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18 mths of apap: need help optimizing settings to feel better [ASV]
#11
RE: 18 mths of apap: need help optimizing settings to feel better
I'm between docs having been forced to change insurance.  new hmo has just one sleep med doc taking new patients.  35 miles away when at least 2 other sleep centers are within 10 miles.  sleep is just an interest of this pulmonary doc; he's not board certified.  gonna have to pay outside the system to find someone knowledgable I guess.

meanwhile, I've been looking at flows from some of the shorter sleeps.  what I see is a lot of ragged uneven breathing and what look like <10 second apnea-like events.  many of the fragments end (I wake up) after a period of ragged breathing, several short apnea-like "events" or in the middle of an apnea-like event (unflagged because I woke up before it reached 10 seconds).  isn't it possible pap might help resolve these breathing anomolies?   

I've said before that about half my awakening flows end with a flagged event, leak or changing pressure.  the observations noted above make me wonder if many of my unflagged awakenings are also triggered by apnea -  apnea-like events that don't meet the clinical definition - and/or some kind of disordered breathing.

since we have no other theory to explain my many awakenings, can't we attempt to resolve (both the flagged and unflagged partial) events that wake me up?

I'd like to be well-armed to argue for an asv, if that's the conclusion here, for when I find and visit my next sleep doc.

examples of the above observations attached.  also attached is an example of a recent long segment.
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#12
RE: 18 mths of apap: need help optimizing settings to feel better
This is very difficult to interpret and advise.  I don't know that ASV is indicated by the most recent screenshots, but the breathing wave-form is disrupted and we have seen extremely flow-limited and irregular breathing wave-forms resolved by ASV pressure support. Some of what has been posted may be physical motion such as RLS.  This is especially notable at 05:07:50 and 05:08:25 of this chart, but to a lesser degree during the exhale cycle for many breaths. The same pattern is seen in the 05:06 time as well.   Only an observed or video sleep test could say what, if anything happened and interpreting the flow rate wave for things other than hypopnea, flow limits and apnea has a lot of uncertainty. 



[Image: attachment.php?aid=5837]
I tried to put all of this into context with the therapy breaks, but unfortunately all of the detailed graphs are for May 12, and the overall night where we see the whole flow rate line and therapy breaks are for April 29. So the question remains, what causes the therapy breaks?  Most of the people on this thread that I originally discussed or recommended ASV therapy for, had no problem tolerating the CPAP and used it for complete nights in spite of poor results. ASV has wide swings in pressure that can be disruptive, and it only works if you use it. Until we can work out why you break therapy into 6 or more sessions per night, I don't see how ASV works. I do think you may need clinical assessment to get to the bottom of that issue and hopefully also identify a therapy that works and is comfortable.

[Image: attachment.php?aid=5833]
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#13
RE: 18 mths of apap: need help optimizing settings to feel better
When I try to determine why therapy was broken, I look before the break to when I can see that I am asleep. I use a 4 minute window. Then I march through time looking for signs of obstruction (regardless if there is an event flag), changes in leak rate, changes in pressure.

For example: it looks to me that obstructions seen at 05:06:20 and 05:07:40 lead to an arousal in the first figure.
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#14
RE: 18 mths of apap: need help optimizing settings to feel better
(05-13-2018, 08:45 PM)tedvpap Wrote: When I try to determine why therapy was broken, I look before the break to when I can see that I am asleep.  I use a 4 minute window.  Then I march through time looking for signs of obstruction (regardless if there is an event flag), changes in leak rate, changes in pressure.

For example: it looks to me that obstructions seen at 05:06:20 and 05:07:40 lead to an arousal in the first figure.

I agree this captures events leading to arousal and therapy break.  This is the kind of breathing pattern that ASV can mitigate.

[Image: attachment.php?aid=5832]
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#15
RE: 18 mths of apap: need help optimizing settings to feel better
It may just mean that you need more pressure for the obstruction.
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#16
RE: 18 mths of apap: need help optimizing settings to feel better
"Most of the people on this thread that I originally discussed or recommended ASV therapy for, had no problem tolerating the CPAP and used it for complete nights in spite of poor results."

sleeprider, in case the distinction is important, let me clarify that I don't have a problem tolerating cpap. I have used it religiously since the first day.  I have never intentionally slept without the mask. occasionally I doze off without the mask after awakening in the middle of the night, but it's rare. I can no longer imagine sleeping without pap.

sleeping without the mask might indicate intolerance but unless noted I do not sleep through the gaps you see in the flow rate.  99% of them are (wide) awakenings.  awake enough to consciously and purposely turn the machine off and remove the mask.  awake enough that no matter how sleepy I might feel, rolling over and going back to sleep doesn't feel physically possible.  

awake times are filled by lying awake, reading or puzzling, watching a movie, walking around, snacking.

I don't know how to read those squiggly flow rate lines very well so I don't know what "normal" looks like over the course of an entire night.  looking at mine, I see many small and large variations in the waveform while scrolling along through minutes and hours of flow at a 2 minute view scale.  it makes sense that some of these indicate movement, whether a change of position or something more interesting like periodic leg movement.  in  any event, from an uneducated intuitive perspective, such varied breathing doesn't look normal to me.   

I'm with tedvpap.  in the absence of a better one, the simplest explanation for my fragmented sleep (many awakenings) is more of the same - disordered breathing of some kind - even if not flagged.  no idea if any part of sleep medicine conventional wisdom remotely supports this theory, but it seems reasonable in a common sense sort of way.  besides it's the only theory available at the moment.  
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#17
RE: 18 mths of apap: need help optimizing settings to feel better
"awake enough that no matter how sleepy I might feel, rolling over and going back to sleep doesn't feel physically possible. "

I should add that cpap is not the cause of that bad feeling. well, sometimes it is, if pressure gets too high or there's a bad leak. but we're not talking about those, we're talking about all the other awakenings. my impression is that it's the same physical tension that I have long associated with awakening from untreated apnea that keeps me from going right back to sleep.
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#18
RE: 18 mths of apap: need help optimizing settings to feel better
ASV is easy if you can afford it. They are available for $2150 from Supplier #2 if you can get a prescription from anyone that is able to prescribe, and there are non-prescription outlets. Your sleep disturbance level is extremely high, and you may be able to persuade your doctor that you need a change and to prescribe ASV. If insurance is involved, you will have the additional step of doing a clinical titration evaluation to demonstrate ASV is effective and medically necessary. I think there is a good chance it will be life-changing. Your current therapy is clearly not tolerated, and you have been trying to make it work for a long time. It's clear this level of sleep disruption is intolerable, and affects you in many ways in your daily life. The best hope is that you can persuade your physician that something else has to be attempted and try to steer that towards ASV.

I'm sorry I have not been as helpful to you as with others, but it seems everyone has their own manifestation of this problem, and your symptoms and data fall outside my personal experience. I'm left with encouraging you to continue to try to find a solution that lets you sleep undisturbed, and if that is ASV, then we will will all learn from your experience.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#19
RE: 18 mths of apap: need help optimizing settings to feel better
"life-changing". that's what I expected with apap and that's what I'm holding out for.

I have to say that it's a little disconcerting, if I understand you correctly, to be so odd that I'm one of the few (only?) people you couldn't advise. we all know xxit happens. it's just that like, hmmm, how'd I get so lucky? whatever, it is what it is and we'll see where it leads!

I really appreciate you-all giving it the ol' college try. can't thank you enough. not to mention the kindness and support I've found on this site. it has been enlightening and inspiring to read about folks improving their situation with help from similar minded people here. I'll be lurking around and I'll post progress updates if as when they occur.
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#20
RE: 18 mths of apap: need help optimizing settings to feel better
sheepless - I don't know much about UARS but my understanding is that it is an obstruction, but it causes an arousal prior to registering as an AHI. So what you get is lousy sleep due to arousals but the AHI is low. The treatment is more pressure.
In your case, you are getting plenty of AHI even with treatment so my guess is that you need more pressure.
My recommendation is to explore higher pressure to see if you can drive the OA and H down.
If you can drive your obstructive events down to a good level and you still see too much CA or signs of excessive arousals then it is time to try more sophisticated machines (which I have no experience with).
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