun

DSM

(please no more insulin shocks )
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frequenseeker
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Post by frequenseeker » Thu Apr 19, 2007 7:01 pm

CQ -
Thanks for your detailed and obviously compassionate post.
I still avoid sulfites. I think your experience with even the tiniest amounts of corn certainly demonstrates how powerful such allergies can be.
I tie my edema to salt sensitivity. Very hard to avoid salt and believe me I make the effort all the time. (Amazing how some soups can have 100 mg and other 1000mg or more of sodium. )
I think something in the salt-water balance system is out of whack, rather than a food allergy etiology. BTW the lungs have quite a role in the angiotensin system, which affects fluid/salt balance.
But - I will review and see if there is a possible food trigger. I do avoid maltodextrins as a general rule but have not been 100% aware, for instance. I have not noticed a direct corn allergy in any way, just the sulfites associated with stuff like corn syrup.
About my turbinates, maybe I was a bit extreme in my description. It is my left nostril that seems to be the chronic one. I believe I usually have at least one functioning well enough. I don't think it the cause of the ASV trouble. If I was having continuous flow limitations from that (or any other cause) during the sleep study would thay not have investigated that?
They know the pressure at the nostrils, and if there was an interference it would have affected the whole algorithm, no?
I tried the Nasonex but it did not seem to have a beneficial effect. Like you I enjoy that humdified air..
Aside from any other discussion that can be made about my sinus/nasal situation (and often they are better after using pap, as Christine mentions) there are three points behind my mentioning it:
1. the initial Learn Patient might be affected by the initial congestion/swelling even if it gets better later
2. if the LP callibrated during congestion and later in the night the congestion got better, would that affect the algorithm, and
3. if swelling was really a problem would it not show up throughout the night in the flow limitation.
I understand the nasal issues too- I look forward to putting on my mask at night to clear my breathing passages from breathing unfiltered air all day. I sure don't miss the clogged up feelings at night and waking up with a sore throat every nearly every morning like I use to before xPAP and its wonderful filtered air. There are some days during allergy season (season? they last all year for me-lol) were I take a non-sleep 'rest' with my xPAP just to get some filtered, pressurized air to breath better for awhile.
CQ, it sounds like your sinuses could be worse than mine even, or at least in season theoretically anyone might have allergic (airborne) allergies, so we might want to add this condition into the discussion of how the ASV et al might get confused by it, or not.
What do you mean by 'running away'?
I think it was really more a matter of stronger pressure combined with the increase RR. Maybe I had just had some big apnea and woke up to experience the increased response of the machine being carried over for longer than I could sleep through..

I have thought about trying the Vista with ASV just to see..but my problem with the backup rate could still occur anyway, and I don't want to go there again.
See next post.
(Thanks again Christinequilts )
frequenseeker

frequenseeker
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My sleep study graphs

Post by frequenseeker » Thu Apr 19, 2007 7:04 pm

Hey, no one here has made any comment about my sleep study graphs a page or two back, I posted 4 samples of different times and results.

Were they overlooked, or is there another explanation? I thought there might be some comment, at least acknowledgement..?
thanks,
frequenseeker

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StillAnotherGuest
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OK, You Asked! (Again)

Post by StillAnotherGuest » Thu Apr 19, 2007 8:27 pm

frequenseeker wrote:Hey, no one here has made any comment about my sleep study graphs a page or two back, I posted 4 samples of different times and results.
Sure, no problem, glad to help! (Doesn't this sound familiar?)
frequenseeker wrote:Adapt with you in stable slow wave sleep--everything looks good in slow wave sleep!
Except for all the alpha intrusion.

You can see cardiac oscillations in the pressure waveforms on BiPAP. Those are the little lumps on the waveform that 420E, for example, uses to identify "open airway" apneas. See how they match up with the EKG spikes:

Image

The sleep efficiency looks to be awful at about 70%.

Image

Severely delayed REM (due at least in part to huge WASO). Existing REM fragmented.

There's no indication of any flow limitation.
Adapt in light sleep--notice the sharp spikes in the nasal pressure tracing--that is that back-up rate issue. The EEG gets thick and dark--that is the resultant arousal. There-in lies the problem
No to all of the above. Even it it were, how would you explain the second "arousal" which lags about 14 seconds behind? Or a similar spontaneous event in the BiPAP REM?

The BiPAP looks like a Respironics something with the BiFlex turned on.

The AdaptSV channels are not here. They really should be shown to accurately track pressures. And would also have helped to differentiate that event above (which has more of the appearance of a jerk with resultant motion artifact as it carries through all the channels).

There are different windows (60 and 120 seconds) which grossly makes things appear different.

In one Adapt SV screen your rate is 12, in the other is 15. Neither screen, however, looks to be in ASV Mode, so that rate is entirely you. Therefore, the AdaptSV can do <15, and you can do fine at 15.
BIPAP--narrow I:E difference--first just look at the difference in respiratory rate--so much slower than 16!
Fine, but you're awake. When you're asleep on BiPAP, your rate is 14.

You look more like a "15" person than an "8", and based on the information presented, show you do fine with either modality.
SAG

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Aromatherapy may help CPAP compliance. Lavender, Mandarin, Chamomile, and Sweet Marjoram aid in relaxation and sleep. Nature's Gift has these and a blend of all four called SleepEase.

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dsm
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Post by dsm » Thu Apr 19, 2007 8:42 pm

FQ & CQ,

Re use of Nasonex. This issue of nasal congestion seems to be something we share.

I went to my doc in Jan on the basis I had regular bouts of nasal difficulty & having lost lots of weight, was surprised to find myself having increased nasal congestion. I was hoping for a referral to an ENT. But this doc (new for me as my prior GP retired at end 2006) asked me to try Nasonex. My previous doc had put me on it several years ago but I didn't like the 'smell' of it (neither does my wife).

After 3 weeks on Nasonex I went back to say it seemed to make only a little difference. The doc said he knew it would take time & would I persist. I have now been on it for close to 3 months & it does seem to slowly be improving things (very slowly). I don't notice its odd odour - the nearest I can relate it to is the smell I recall from childhood of inside my sisters dolls heads when the head was pulled off (talking late 1940s early 1950s)

I do occasionaly also use Otravin (doc says I can use both it and Nasonex at the same time) but Otravin is known to cause rebound if used for to many days in a row (I'm told 5 is the number), but it provides instant relief & lasts all night.

Also when I use a nasal prongs mask (say Adams Circuit) - I *have* to drop the CMS back by a min 1.5 or max 2 CMS (even on my PB330 machine) else I get that 'supercharge kitty' feeling & the same odd nights sleep + for me, throatfuls of phlegm. But often feeling 'full-of-beans' the next day, but usually even then with an underlying suspicion that it is a temporary effect & will bite if I kept that pattern of sleep up.

I really like nasal prongs but these days I just stick with my UMFF as at ipap/epap of 13/10 CMS, it is manageable and side issues mostly tolerable.

I want to experiment further with a hybrid but need to negotiate a few nights to do so with my wife as I know it will be initially disruptive.

DSM
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Post by christinequilts » Thu Apr 19, 2007 9:34 pm

dsm wrote: But this doc (new for me as my prior GP retired at end 2006) asked me to try Nasonex. My previous doc had put me on it several years ago but I didn't like the 'smell' of it (neither does my wife).

After 3 weeks on Nasonex I went back to say it seemed to make only a little difference. The doc said he knew it would take time & would I persist. I have now been on it for close to 3 months & it does seem to slowly be improving things (very slowly). I don't notice its odd odour - the nearest I can relate it to is the smell I recall from childhood of inside my sisters dolls heads when the head was pulled off (talking late 1940s early 1950s)
I don't even want to know why you were pulling the heads off your sisters dolls ...and why you remember the smell.....

As for Nasonex's odor, at least here in the US about 18-24 months ago they introduced a non-scented version. It has a bright blue cap instead of the teal one the original one had.

I would have stayed on it, but there is something in that was causing a reaction and unfortunately prescription meds don't have to provide the same information on non-active ingredients as OTC's do. I'd been using saline lavage occasionally and find as long as I do it regularly, it helps as much, if not more then Nasonex for me...but that's with me being allergic to something in Nasonex of course.

I started using a 60cc cath tip syringe with Breeze nasal pillow over the tip, but now I've moved up to WaterPik...with my same Breeze nasal pillow trick (and the bent bit removed from the end of the WaterPik wand). A little canning salt (no iodine, no additives (ie- flowing agents in table salt, which are not good for anyone doing saline flushes, but especially me since they are corn based in the US)) & a pinch of baking soda, add to some warm water and you're all set. The nurse at my allergist office was surprised when I said I was already doing saline sinus rinses when she gave me the instructions last week...seems most people look at her like she has 3 heads or something when she suggests shooting salt water up their nose


Needing Nasonex or similar type sprays is pretty common in xPAP users because of the air flow. My info packet I from my sleep lab had a whole sheet on why something like that may be needed, even if you didn't need it before. I had already been using it, so my only adjustment was to switch to using at bedtime instead in the morning.


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christinequilts
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Post by christinequilts » Fri Apr 20, 2007 2:40 am

frequenseeker wrote: I still avoid sulfites. I think your experience with even the tiniest amounts of corn certainly demonstrates how powerful such allergies can be.
I tie my edema to salt sensitivity. Very hard to avoid salt and believe me I make the effort all the time. (Amazing how some soups can have 100 mg and other 1000mg or more of sodium. )
I have to remember to have something salty once in awhile because I don't use any processed foods-lol...and I can't stand anything too salty (and haven't been for years since I started limiting processed foods). Nowadays anything with more then 3-4 ingredients is pushing my luck.
frequenseeker wrote:About my turbinates, maybe I was a bit extreme in my description. It is my left nostril that seems to be the chronic one. I believe I usually have at least one functioning well enough. I don't think it the cause of the ASV trouble. If I was having continuous flow limitations from that (or any other cause) during the sleep study would thay not have investigated that?
What strikes me as funny is the recommendation from your Adapt titration. It sounded like they used it the entire night at its presets of EEP 4 (I thought the lowest possible EEP was 5?), PS min3/max10 and then told you to use a higher setting at home to deal with pre-existing obstructive events. Isn't the entire purpose of an Adapt titration to titrate to proper EEP to eliminate OA, then see what the Adapt is going to do with any centrals that may be there? I guess I don't see what the purpose of playing with the EERS all night was if obstructive events were not adequately addressed to start with? Anyone else? Its like they totally ignored any obstructive events, which is were flow limitation would come in.

Did they ever give you more information then what you posted about your results from any of your PSG's? Did they ever see any central apneas or hypopneas? The only thing I remember was from your first BI titration, when they noted instability in breathing in unstable non-REM (which isn't that suppose to have somewhat unstable breathing?) and with BiPAP, which is why they didn't recommend you use it, wasn't it? And now they are recommending BiPAP when that was the biggest indicator of instability? It just doesn't seem like they are even being consistent in their recommendations and are just throwing whatever at you and seeing if it sticks. If it were me, I'd be questioning the treatment and its rationale.
frequenseeker wrote:They know the pressure at the nostrils, and if there was an interference it would have affected the whole algorithm, no?
No and yes. They don't know the pressure at the nostrils if the interface was affecting the Adapts ability to measure. Where does the pressure sensor line end, FQ? At the cuff on the end of the machine hose where you connect your mask, right? Which is some distance away from the mask on the Swift, as well as the Vista & Activa. That's were they know the pressure at, and the pressure in the interface is projected based on which mask is selected & the impedance it calculated during LC. Do you see how switching out masks after running LC can screw things up? The Adapt thought it was going to be working in metric and you gave it an imperial ruler without telling it when you switched to the Swift!
frequenseeker wrote:Aside from any other discussion that can be made about my sinus/nasal situation there are three points behind my mentioning it: 1. the initial Learn Patient might be affected by the initial congestion/swelling even if it gets better later
The Adapt has been programed to handle minor changes throughout the night, as any CPAP is, to maintain the correct pressure. I'm sure its program includes variables for expected changes in how full the humidifier is (which the sensor tube bypasses, so it probably not as big of an issue) and normal changes in nasal congestion throughout the night. It does make adjust throughout the night, its not like it takes a snap shot of what happening now and says this is it for the night. That's the adaptive part of ASV.

The primary Learn Patient phase happens only after running LC, which most people don't do nightly. Otherwise it would have to do 'Learn Patient' every time you took too long of a bathroom break (am I only one who occasionally gets detoured to their computer on the way back to bed?) The only time the Learn Patient phase was at all evident to me was when I used the Swift, the rest of the time it really doesn't feel any different from the moment I put it on right after LC to any other time.
frequenseeker wrote:2. if the LP callibrated during congestion and later in the night the congestion got better, would that affect the algorithm, and
FQ, if you think congestion is going to mess with the algorithm, what was the Swift doing all this time? You can't say nasal congestion is going to screw things up but a highly restrictive mask isn't. And in all honesty, if anyone was having that severe of congestion regularly, they should be using a FFM and seeking treatment options for their congestion.
frequenseeker wrote:3. if swelling was really a problem would it not show up throughout the night in the flow limitation.
I don't know about during PSG, SAG would have to answer that part of it. My feeling is it would take considerable swelling to affect the Adapt, much worse then what you're apparently having (and I did suffer through a head cold a month or so ago, never once considering not using my Adapt). The Adapt is not looking for flow limitations, that is what an auto is looking for as it treats OA events; the Adapt is focused on how much air you are exchanging (TV) and how many times per minute (RR), which together becomes Minute Vent (MV). The Adapt assumes OA events and any flow limitations have been taken out of the equations by a properly titrated EEP pressure, so its no different in how it treats OA event then a fixed pressure CPAP.
frequenseeker wrote:
What do you mean by 'running away'?
I think it was really more a matter of stronger pressure combined with the increase RR. Maybe I had just had some big apnea and woke up to experience the increased response of the machine being carried over for longer than I could sleep through.
The Adapt drops back to its minimal PS rates as soon as it senses you breathing on your own again, it doesn't hold at the higher pressure like autoPAPs do. Let's say I'm breathing along normally, its happy at 12/9 (my settings), but let's say this breath cycle I exhale but don't inhale to start the next one. For the first second, its going to give me inhale pressure of 12, but by 1.5 seconds, its going to start escalating to 13, 14, 15, 16, etc.... Based on my normal breathing rate, it will drop back to 12 exhale around the 3 second mark, increasing to an inhale all the way up to 19 (EEP+10) at the six second mark, repeating changing from 9ish on exhale to nearly 19 on inhale as needed. As soon as there is any slight indication of any breathing effort, the extra breathing support instantly disappears and your back to your normal EEP+minPS.

So there is no 'carry over' at all. What I think you may have been feeling is the backup rate, which from experience with the Swift, acted very strangely and 'overbearing' at times...and not how the Adapt would normally behave if you had a compatible mask. Then I don't even feel the back up rate at all really, and even the change from EEP to +minPS is so gentle, I didn't even feel like I was on BiPAP during my titration, let alone a BiPAP ST...now I can tell its there only if I really pay attention. Could of it possibly felt like you were out of synch with the Adapt, trying to exhale when it wanted to start an inhale half way through? I guess you could have had incidences of high pressure (sounds like a weather report-lol) if it was so out synch and not able to read you well at all, but I still say that's because of the Swift.
frequenseeker wrote:I have thought about trying the Vista with ASV just to see..but my problem with the backup rate could still occur anyway, and I don't want to go there again.
I agree a backup rate in general may not be the best for you, as your one sleep doctor had told you. Backup rates are a necessary evil when it comes to significant central disease; I can't see why anyone would want to risk it interrupting their sleep unless its absolutely necessary. BiPAP may not even be the best machine for you based on continually dismal results combined with how it apparently it destabilized your breathing somewhat on your first BI titration. But I think it would be useful for you to at least try the Adapt with a Vista at your normal settings for 15-30 minutes so you can experience the difference yourself. You don't even have to 'sleep' per se, but lay back & watch TV or something. That is what I did for the first hour of my experiments with the Swift, and what I've done with any mask I've used with the Adapt...I want to know how it feel when I awake before I'm willing to sleep with it. After you've settle in for 10-15 minutes, try holding your breath and see what the Adapt does and if you can hold your breath very long- I'd be interested to know how you do with that challenge personally.

I would think considering your brother is also using an Adapt with a Swift, you would want to do it for him, to make sure he isn't going to run into the same issues you have. I would also hope you would be willing to share your results here, as I have. Maybe you can take what we've learned here back to BI and help them realize the Swift isn't a viable option so no one else ends up feeling like you've felt for the last several months. I honestly don't know how you put it up with as long as you did.

FQ, I understand the doctors at BI told you the Swift 'worked' with the Adapt and you trusted them. Just like I trusted the doctors, dietitians and manufactures who told me I couldn't react to corn maltodextrin. I know I was confused, angry and hurt when I realize just how wrong they had been...and I even felt those same feeling toward myself for having believed them when 'I should have known better' It was even worse when I found a journal article published prior to me going on the tube formula that did show corn maltodextrin in infant formula could cause an allergic reaction in some infants who were highly allergic to corn. I had to accept that in my case, it really is a situation of being the exception to the rule, and what they were telling me was based on the accepted common knowledge of how most corn allergies act.

With the Adapt, we are talking about brand new, extremely complex technology and the manufacture is saying not to use the Swift for a reason. In fact, in the clinical manual, they recommend using only a FFM if at all possible, which is what my doctor recommended and required for titration. My ResMed rep, a CPAP user himself, recommended using a FFM if at all possible, but if not, using one of the other approved masks. His words were basically 'why take the chance of not getting the best therapy you can', and he could not understand how anyone could recommend using a Swift with an Adapt...like he said, "they can say it 'works', but is it really working & doing what its suppose to do?"