Resmed VPAP Adapt SV - for Central Sleep Apnea

frequie wrote:I had considered coming to your center to benefit from your expertise and insight, as suggested by Rested Gal, but now it is clear your bias would interfere with the opportunity for scientific and responsible observation and diagnosis.

Responsible observation and diagnosis. Now that's just terrific. In TMOAT over there at TAS, there were numerous posters (including yourself, for that matter) saying that much of that stuff was too complicated for them to understand. And I must've said a million times that if (1) you don't fit the picture, and/or (2) you do this unmonitored, you can get into big trouble.

For instance:

deltadave wrote:Let's try looking at this from a different angle.

There's 2 types of CO2 washout:

(1) The built-in mask and system leaks that are an essential component of normal CPAP/BiPAP operation.
(2) Undesirable washout if you're trying to apply increased FICO2 to treat Complex SBD or central apnea.

If you don't have CSBD or CA, trying to use increased FICO2 therapy will not help you. It will harm you. Not might. Will. No question. None. Zip. Nada. And potentially hurt you real bad.

Normal FICO2 sitting around here is 0.04%. In a normally operating CPAP system its 0.04%. In a leaky CPAP system it's 0.04%. Standing outside facing on oncoming hurricane it's 0.04%.

CO2 WASHOUT IS AN ESSENTIAL COMPONENT OF NORMALLY OPERATING CPAP SYSTEMS!! THAT'S WHAT'S SUPPOSED TO HAPPEN!!!

Just for laughs, I put on a mask, ran the CPAP at about 5 cmH2O and occluded the exhalation ports. Monitored FECO2. (Yeah, I got all that stuff). It went from 40 to 51 in 3 minutes. That's bad. If you don't how how bad that is, then you shouldn't be playing around with this. If you do know how bad this is, then you won't be playing around with this.

When that article refers to CO2 washout, it was only a concern when they were running an increased FICO2 system and trying to make it stable.

CO2 washout normal system=good.
CO2 washout in controlled FIO2 system=bad

And to repeat, you can't do this yourself.

I agree with Guest above, if this isn't resolved in about 2 minutes, take both threads out completely.
deltadave

And stop all the "It must be you, it can't be me" stuff, we've been down this road before, too.

deltadave wrote:

frequie wrote:I don't know why that fact provokes such a strong response from some people.

That's easy. Because sooner or later somebody WILL inadvertently create an effective system, and when Vd=Vt, a tragedy of catastrophic proportions will result.

Not everybody can afford to go to Massachusetts or buy an AdaptSV, and most people, if not all people, are looking for immediate relief, so a lot of people are going to say "Oh look, plug up the mask holes and all my problems are solved." And if they do, then despite your disclaimer of "have your doctor read the CSBD paper", then you're going to have to take the responsibility if anything goes wrong.

Snoredog wrote:Smart Alec Guy wrote:

You've got poor old Mango over at TAS plugging up his mask and you haven't the slightest idea of what's wrong with him, including the extent of his co-morbidity.

I know what's wrong with him, he needs a labotomy!!

It's clear that Mango has a myriad of problems, and that he is attempting to raise his pCO2 based on your advice, so tell you what. You explain to me what his major medical issues are, what effect raising his CO2 will have on them, and how high his CO2 will end up, and then come back here and we'll talk observation and diagnosis.
SAG

SAG, I certainly don't want to put you out on a limb this morning, so I'm just thinking out loud. If you have an opinion, feel free to express it. I'm only writing this due to your recent post where you express concern about self treating co2 washout, which I may be doing at 6cm. (see below)

My initial sleep study had 22 CA's, 82 Hyp's, no obstructives.

2nd study at 5cm 15 min time, 0 CA,s, 3 Hyp
6cm 190 min 2 CA's and 1 Hyp
7cm zero for everything for 83 min
8cm zero for everything for 74 min

At 8cm I ws having "forget to breathe" feelings.

moved down to 6cm and it helped to eliminate those. (didn't plug mask)
slept 4 hrs off and on...1 to 2 hrs at a time..no bad..

New sleep doc has read my studies and says I will be easy to treat because he thinks I'm having hypopneas, rather than CA,s.

If you rather not comment, I understand. tks..bob

-SWS wrote:I also had the very good fortune to talk with Lubman via PM. His posts show up much earlier in this monster thread as well. I was absolutely elated to hear that Lubman eventually received a doctor-attended ASV and EERS (CO2 rebreathing) titration that yielded very good results. Recall from this thread that Lubman and his doctor first attempted a home-based ASV titration. That ASV home-based titration did not seem to suffice. By contrast Lubman's lab-based ASV/EERS titration struck gold. Lubman mentioned the doctor attending his recent sleep study determined these three therapeutic factors yielded "dramatic" improvements: 1) ASV, 2) EERS, and 3) sleeping on his side.

When "You've got to sleep on your side" becomes a part of the treatment regimen, a couple of red flags go up, and I think a little closer scrutiny of the results should be undertaken before we label this a "dramatic improvement". All the PSGs should be laid out in a row, and then comparisons can be drawn.

The first implication is that supine sleep still remains an unacceptable option. If there was at least some improvement there, it would be interesting to see how much, and also to try to determine where and why there were suboptimal results.

We should also compare all results (no intervention, CPAP, BiPAP, ASV, ASV w/EERS, etc.) with an eye on sleeping in the lateral position. I don't recall seeing if Lubman had demonstrated positional dependency, but again, these results should be closely scrutinized and put into context. If there were few events in the lateral position during diagnostic, then what was really accomplished?

Finally, there was another variable not completely accounted for. Boston is at sea level, Lubman lives about a mile higher. If much of his CA was attributable to Periodic Breathing from High Altitude, then what would really be needed would be a baseline study in Boston before bringing the band out. If much or all of the CA disappeared at sea level, then you need a whole new plan.

The acid test would be get PSG with all this stuff at altitude.
SAG

bluegrassfan wrote:SAG, I certainly don't want to put you out on a limb this morning...

No problem, I'm trying to learn to come out of my shell and express my feelings.

What specifically is your concern? The 2 CA at 6 cmH2O, or the 22 CA in the diagnostic study?

CAs are routinely generated post-arousal as a compensation for the brief hyperventilation that may follow the arousal. I mean, take 6 really deep breaths (do this sitting down, BTW) and then relax. The urge to breath again doesn't happen for a while. That was technically a central apnea. NBD, right?

2 CA ain't worth mentioning. 22 probably ain't a big deal either. If you get and look at your sleep graphs, and if the CAs are occurring during periods of sleep fragmentation, then it is likely they are post-arousal and a normal response.

The central apnea that occurs in CSBD or CHF/CSR is perpetual. Once it starts, you run off dozens at a rate of about 40-60/hour as each central sets up a cascade that generates another.
SAG

For the record, I have never, I repeat never advocated blocking all vent holes. When I did it for myself I did it to half of them (on a nasal (swift) mask leaving the mouth available). Mango is also not blocking all holes YI.

Perhaps you missed this detail.. I am sure you are not meaning to distort the facts. Otherwise it could look like you are blowing things out of proportion just to support a sensationalistic smear campaign. SAG, I am sure you have only the best professional motives in mind.

When I was titrated at Boston, they measured my CO2 with and without the EERS. What I am using now has been measured, monitored and verified. It has made a huge diffference in the quality of my life.

Interestingly, ResMed is coming out with a nonvented full face mask! Now that would make me nervous, to wear it with no recourse to mouth should more access to air become necessary, to be so totally dependent on the pap system...

BTW, I just had my 4th night in a row without the big early am back pain and vasospasms/apnea episodes I had been having on the ASV.
(I have been using cpap 10.4 pressure, and the EERS setup: nonvented swift with vent at the other end of the mask tube and a short length of additional tubing.)

The REM apneas are the most challenging to address. Do you have any suggestions for those, SAG?
[/b]

Frequen, I think SAG understandably feels strongly about this CO2 issue because it's all about public welfare and his profession as a respiratory therapist and sleep lab manager. I'll acknowledge that I think routine suggested therapy tweaks brought out on these message boards are absolutely indispensable to large numbers of patients: mask adjustments, data monitoring, even necessary pressure tweaks. And I personally like learning about and discussing medical theory. But when it comes to suggesting that any patients plug mask holes in pursuit of experimentally treating CSDB, then I personally think we've crossed over to advocating self-experimentation in the realm of what even mainstream medicine acknowledges as "unknown" territory.

So I have to confess. I am personally not a fan of advocating the plugging of exhaust holes in masks. The poster mentioned on TAS does have an entire variety of comorbidities, including narcolepsy. And I distinctly recall that poster having subjectively ascended then emotionally and quite bitterly plummeted with each xPAP modality experiment his various doctors attempted throughout the years. That is definitely not a patient to be treated on a message board in my opinion, let alone treated in the realm of advancing medical theory. No patients should really be treated or diagnosed on a message board in my own opinion. Yet I also acknowledge how many patients here have benefited from suggestions for routine therapy tweaks---patients who would have otherwise languished in poor health and non-compliance. Such a fine line to discern regarding public welfare... And such a fine line to ethically walk for those who feel compelled to help.

-SWS wrote:Frequen, I think SAG understandably feels strongly about this CO2 issue because it's all about public welfare and his profession as a respiratory therapist and sleep lab manager.

If we methodically analyze all of the drawn out debates that have occurred on this message board, I suspect we will find that almost all of them evolve from strong feelings about public welfare. The people here and on other apnea message boards clearly care about one another. They just don't always agree about what is best for the welfare of others.

My concerns and best regards to those who take it upon themselves to help others on patient message boards.

Snoredog wrote:
Smart Alec Guy wrote:
Quote:
You've got poor old Mango over at TAS plugging up his mask and you haven't the slightest idea of what's wrong with him, including the extent of his co-morbidity.


I know what's wrong with him, he needs a labotomy!!

It's clear that Mango has a myriad of problems, and that he is attempting to raise his pCO2 based on your advice, so tell you what. You explain to me what his major medical issues are, what effect raising his CO2 will have on them, and how high his CO2 will end up, and then come back here and we'll talk observation and diagnosis.
SAG

my advice? oh let me clear that up, I don't even visit that board, haven't in years, only advice I have ever given him when I did was I thought he had a screw loose that needed tightening From what I can tell it is stripped.

I ran across this note from a Respiratory lecture I once saved to disk,

An increase in plasma Pco2 will directly and indirectly activate peripheral chemoreceptors. It'll directly activate those that are sensitive to Pco2. Recall the carbonic anhydrase equation and notice that an increase in Pco2 will yield an increase in plasma [H+], i.e., a decrease in pH. Thus an
increase in Pco2 will be detected by plasma pH receptors due to the change in [H+]. An increase in plasma Pco2 will also cause CSF Pco2 to increase. Since CSF contains carbonic anhydrase, the increase in CSF Pco2 will cause a decrease in CSF pH. This will be detected by the medullary chemoreceptors. The net response to the high CO2 will be an increase in respiratory rate and depth.

I think it is nearly impossible to completely block all the exhaust holes on a UMFF mask making it non-vented based upon its current design. It has no flapper style entrainment valve, it has a series of "slots" that run the circumference of the swivel elbow. With the loss of cpap pressure you breathe through these slots.

I tried to block 2 holes on my UMFF once with tape, all it did was cause me to breathe more rapidly and/or hyperventilate, in any case I couldn't sustain it for any amount of time, so for me retaining more CO2 didn't have any impact.

Personally, I think central apnea is a normal defense mechanism/response to control respiratory factors we are totally unaware of. While this may be due to a dysfunction of one of the other respiratory control chemoreceptors for what ever reason that may be.

from the same lecture notes:

other factors that can alter respiratory rates:
Pain and emotions.
Irritating physical or chemical stimuli in the respiratory tract.
***Overstretch of the lungs -- activates lung stretch receptors which act on brainstem centers to cause exhalation and prevent inhalation (this is known as the Hering-Breur reflex).
BP changes as detected by carotid and aortic arch baroreceptors. A decrease in BP can result in an increase in respiration rate/depth.
Changes in plasma and CSF Pco2, Po2, and pH.

*** is this not what happens when under pressure induced centrals? Logic says too much pressure (from cpap for example) causes overstretch of the lungs triggering the stretch receptor eventually preventing inhalation, is that not what a central apnea is?

Personally, I don't consider myself as fully having CSDB or CSR or anything close to that severe, my case probably very mild at best. I do know without the machine, I can spend what seems like an hour falling asleep from "forgetting" to breathe (best way I can describe the feeling, are these onset centrals???). Other times like trying to nap on the couch without the machine, my airway will slam shut which is totally different feeling.

For me it could very well be hereditary, my father died of sudden cardiac arrest at age 51 (almost my age, trying to outlive him if I can, but I do have an ear crease). I know my 88yr old mother keeps a brown paper sack by her side at all times along with her bottle of nitro. She is not on supplemental oxygen. But when she gets excited (just from a visit from me) she can't catch her breath, she grabs that brown paper bag and re breathes in it for a few minutes and then she is fine. At other times she grabs her nitro. I know she has CSR as she has had at least a dozen cardiac arrests since she was 60, her Cardiologist says she only has about 10-15% of her heart function left. She has since 60 only been able to sleep in a recliner.

After trying that experiment myself, I don't think anyone should block off the holes on their mask, but I do like reading and hearing the results of monitored experiments because manipulating CO2 levels do make sense if you are a lazy breather, but getting the timing down for that is difficult.

I know before my OSA had gotten really bad and before my first stroke, I used to get a sharp pain like a charlie horse like you get in your calf in my neck that would run down from below my ear (in the neck carotid area) down the neck to above the heart, don't know if it was a cranial nerve (vagus nerve) causing that or not, sure hurt like hell. I know it would put me out of action working in the shop for about an hour even after popping a couple aleves. I've had several ultrasounds of the carotids and nothing was ever found.

Maybe what we need is an electronic cpap mask that is tied to the machine which monitors CO2 levels and the machine then controls the level of CO2 retention. So if you start getting lazy with your breathing the machine sends a signal to the mask to retain more CO2 which manipulates the Respiratory control to force a breath.

I don't know why this isn't doable in today's technology. How hard can it be for adding a circuit in the machine that monitors CO2 levels?

Again, why is everyone talking about blocking ALL the vents??

1. My initial DIY experiment, which I did on myself and NEVER recommended to anyone, involved blocking half the vents on the swift.

2. I blocked all of them at a later date just to try that out WHILE AWAKE, and I lasted about 3 minutes, having hyperventilation and lots of discomfort. This suggested to me that if something was interfering too much with adequate venting (like bedclothes, or the cat, lying over the mask holes) a person would be likely to wake up and save themselves before they got damaged. (We're not talking about extremely debilitated, comatose people here.)

3. My current CO2 rebreathing needs were assessed in a lab by competent professionals.

4. I do have a full official and functional vent in the system.

5. If you are irritated by Mango, don't read his posts. He has lots of problems but he is aware of them and appears to have followed all sorts of medical direction and prescriptions faithfully. If that advice has failed and he is trying other ideas, he is entitled. He doesn't verbalize very well and it is hard to follow his thoughts but that doesn't invalidate him as a human being. Again, if you are annoyed when reading him, don't read him.

6. I will say it once more: I do not suggest to anyone to block vents. I suggest to them that CO2 needs can play an important role if a person has been feeling worse on cpap. I encourage them to learn more and let their doctors know that the Beth Israel doctors are glad to share information, review data and hold training sessions. I don't see anything in this paragraph that is incompatible with message board postings or concerns of public welfare.

Now if someone disagrees with the concept, methods, or science behind either EERS or ASV (and SAG, it seems you are upset about both), let's have some healthy discussion and review of facts.

Don't shoot the messenger (me!), and please stick to the facts (as I listed some above).

After all, I posted looking for more input, because I was finding gaps in the information presented to me as a prescribed user of the ASV and wanted, in the interest of public welfare as well as my own, to help this therapy be properly and completely analyzed and understood.

SAG...I wondered if 2 CA's amounted to a lot, but didn't know. I'm more concerned about eliminating the 22 CA's. When I go for my first appt with my sleep doc in 2 weeks, I'll try to find out more about what you wrote in the last two paragraphs. I don't know how to do the "quote" thingy or I would reference them. Anyway thanks, you have made me feel better about my Sleep apnea, even though it's only your opinion. In the meantime I'm gonna keep doing what I been doing...bob [/quote]

OK, what I mean is that there are plenty of things that disturb sleep, and following a sleep disturbance (an arousal), there may a brief pause in breathing following a little hyperventilation. In those cases, the problem isn't the central apnea, it's the thing that caused the central apnea. This could be such things as significant sleep fragmentation and poor sleep efficiency (which you showed on the diagnostic study), RLS/PLMs (which you showed on the diagnostic study) and perhaps some sleep-onset centrals, which are a normal phenomenon (which we also covered a bit ago).

Further, that they all disappeared during titration (2 is as good as none) certainly suggests that a worrisome source (like CSBD) is simply not in the cards. The CSBD centrals tend to get worse with CPAP, not better.

The (a) bigger question is where the heck your REM went. Hmmm, RG usually picks up on stuff like that. She'd say something like

rested gal wrote:

bluegrassfan wrote:How did the sleep lab eliminate my apneas at 8cm, yet I can't sleep with the equipment they did it with?

I don't think it's a matter of their equipment. I think it's more a matter of possibly an incomplete picture of your sleep and what pressure might be needed. The numbers you posted indicate you were never in REM during the titration. You may be hitting REM at home. Apneas and hypopneas are more likely to happen during REM for most people. The titration never got to see you sleeping during worst case scenario...on your back AND in REM.

I'm not a doctor, but I don't think it's such a good idea to back down from the prescribed 8 cm from the sleep study. Even more than 8 cms might have been needed if they'd ever been able to see some REM during the titration.

I think I'd want to use an autopap to see if more pressure were needed sometimes during the night at home. If I couldn't have an autopap, then I'd probably try a week of 9 cm and a week of 10 cm to see if either of those made me feel better.

Another question would be, what was your sleep architecture in the diagnostic? Any REM there?
SAG

Frequen, please know that I personally think SAG's earlier post was disrespectful and unprofessional. Please also know that I have come to value your views and immensely enjoy your friendship over the years.

SAG, looking back at your earlier post here and your disrespectful movie-title wise-crack over on TAS.

-SWS wrote:Frequen, please know that I personally think SAG's earlier post was disrespectful and unprofessional. Please also know that I have come to value your views and immensely enjoy your friendship over the years.

SAG, looking back at your earlier post here and your disrespectful movie-title wise-crack over on TAS.

Hey wait a minute, PSG titrations are nearly ALWAYS off, and we are NEVER supposed to follow their findings!! so why is this different

Snoredog wrote: Hey wait a minute, PSG titrations are nearly ALWAYS off, and we are NEVER supposed to follow their findings!! so why is this different

My PSG was right on the money.

Besides, you forgot to capitalize the word "someday" in your tag line. If science ever catches up with you it's going to be the little version of science, let alone on a little day of the week, unless you manage to get that case squared away first.

Don't ask me why the word "was" is the only uncapitalized word in my own closing line. Hmmm... I forgot to capitalize the word "was" and attendance that day was relatively "little".

-SWS wrote:Frequen, please know that I personally think SAG's earlier post was disrespectful and unprofessional.

Yeah, well, I tried to be "respectful" and "professional" for about 2 dozen posts during TMOAT, but when that failed, a few other approaches came into play, and frankly, decorum is the least of my concerns.

The real issues are responsibility and culpability. The whole concept of arbitrarily reducing mask exhaust rates and expecting it to predictably do anything is absurd. And then that you could somehow match up this supposed "panacea" of SBD treatment to a patient who might benefit from enhanced FICO2 (don't forget, if you're lucky, that possibility would be 5 to 1, but could be up to 50 to 1 or more) based on "if people have felt worse on cpap, that might be solved with CO2 approach." That's NONSENSE!! The reason 9 out of 10 people feel poorly is because their sleep efficiencies are awful or a similar issue, not because of CSBD. But taping the exhaust ports shut becomes attractive because it's quick, cheap and easy, appeals to people who are susceptible and distraught and willing to try anything, they don't have to change any of the things that would really make a difference and/or go out and secure real help.

The incessant "well, you should fly to Boston" or "read the paper" only adds false credibility to this hairbrained scheme, and suckers more unsuspecting people into it. In the current thread there on TAS alone, there's 3 people who are saying that they are doing or considering that concept, none of whom are appropriate candidates anyway. BUT...

Does anyone really know how many people who are playing around with this and not posting? Dozens? Hundreds?

You don't know, and you have no control over it. And then my point there was that once you start to put numbers up, then the possibility of someone really screwing it up starts to rise, and it's only a matter of time before a catastrophe occurs. Half the people who visit these boards don't even know how many exhalation ports they have, all they see is "close 'em up and you'll feel great!" How can you expect people that are unfamiliar with these concepts and equipment to be doing the right thing?

Is frequie ready to accept responsibility for that?
SAG