Ready to go postal

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
-SWS
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Re: Ready to go postal

Post by -SWS » Mon Apr 13, 2009 5:23 pm

Tvmangum, I wanted to show you this case study of heart patient Phil Lovell. Notice in the article below that his episodic AHI spikes correlated perfectly with his episodic heart problems (start reading on page 4): http://www.resmed.com/en-en/assets/docu ... 2050r1.pdf
Above Resmed article wrote: Phil noticed on his AutoScan software that during the period when his heart rhythm was normal his apneas were improved, but on the night when the apneas returned, his heartbeat also became irregular again.
Phil Lovell was initially treated for apnea with an AutoSet APAP machine. However, he started to present episodic central apneas as well, based on his own transitional heart problem. And those episodic heart presentations caused episodic AHI spikes in his AutoSet data.

I'd recommend talking with one or both of your cardiologists, and raising the possibility that you are episodically presenting central dysregulation related to your congenital left-heart insufficiency. That may not even be at the heart of your AHI spikes. But I think that etiologic possibility at least warrants discussion with your doctors. Good luck, tvmangum.

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roster
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Re: Ready to go postal

Post by roster » Mon Apr 13, 2009 9:03 pm

That's a good idea from -SWS to check into the possibility of centrals related to a heart defect.

It might also be something simpler like Positional Sleep Apnea. Could the spikes be coming on nights when you do more sleeping on your back than usual?

Regards,
Rooster
I have a vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes an obscure bit of history.https://www.youtube.com/watch?v=0ycw4uaX ... re=related

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tvmangum
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Re: Ready to go postal

Post by tvmangum » Tue Apr 14, 2009 6:28 am

Thanks for the info. I will contact the local cardiologist with this information. Also, it is very rare for me to sleep on my back. They wanted me to sleep on my back for the clinical titration, but I could not go to sleep and when I finally did my sleep was very restless. They finally let me get comfortable (on my side) and I went right off to sleep.

Numbers from last night:
Pressure: 10.6
Leaks: .04
AHI: 14.8
AI: 3.2
HI: 11.6
Better over the hill than under the hill--especially since my last surgery was a heart transplant on August 3, 2013.

-SWS
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Re: Ready to go postal

Post by -SWS » Tue Apr 14, 2009 7:27 am

Not to completely dismiss the possibility that the Resmed's A10 AutoSet algorithm may be unsuitable for your particular flow-signal patterns----IF your hypopneas are actually obstructive instead of central:
While discussing his sleep study in another thread, tvmangum wrote:It's official. I have just been diagnosed with "Severe OSA/Hypopnea Syndrome." My AHI was 24.10 per hour during 5 hours 56 minutes of sleep. Average O2 sat was 90% with the lowest being 83% during Non-REM sleep and 86% during REM sleep, if I'm reading the report correctly. I had 1 central apnea, 6 obstructive apneas and 136 hypopneas.
Resmed's A10 algorithm will only respond to hypopneas that also happen to have wave-shape flattening sitting on the tops of those amplitude-reduced humps or flow signals. That particular design criterion means plenty of hypopneas will intentionally go unchallenged across the patient population. That situation can and does lead to some patients with high residual HI scores on their AutoSet machines. Some of those hypopnea-intensive patients may be experiencing exclusively central hypopneas, others may be experiencing only obstructive hypopneas, and yet others may be experiencing some unknown mix of the two hypopnea types. My understanding is that sleep science is still trying to better understand various hypopnea-intensive or even hypopnea-exclusive phenotypes in the SDB patient population.

But please pay special note to the fact that I said Resmed elects to do that with their algorithm by design. It's not at all a flaw in the algorithm. But that algorithmic situation does leave room for incompatibility with the way that some minority of hypopneic patients present both hypopneic flow signals and lacking precursor-event snore and flow signals. Resmed correctly views that if "obstructive hinting" wave-shape flattening happens to be sitting on top of a hypopneic wave signal, then it's a safe bet that particular hypopnea was not a central hypopnea. And while the rest of the sleep industry may refer to those particular wave-flattened presentations as "obstructive hypopneas", Resmed at least initially didn't define that as a hypopnea at all (I don't know if they added the signal-flattened or obstructive-hypopnea case to their overall hypopnea definition in recent years). But Resmed relegates that reduced-flow situation as if it were basically the same situation as all the other lesser obstructive "flow limitations"---- also presenting flattened wave shape sitting on top of the flow signal.

In summary, whenever Resmed sees something that looks like a hypopnea, but doesn't have obstructive flattening sitting on top of the wave signal, Resmed very intentionally avoids treating it with pressure, since it might be inherently central in nature (versus obstructive). Resmed thus scores it as a hypopnea and intentionally avoids increasing pressure---to avoid one possible situation of pressure-inducing yet more central hypopneas. That's a cautious statistical guessing game on Resmed's part. In some cases, those are actually patients with obstructive hypopneas who would fare better with a different manufacturer's APAP algorithm----or perhaps even better yet with CPAP. But in plenty of other cases, those really are central hypopneas showing through in elevated residual AHI scores while using the AutoSet's A10 algorithm.


And that last possibility gets us back to wondering if your congenital left-heart insufficiency may be the underlying etiologic cause of your erratically heightened AHI scores. Thus episodic central dysregulation as but one possible explanation. Good luck in your discussion with the cardiologist.
Last edited by -SWS on Tue Apr 14, 2009 8:06 am, edited 1 time in total.

jnk
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Re: Ready to go postal

Post by jnk » Tue Apr 14, 2009 8:06 am

I don't think there is any way to judge how well this machine, or any auto, works for you until it is set up properly for treatment. Right now it is set wide open, 5-20, which is one way to use it for titration purposes, but not for treatment, in my opinion. My numbers would be just as bad if I left my auto set up like that.

For treatment, an auto often needs to be set at, or within a few cm of, the pressure that is normally an effective treatment pressure for you. It is often a matter of reaction time. A wide range is good for comfort maybe, but bad for getting the lowest AHI.

Your doc apparently isn't worried about too-high pressure in your case, since he is OK with your using the machine with the maximum set to 20.

With a ResMed, once you are ready for effective treatment, I would recommend ignoring the HI until you find what treatment pressure gets your AI below 1 consistently for a few weeks. Then I would play to see how low I could get my AHI. You aren't playing that game yet, and it is up to you if that's the game you want to play.

To my mind, the problem is the difference between the way docs like to use autos for titration and the way patients have found from experience that autos work best for them night-to-night for treatment. A doc often likes to set an auto wide open for the purpose of seeing what pressure the machine lands on so that the doc can prescribe that pressure. Good for the doc. And I would play along with that game if that is the one being played. But once it came down to treatment time, I consider the ball in my court, and I would find a pressure that worked for me and keep my auto set in a restricted range to get the best treatment.

But, hey, that's just me.

jeff

-SWS
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Re: Ready to go postal

Post by -SWS » Tue Apr 14, 2009 8:23 am

jnk wrote:I don't think there is any way to judge how well this machine, or any auto, works for you until it is set up properly for treatment. Right now it is set wide open, 5-20
Bear in mind that his residual sleepiness first manifested on fixed-pressure CPAP---not the loaner APAP. So there were no algorithmic factors at play---perhaps suboptimal pressure or the wrong treatment platform given both underlying etiologies (heart patient with OSA). I would also note that a 5-to-20 cm APAP titration is considered "proper" by Resmed. So let's not take cpaptalk informal definition of "proper" set up and especially "normal" (not wildly erratic AHI) response to that AutoSet algorithm as if it necessarily supercedes what the manufacturer persists in defining as proper or acceptable AutoSet set up to this day.

AHI consistently below 5 with the Resmed set at 5-to-20 is actually a "normal" treatment response. Here on cpaptalk we like to optimize our residual AHI by setting minimum pressure higher. That's wise IMHO, but it doesn't come close to calling tvmangum's erratic results as a normal treatment response by even Remed's standards of acceptable residual AHI score while using a 5-to-20 cm setting.

But a big question is whether there are any residual AHI spikes while using an optimal CPAP pressure. If that AHI and best-pressure are genuinely moving targets that neither fixed pressure CPAP nor the Resmed A10 algorithm can efficiently treat, then let's not easily relegate that atypical AHI presentation to either typical obstructive treatment methods or even typical obstructive etiology. This case warrants a much closer look by the cardiologists IMHO.

jnk
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Re: Ready to go postal

Post by jnk » Tue Apr 14, 2009 8:46 am

-SWS wrote:
jnk wrote:I don't think there is any way to judge how well this machine, or any auto, works for you until it is set up properly for treatment. Right now it is set wide open, 5-20
Bear in mind that his residual sleepiness first manifested on fixed-pressure CPAP---not the loaner APAP. So there were no algorithmic factors at play---perhaps suboptimal pressure or the wrong treatment platform given both underlying etiologies (heart patient with OSA). I would also note that a 5-to-20 cm APAP titration is considered "proper" by Resmed. So let's not take cpaptalk informal definition of "proper" set up and especially "normal" (non-erratic) response to that AutoSet algorithm as if it necessarily supercedes the what the manufacturer persists in defining as "proper" set up to this day.

But a big question is whether there are any residual AHI spikes while using an optimal CPAP pressure. If that AHI and pressure are genuinely a moving target that neither fixed pressure CPAP nor the Resmed A10 algorithm can efficiently treat, then let's not easily relegate that atypical AHI presentation to either typical obstructive treatment methods or even typical obstructive etiology.
My experience as an OSA sufferer without a diagnosed heart defect is that my AHI is higher, and I am sleepier, if I set my auto wide open. And I am thankful for the members of this forum who explained to me what they found in their personal experience to be good principles for self-titrating a ResMed auto for night-to-night treatment, independently of the understanding, or lack thereof, of their doctors, and the machine manufacturers, for that matter.

However, someone with a particular heart defect may not find that self-titration approach as effective as I have found it to be, since I am not aware of my experiencing intermittent central hypopneas. Therefore, my experience may not be even remotely applicable.

Just trying to reform my group-think tendencies.

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tvmangum
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Re: Ready to go postal

Post by tvmangum » Tue Apr 14, 2009 8:56 am

Right now I have so much information to digest I'm trying to figure out what to tell the doctor. I am considering just directing to this post or print it and fax.

My head hurts from all the information and trying to understand it.
Better over the hill than under the hill--especially since my last surgery was a heart transplant on August 3, 2013.

jnk
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Re: Ready to go postal

Post by jnk » Tue Apr 14, 2009 9:05 am

tvmangum wrote: . . . I am considering just directing to this post or print it and fax. . . .
Yeah, docs just LOVE that!

If you are seriously considering that, the following beautifully-worded post by -SWS might be the one I might choose to print out to show my doc, since, in my opinion, it contains the most pertinent information:
-SWS wrote:
tvmangum wrote:I am wondering if this has something to do with my heart defect. In case I've never mentioned it, I have a congenital heart defect (bicuspid aortic valve), left bundle branch block and aortic insufficiency. BTW, my "sleep doc" is a cardiologist within the local cardiology practice that I go to. It was my cardiologist at Duke that pushed me to get the original titration study pushed up several weeks to get the benefits of CPAP.

It does appear that the spikes do sometimes occur in cycles.
What I have highlighted in red above can cause episodic spikes in central dysregulation. If that's what's happening, then you may actually be experiencing central apneas and/or periodic breathing on those nights when your home-measured AHI happens to spike. And if a central problem of that nature happens to be inherently episodic (even episodic as a matter of progressive/transitional heart disease) then that issue may not have conveniently manifested during your PSG.

If that's really what's happening in your case, then an ordinary CPAP or APAP machine may not be the best machine for you. You may be better off with one of the adaptive/auto servo ventilation type machines.

http://newsletters.resmed.com/Newslette ... 0911r1.pdf
Above Resmedica article wrote: Patients in advanced stage of left heart insufficiency frequently have central disturbances of respiratory regulation during sleep.
Please don't interpret that as a scare tactic from me. Only to say that your suspicions may be warranted. Perhaps you have episodic central dysregulation because of that congenital left heart insufficiency.
Last edited by jnk on Tue Apr 14, 2009 9:11 am, edited 1 time in total.

-SWS
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Re: Ready to go postal

Post by -SWS » Tue Apr 14, 2009 9:09 am

Well, look at tvmangum's highly atypical ratio of hypopneas to apneas on the PSG excerpt I have above. If we knew that he was a purely-obstructive patient experiencing purely obstructive hypopneas, then we might raise the minimum pressure to manually address many of those obstructive hypopneas. That would be the wise thing to do under those obstructive-hypopnea circumstances. But we are basically bypassing the algorithm when we manually prevent those hypopneas with a manually-set higher pressure. We do that a lot, regardless of manufacturer, because there are many ways that detection and treatment methods employed by APAP algorithms fall short. Slinky is a difficult algorithmic target as well because of her highly variable COPD.

But the long story short is that tvmangum's hypopnea-intensive presentation can be a differentiation and even treatment challenge for both sleep clinics and ordinary APAP algorithms. And here's the mindset trap that I think we want to avoid for any fellow member diagnosed with left-heart insufficiency:

"Feeling sleepy? Erratic AHI scores? No problem! We see that all the time as obstructive sleep apnea patients! We'll get you fixed up in no time with our usual trial-and-error methods of finding a best pressure. Again, this kind of thing happens all the time around here!"

No sarcasm intended. But that's the kind of patient that clearly needs our collective input and at the same time clearly needs to work very closely with his cardiologists.


P.S. Tvmangum, be sure to print out the Resmed clinical information to show your doctors. Rested Gal, maybe you can rescue your verbose friend once again with a summary/explanation that is easier for newcomers to digest?
Last edited by -SWS on Tue Apr 14, 2009 9:59 am, edited 1 time in total.

jnk
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Re: Ready to go postal

Post by jnk » Tue Apr 14, 2009 9:59 am

I think it is always good to remind a cardiac patient to work closely with his cardiologists. I think it is always good to remind a patient to work closely with his doctors, for that matter. And I think it is a great service to point heart patients toward ASVs, since it would be good for them to ask their doctors about those in case they might benefit from them.

At the same time, I think that anyone who has been diagnosed OSA (even a heart patient) and whose doctor is willing to put him on a wide-open auto as a trial, and who then asks in this forum how to get AHI lower to see if that makes him feel better, I think he might benefit from knowing how to do that if he chooses to, in cooperation with his doctors. And I don't think sharing that information is working at cross-purposes or is tantamount to telling him to ignore his related conditions or his doctors.

But I may have missed the point and am probably wrong. That sort of thing happens all the time around here.

-SWS
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Re: Ready to go postal

Post by -SWS » Tue Apr 14, 2009 10:24 am

All great points jnk. I definitely didn't mean to imply that anyone in this thread was telling tvmangum to bypass his doctors. My apologies to you and anyone in this thread who might have misinterpreted my poor wording. Rather, that unfortunate advice has repeatedly occurred on this message board... again and again. That advice in many cases is truly a dangerous caveat. This would be one such case IMO.

I also have absolutely no qualms acknowledging that this message board exists because so many patients walk away from the medical establishment with suboptimal or even entirely inappropriate treatment. That situation doesn't happen once, or twice, or even rarely according to ongoing rampant anecdotes around here. Rather, it seems to happen a lot. So the information presented on this message board has very clearly saved lives IMHO. But as a group, we need to acknowledge that we also propagate incorrect information and sometimes even flat-out bad advice. Collectively, we shore up bad CPAP treatment again and again. Still, as a rule, I think it's wise to not to be overly-complacent about trusting what either the doctors or message boards tell us. Human oversight is the common and prevailing denominator IMO. That, in turn, means it is wise to seek additional opinions---including message board opinions---when things aren't going well. But it is seldom wise to completely bypass the medical establishment when treatment is going poorly IMHO.


--------------------------------------------------------------------------------------------------------------------------------------------------

This link was broken yesterday, so I wasn't able to include it in my previous posts:
http://bipapautosv.respironics.com/

The Resmed equivalent:
http://www.vpapadaptsv.com/
Last edited by -SWS on Tue Apr 14, 2009 11:11 am, edited 1 time in total.

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Re: Ready to go postal

Post by Wulfman » Tue Apr 14, 2009 11:11 am

-SWS wrote:All great points jnk. I definitely didn't mean to imply that anyone in this thread was telling tvmangum to bypass his doctors. Rather, that unfortunate advice has repeatedly occurred on this message board... again and again. That advice in many cases is truly a dangerous caveat. This would be one such case IMO.

I also have absolutely no qualms acknowledging that this message board exists because so many patients walk away from the medical establishment with suboptimal or even entirely inappropriate treatment. That situation doesn't happen once, or twice, or even rarely according to ongoing rampant anecdotes around here. Rather, it seems to happen a lot. So the information presented on this message board has very clearly saved lives IMHO. But as a group, we need to acknowledge that we also propagate incorrect information and sometimes even flat-out bad advice. Collectively, we shore up bad CPAP treatment again and again. Still, as a rule, I think it's wise to not to be overly-complacent about trusting what either the doctors or message boards tell us. Human oversight is the common and prevailing denominator IMO. That, in turn, means it is wise to seek additional opinions---including message board opinions---when things aren't going well. But it is seldom wise to completely bypass the medical establishment when treatment is going poorly IMHO.


--------------------------------------------------------------------------------------------------------------------------------------------------

This link was broken yesterday, so I wasn't able to include it in my previous posts:
http://bipapautosv.respironics.com/

The Resmed equivalent:
http://www.vpapadaptsv.com/
If you go back and read the first post in this thread, you'll note that all of the "cardio" conditions and Central Apnea information wasn't initially available to us......but then gradually came out as the thread progressed. Had it been, I think this thread would have taken a different approach to begin with.
There are still some things that make me wonder about how his doctors are going about this.
At this point, I'm wondering why his "medical professionals" haven't already been trying to treat him with an ASV type of machine.


tvmangum,

How many doctors are you dealing with? And, in which areas of expertise?


Den
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jnk
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Re: Ready to go postal

Post by jnk » Tue Apr 14, 2009 11:15 am

-SWS,

Do think there might be any benefit to tvmangum's asking his doctors for permission to try the auto at a more restricted range before asking for an autoSV, or would that likely be a waste of time?

And do you have any thoughts on which autoSV he might ask about first in this instance, if he chooses to ask? Or is there insufficient info to know which one of the two you linked to has the greater liklihood of better addressing his needs?

Or are those "no comment" questions?

jeff

-SWS
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Re: Ready to go postal

Post by -SWS » Tue Apr 14, 2009 11:26 am

Wulfman wrote:If you go back and read the first post in this thread, you'll note that all of the "cardio" conditions and Central Apnea information wasn't initially available to us......but then gradually came out as the thread progressed. Had it been, I think this thread would have taken a different approach to begin with.
Agreed, Den.

But this thread serves to remind us that unknown or undisclosed medical details can be an important caveat. I'm definitely not picking in what this message board does when it repeatedly pitches in to shore up suboptimal or inappropriate CPAP treatment. Just a reminder that we must be aware and vigilant of the fact that many patients come here with complicated health problems.

There's no question in my mind that this message board is absolutely the best thing that ever happened to many CPAP patients... I'm just saying let's stay on top of all the possibilities---including our own shortcomings---so that we can continue to be the best apnea message board out there. Yes, I honestly feel we are the best apnea message board out there... as long as well-intended rational objections are continually raised about anything and everything around here.

The medical community certainly shouldn't be exempt from critical review, nor should our own collective methods ever be exempt toward never-ending improvement as well IMHO.