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+--- Thread: 18 mths of apap: need help optimizing settings to feel better [ASV] (/Thread-18-mths-of-apap-need-help-optimizing-settings-to-feel-better-ASV)
RE: 18 mths of apap: need help optimizing settings to feel better - JesseLee - 06-08-2018
That is a significant drop in respiratory rate and it corresponds to the time you began ASV therapy, so the results are clear there and that's and excellent observation on your behalf.
Edit: 19 RR is good
Honestly, it's not the wave form I was hoping to see on the flow graph that you zoomed in on, and I don't know how that is going to turn out or if it will resolve itself.
You had addressed in an earlier post about behavioral modifications and that's exactly what I was referring to. I danced around it a little bit because its a tough course, but like you said and i was thinking, with the new mode of therapy you may be better set to take that challenge.
RE: 18 mths of apap: need help optimizing settings to feel better - sheepless - 06-08-2018
JesseLee, eyeballing, the flow rate waveform looks better to me than with autoset. periodic breathing is not as obvious and pronounced. hoping tweaking settings over time plus being more relaxed (respiratory rate down, generally feeling less crummy) will eventually improve things. of course it's all wishful thinking coming from me. yeah, yeah, I'll get there re cbt, eventually, if necessary, but thanks for the encouragement. <grin> . need a lot of that.
RE: 18 mths of apap: need help optimizing settings to feel better - Reznik - 06-08-2018
You should also bear in mind that the long-term safety of ASV has not yet been established.
Short term studies suggest that ASV increases the death rate among people who have certain types of heart disease, even though it worked to reduce their AHI. I assume that longer terms studies are still in process.
To me, this result indicates a possibility that something about ASV stresses the heart, even if it reduces AHI. Until long-term studies are in, I'd only consider ASV after all other options have been exhausted.
See this article for more details:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5490971/
Fortunately, in your case, you can configure the ASV machine to deliver the same therapy as a standard CPAP (or even Bilevel). As long as you don't get FOT/Central Apnea detection you can then figure out if they were the cause of your problems or not.
If you really need ASV, you should probably do it. However, if you don't need, why bother?
RE: 18 mths of apap: need help optimizing settings to feel better - sheepless - 06-08-2018
well I really don't know reznik but I do appreciate the warning. I don't want a heart attack. fwiw, while I might be a likely candidate I have no symptoms of heart issues. knocking wood now. apparently there is a test that must be passed to obtain a prescription for asv but I've read there are questions about the study or studies that req'mt is based on. taking a calculated risk I guess. in any event, I had unsatisfactory results during 1.5 years at a wide range of settings on the autoset. I've a long history of csa. now 30 years and 40 pounds later I'm saddled with mixed or complex apnea, plus periodic breathing documented throughout autoset use. in additon, I'm still exhausted and up until asv have felt so poorly I've been all but disabled. so I've made the choice to try a different modality, one designed for some of my complaints, precisely to see if it is necessary. so far asv has been an improvement. meanwhile, I'm open to suggestions for (safer) alternatives to exhaust. thanks.
RE: 18 mths of apap: need help optimizing settings to feel better - Reznik - 06-08-2018
(06-08-2018, 04:31 PM)sheepless Wrote: well I really don't know reznik but I do appreciate the warning. I don't want a heart attack. fwiw, while I might be a likely candidate I have no symptoms of heart issues. knocking wood now. apparently there is a test that must be passed to obtain a prescription for asv but I've read there are questions about the study or studies that req'mt is based on. taking a calculated risk I guess. in any event, I had unsatisfactory results during 1.5 years at a wide range of settings on the autoset. I've a long history of csa. now 30 years and 40 pounds later I'm saddled with mixed or complex apnea, plus periodic breathing documented throughout autoset use. in additon, I'm still exhausted and up until asv have felt so poorly I've been all but disabled. so I've made the choice to try a different modality, one designed for some of my complaints, precisely to see if it is necessary. so far asv has been an improvement. meanwhile, I'm open to suggestions for (safer) alternatives to exhaust. thanks.
I don't think you need to worry in the short term.
The studies that have been done showed no increased risk for most people over a multi-year period (I think it was a two year study). The increased risk during that multi-year period was only for people who had heart failure and only then a subset that had a particular measurement. And the increase was relatively small. In other words, even for the population who is at risk, the number of additional deaths that could be attributed to ASV was small.
There remains a possibility that a longer term will reveal an increased risk for additional populations. In other words, over a ten year period, all heart failure patients might have an increased risk of death. Over a 45 year period, everyone might have an increased risk of death. On the other hand, longer studies might show no increase, or even a decreased risk of death. We won't know until the studies are done.
I wouldn't worry at all about it killing you tonight, or tomorrow, or even next week. The existing study shows that, for short-term use, you only have to worry if you have heart failure and a left ejection fraction over a certain amount. And even then, the risk remains small.
RE: 18 mths of apap: need help optimizing settings to feel better - JesseLee - 06-08-2018
(06-08-2018, 03:56 PM)sheepless Wrote: JesseLee, eyeballing, the flow rate waveform looks better to me than with autoset. periodic breathing is not as obvious and pronounced. hoping tweaking settings over time plus being more relaxed (respiratory rate down, generally feeling less crummy) will eventually improve things. of course it's all wishful thinking coming from me. yeah, yeah, I'll get there re cbt, eventually, if necessary, but thanks for the encouragement. <grin> . need a lot of that.
I don't disagree with you. Like you, I was wishful for instant rectification of the periodic breathing. Time will tell all as they say.
RE: 18 mths of apap: need help optimizing settings to feel better - Sleeprider - 06-08-2018
(06-08-2018, 04:48 PM)JesseLee Wrote:(06-08-2018, 03:56 PM)sheepless Wrote: JesseLee, eyeballing, the flow rate waveform looks better to me than with autoset. periodic breathing is not as obvious and pronounced. hoping tweaking settings over time plus being more relaxed (respiratory rate down, generally feeling less crummy) will eventually improve things. of course it's all wishful thinking coming from me. yeah, yeah, I'll get there re cbt, eventually, if necessary, but thanks for the encouragement. <grin> . need a lot of that.
I don't disagree with you. Like you, I was wishful for instant rectification of the periodic breathing. Time will tell all as they say.
I had no expectations, but see some small improvements that might add up. For one thing, we've gone from 10 sessions to 7. Periodic breathing is improved, and where breathing irregularities used to lead to an arousal and therapy break, I see some PS working to maintain respiratory rate and volume. Small steps. Not a cure, but it's worth watching and seeing what patterns emerge.
RE: 18 mths of apap: need help optimizing settings to feel better - sheepless - 06-08-2018
"...and where breathing irregularities used to lead to an arousal and therapy break, I see some PS working to maintain respiratory rate and volume.
I can't believe my eyes. breathing irregularities leading to arousal and therapy break. Sleeprider, you may not have meant it the way I'm taking it but this is the first reference I can remember that sounds like what I've been talking about ad nauseum: i.e., a logical if unscientific hypothesis that could explain my unflagged awakenings. but don't worry, I won't hold you to it until and unless a clearer picture and explanation develops.
pointing this out not to 'gloat' or anything like that. I want it to be true so I'm just hoping it works out to be true enough that the machine properly adjusted will help resolve those debilitating therapy breaks. that would conform to all my subjective assumptions. good enough for sheepless work (similar to but even less demanding than the proverbial gov't work). plus it might get me out of cbt, lol.
RE: 18 mths of apap: need help optimizing settings to feel better - mhehe - 06-08-2018
This article pertains to people with HF! Please do not extrapolate it to other individuals not suffering from episodes of Heart Failure!!! I know that I cannot generalize my case to other patients suffering from sleep disorders but my blood pressure is better after using ASV and in general my heart health is better than it was before using the ASV device.
RE: 18 mths of apap: need help optimizing settings to feel better - sheepless - 06-16-2018
12 nights with asv now. still quite sleepy but overall feel soooo much better than with apap. not near as 'hungover' feeling. no more stimulants. getting through more days without naps.
first 2 nights at epap 6-12, 2 nights each at epap 7-12, 7-13, 7-14. last 4 nights at epap 7-15. posting charts from last night which is also the night with the lowest ahi. the 2 longest segments clearly ended with a flagged apnea. sorry for the number of charts but I want to see if others' think there's a pattern of sorts emerging at the end of unflagged segments. except the image of ~3:35 am all the other images are ends of sleep segments not associated with flagged events. periodic and ragged breathing continue. to my eyes it is becoming clearer that the reason(s) for my frequent awakenings is related to disordered breathing. but I'm open to correction. also I'm not sure what to do next to help even out breathing in hopes of reducing awakenings.