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Posted: Sun Jul 02, 2006 11:51 am
by -SWS
Guest wrote:Chuck, that's an interesting question...
The above was me.

I accidentally submitted my post, let alone as guest---even before I had a chance to throw one more morsel of conjecture on the heap (this time regarding the concept of homeostasis and long-term changes in relation to the CSDB-afflicted respiratory drive).

I will cut to the chase and simply say that if I were in your shoes, Chuck, I would eventually experiment to see just how low of a nightly pressure I could get my machine down to, while still achieving adequate results. There is no long-term epidemiology data regarding xPAP pressure effects on anybody's CSDB-afflicted respiratory drive. Not to unnecessarily worry anybody. Just to say that low pressure is good regarding CSDB (the central components) and that we are unfortunately in unexplored sleep science territory here. Good luck!

Arousals vs the Software

Posted: Sun Jul 02, 2006 12:13 pm
by BetterBreathinBob
Very interesting reading all the posts about the data downloaded from the machines, pressure changes and folks always trying to get the low numbers.

The software programs only detect snoring or flow limitations or a combination of the 2. Some people feel better sleeping on a lower pressure or the fixed cpap machines and wonder why! The reason is that a mild hypopnea or apneic event, while being counted in the software may or may not be causing an arousal in your sleep stages. The whole goal behind CPAP therapy is to stop the fragmentation of your sleep and allow the body to spend as much time as possible in the deep restorative stages called delta or stages 3 and 4.

Many times in the sleep lab where I work I'll see mild hypops without arousals and sometimes with oxygen desats.

The bottom line is how do you feel during the day. More rested then before using the theray or still tired? Don't go crazy over the numbers, your subjective feeling of your alertness is more important.

CPAP user for 3 years, sleep tech for 7 years and Respiratory therapist for 20 years.

Keep up the great communication here, it helps everyone.

Bob


Thank you!

Posted: Sun Jul 02, 2006 12:28 pm
by GoofyUT
SWS-

Though empiricism has been my good friend, it hasn't been my most important friend here. For that, you have my gratitude. Regarding lowering my pressures as much as possible, my thoughts exactly. I intend to lower my pressure starting tonight in 0.5 cmH2O increments, to see how low I can go and still maintain my low AHI. I'll keep you posted.

BBB

I certainly wholeheartedly agree that my clinical response is more important than my numbers, and I ahve all along. However, the problem is that though I almost immediately experienced an improvement in daytime drowsiness, as well as alertness, concentration, mood and affect during the day, it was frankly getting demoralizing to wake up in the middle of the night, night after night. So, at least investigating this hypercapnic etiology and the positive gains I've experienced over the last few nights has been a god-send.

Chuck

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): AHI


Posted: Sun Jul 02, 2006 1:41 pm
by Guest
GoofyUT wrote:
Now, I continued with my CPAP trial of 8cm/noEPR/30 min. ramp, and I'm SURE that this has a lot to do with it! But how could a mask make SUCH a difference? I mean, I've always loved my Swift. Its been plenty comfortable, and I've had no leaks or mouth-breathing problems. But in switching back to the Activa, I hit a GRAND SLAM!
I think finding your correct pressure or ideal pressure was your main issue. Your numbers should remain consistently low with what ever mask you use within reason. Just think about the thousands of patients that have non-recording machines, they could be stumbling through therapy with the same problem and when they see their doctor all they can suggest is they increase pressure. Your a perfect example why traditional therapy techniques don't work and/or fail.

While in autopap mode, some masks seem to make it harder for the machine to read you properly, but it doesn't matter when its in cpap mode, its a one-way street at that point. Now your machine doesn't mask events "it" thinks are are more important and respond to them, now it can only READ your events and report the results letting you make the final decision.

Not to beat up on them (even though they deserve it), but Resmed can boast all they want on how superior they think their technology is but when a machine picks up on snore and increases pressure with no limit in sight enough to trigger low pressure hypoapneas, I see that as a problem. An autopap is supposed to detect hypoapneas and respond to them, not be the cause of them. It is the same reason I could not use the Spirit. A bigger problem as I see it is that machine triggers on snore yet doesn't even record them, so you have no idea what it is doing. If that machine is going to trigger on 3 main parameters it should record on those 3 main parameters. You can see this clearly on other machines like the Remstar and PB420e but not on that one, you were left in the blind as a result.

Then I think it may have a lot to do with how much noise a mask generates. If a mask is inherently noisy, it can create vibrations which can easily confuse an autopap. I sometimes wonder after looking at my reports if my UMFF may not be my particular problem. If I go 1cm too much pressure my snore index increases from avg. 19.2 hr to over 280.0hr! I know if I have my starting pressure too low the mask will "whistle" on inhale. I know the Remstar Auto is very sensitive in picking up on snore vibrations, even inaudible ones. The main difference however is how it responds to them. I wonder sometimes if mask generated noise may not be causing false snores. I can switch to a Activa, UltraMirageII and those snores drop dramatically.


Symptomatic/Asymptomatic

Posted: Sun Jul 02, 2006 1:43 pm
by -SWS
BetterBreathinBob wrote: The bottom line is how do you feel during the day. More rested then before using the theray or still tired? Don't go crazy over the numbers, your subjective feeling of your alertness is more important.


I generally agree with this advice. However, depending on just how symptomatic or asymptomatic a patient happens to be, subjective assessment can be a clear indicator of efficacy, highly misleading, or anything in between those two extremes. In the case of a CSDB patient, Bob's advice just may be the best advice ever. I say that because I think I may have noticed a trend whereby CSDB patients tend to be overly symptomatic relative to simple cortical arousal, AHI, and desat indicators. If there's any truth to that (and there may not be) then an overly symptomatic CSDB patient just may need to rely even more heavily on Bob's advice for efficacious treatment than the purely obstructive SDB patient.

In my mind that overly symptomatic manifestation associated with CSDB just may be an indicator that either: 1) yet additional degrading physiologic factors are at play other than cortical arousals and desaturations, and/or 2) the short term degrading transient effects of this CSDB etiology may be more severe than the obstructive SDB etiology yet unmeasurable given their extreme transient or biochemical/cellular characteristics that current PSG instrumentation can not accurately measure.

Chuck, that means that as you experiment with pressure versus AHI, you'll have no idea what mix of obstructive versus central events comprise your particular score. Presumably there will be an undiscernible ratio of these two event types bundled and hidden in your AHI score. And if the central components are more degrading than the obstructive components, then you really need to factor symptoms in perhaps much more heavily than AHI score.


Data

Posted: Sun Jul 02, 2006 2:35 pm
by GoofyUT
Understood. i've always paid a keener eye to how I felt rather than my numbers. However, the numbers ARE a convenient benchmark.

C

Posted: Sun Jul 02, 2006 7:58 pm
by pratzert
WOW... My head is spinning after reading this post.

I feel more and more inadequate when I see a discussion so in depth and with people who, obviously, have been suffering with this problem for so long.

I am forever greatful to all those who post such intellegent information and go out of their way to help those of us who have this disorder.

THANK YOU ALL !

It's become crystal clear that the treatment process is a continous search for the Holy Grail of Sleep Apnea treatment. One must apparently find the perfect combination of machine... mask... Sleep Doctor... DME (Evil).... and Insurance company to make it all work.... and even then... there is always room for improvement in the treatment.

I've been on my Remstar Auto for 6 weeks now... and the Best week, was the very First week. I would wake up at 4 AM and be ready to run a marathon. But it's only been so-so ever since that first week. But the memory or how super I felt the first week, is more than enough to keep me compliant.

My Doc/Sleep Clinic titrated me at 10cm on and I set my machine up at 8-12. But after reading this post, I wonder if I should try experimenting more with my settings, especially if one can have TOO MUCH pressure and actually cause apnea events. That's a scary thought.

I'm going to try to set my APAP up as a straight CPAP at 10cm and see what happens.

I have the card reader and software, and I have very low snore and my AHI have always been less than 5. So I don't what else to expect.

But... what the heck, it seems like it makes sense to try to tweak things a bit and see what happens.

Tim


Posted: Sun Jul 02, 2006 8:11 pm
by Sleepless on LI
Tim,

The most frustrating thing is, even when we finally have it all under control (or so we think), our life factors and/or conditions change and we are back at square 2 all over again, searching yet again for the answer. I don't want to say square 1 because if we've been diagnosed and titrated and already on the machine, we have definitely passed that stage, thank God!

Good luck to you.

Posted: Sun Jul 02, 2006 8:28 pm
by pratzert
Lori,

Yes, I totally agree.

There are so many variable that affect "our condition" but also the effectiveness of the treatment.

For example.... I see a big difference in the pressure required to stop an apnea event if I have been out to a social event and have had several drinks.

I am sure that many other things contribute to the quality of sleep and the treatment of same. Stress.... time in bed.....how hard you worked in the yard that day and how physically tired you might be.

AS I said, I have had a taste of how good it can be.... and am motivated to keep at it. Oddly enough, my brother-in-law has apnea as well, and we compare notes on occasion. Mine is severe and his is mild, but it's still nice to have someone else to talk to .... just like on this forum.

Thanks, Tim

Posted: Sun Jul 02, 2006 8:36 pm
by Sleepless on LI
Tim,

It's wonderful when you read threads like this one where intelligent minds come together to help a fellow apneac figure out a situation they're going through, but then there is the support from people who are going through what you are, too, that is just as important and just as irreplaceable.

This site has such a wonderful human element to it that I think those two factors together make it a godsend for anyone who is going through this. Nice that you have another family member, too, who can relate. Never hurts to have another set of shoulders to lean on and learn from.

Have a nice night.

Posted: Sun Jul 02, 2006 9:42 pm
by -SWS
Tim, welcome aboard. Problematic pressure induction of central apneas has to be somewhat rare in my opinion. I have to apologize to anyone reading this thread if they got the impression this type of etiology was either prevalent or worrisome because of APAP. With that said, I honestly think a fixed pressure experiment at your PSG value of 10 cm is not at all a bad thing. I also happen to think APAP works just fine for most people with OSA.

My own story. Four sleep disorders: 1) obstructive sleep apnea (primarily hypopneas), 2) night time GERD, 3) bruxism, 4) circadian rhythm disorder. Sleep disorders 1 and 2 seem well treated. Sleep disorders 3 and 4 can be somewhat episodic for me, with bruxism not having flared up ever since Rested Gal introduced me to Melaleuca brand dietary supplements over a year ago. She brought my cholesterol, triglicerides, and bruxism flare ups down with one simple piece of advice. Thank you Rested Gal. Before the dietary supplements bruxism flare-ups were perhaps my biggest energy-draining curse. I regulate my circadian rhythm disorder fairly well with Melatonin. Ironically, my sleep apnea has probably been my least problematic disorder of the four, ever since xPAP therapy came along that is. I happen to be one of many patients who actually fare better on AutoPAP than CPAP, although I'm still not sure just why that is. I suppose the lower mean pressure of APAP just may result in fewer sensory based cortical arousals in my case.

Lori, there is no doubt in my mind that the practical advice and support shared on this message board are far greater than the highly esoteric kinds of technical discussion found in threads like this. I'm convinced the human touch is by far the most important of all therapies or medicines. Image


Posted: Sun Jul 02, 2006 11:22 pm
by Yoga
SWS,

By any chance did the Melaluca supplements reduce your LDL? My husband has not had any success in his endeavor to reduce his LDL. If so, what brand do you use and where do you purchase your supplements?

Yoga

Posted: Mon Jul 03, 2006 12:22 am
by Snoredog
pratzert wrote:WOW... My head is spinning after reading this post.

I feel more and more inadequate when I see a discussion so in depth and with people who, obviously, have been suffering with this problem for so long.

I am forever greatful to all those who post such intellegent information and go out of their way to help those of us who have this disorder.

THANK YOU ALL !

It's become crystal clear that the treatment process is a continous search for the Holy Grail of Sleep Apnea treatment. One must apparently find the perfect combination of machine... mask... Sleep Doctor... DME (Evil).... and Insurance company to make it all work.... and even then... there is always room for improvement in the treatment.

I've been on my Remstar Auto for 6 weeks now... and the Best week, was the very First week. I would wake up at 4 AM and be ready to run a marathon. But it's only been so-so ever since that first week. But the memory or how super I felt the first week, is more than enough to keep me compliant.

My Doc/Sleep Clinic titrated me at 10cm on and I set my machine up at 8-12. But after reading this post, I wonder if I should try experimenting more with my settings, especially if one can have TOO MUCH pressure and actually cause apnea events. That's a scary thought.

I'm going to try to set my APAP up as a straight CPAP at 10cm and see what happens.

I have the card reader and software, and I have very low snore and my AHI have always been less than 5. So I don't what else to expect.

But... what the heck, it seems like it makes sense to try to tweak things a bit and see what happens.

Tim
You learn more by reading anyway Tim

If you have the recording ability, look at them daily tabbed charts at the bottom of each daily report. I doubt you'll see much improvement in this discussion if you are already using a Remstar Auto in the auto mode.

Chuck's machine is a Resmed S8 which responds totally different to this CSDB (actually it doesn't respond to it at all) if that is truly what it is, in fact I doubt you'll have the same thing happen as Chuck if using the Remstar Auto. As mentioned before, Remstar's algorithm has a built-in limiting factor so it won't continue and trigger those additional hypoapneas if it goes down the wrong track.

You probably felt better during your first few weeks of therapy most likely due to REM rebound. REM rebound is thought to be caused by severe sleep deprivation, it is where once you hit REM again after going on therapy, your body wants to stay in it. Enjoy it while it lasts but it doesn't usually last more than a few weeks unfortunately. You are not alone, everyone strives to get back there, it's like being born, we can't wait to get out then we spend the rest of our lives trying to get back in

If you want to try what Chuck and I did, here's my suggestion:

Look at your EncorePro 90% pressure, then drop that by 1cm. You'll want to switch the machine to CPAP/CFLE mode then enable the Ramp Starting Pressure. Note: it depends on your model of Remstar Auto, but you need to input a Ramp or LOW pressure even if you don't use it. Newest Cflex versions it is the Starting Ramp. To monitor your results for this test you want that pressure down to about 6 or 7cm. Keep in mind it won't record any sleep details below that value, that is why you are setting it and setting it low so you can see your results.

I haven't seen any change to my numbers using C-Flex or no C-Flex, so it is up to you if you want to test that on/off.

If there is improvement you should see it in lower HI numbers and a lower Total AHI at both 90% found and upper right hand corner of the Daily Events per Hour table data. AI probably won't change if any. Watch what your snores count does. Similarly you can try increasing by 1cm (you may not make it through the night before you drop it).


Posted: Mon Jul 03, 2006 1:31 am
by Snoredog
SWS wrote:
Tim, welcome aboard. Problematic pressure induction of central apneas has to be somewhat rare in my opinion. I have to apologize to anyone reading this thread if they got the impression this type of etiology was either prevalent or worrisome because of APAP. With that said, I honestly think a fixed pressure experiment at your PSG value of 10 cm is not at all a bad thing. I also happen to think APAP works just fine for most people with OSA.
SWS: I agree, I don't think this discussion is about central apneas at all, although the syndrome may manifest itself like pressure induced central apnea does. In the immediate discusssion, it is what I would call pressure induced hypoapnea.

It is the only name I can give it since it only seems to appear with too much pressure. I suspect we could probably see the same thing happen using a straight cpap machine that records data like a RemstarPro2 or an autopap set in cpap mode. Where I've seen this happen, said pressure was 10cm or less or well below where you typically see pressure induced centrals.


I cheated

Posted: Mon Jul 03, 2006 8:42 am
by GoofyUT
I cheated and tried to go back to Auto, and woke up about 1:30 AM and was up for 2 hrs. I did switch back to CPAP at 8 cm and got another 5 hours of DEEP sleep with dreams. I haven't felt this refreshed from a night's sleep in YEARS.

Numbers: AHI=1.4, AI=0.1, HI=1.

In light of Bob's comments last evening, even though my numbers are good, the way that I FEEL after switching back to CPAP tells the story to me.

I'm sticking with CPAP at 8cm, maybe try to titrate it down over time.

Chuck