Feel Much Worse on ASV: Help?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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justinjustin
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Re: Feel Much Worse on ASV: Help?

Post by justinjustin » Tue Sep 16, 2014 8:15 am

palerider wrote:
justinjustin wrote:I was clearly shown to suffer from ComplexSA + UARS on the PSG, when other labs weren't testing for UARS and said 'your AHI looks fine, so SDB isn't likely.

Then the first few nights of ASV made me feel better than ever possible with/without other xPAP.

Now that I'm experiencing difficulties with the treatment, I've wasted my money and I've been hypnotized? Even having a firm diagnosis after seeing countless other specialists in many disciplines, MRIs, etc would be worth the money.
what's it gotten you? maybe I'm missing something, but it sounds like after all that money, you're worse off than when you started... no?

is it really worth it to feel worse?

and, yes, maybe there was some sort of placebo effect if the 6500$ only bought you a few nights of 'better'.

maybe you shouldn't be on an asv?

maybe sludge, as much as you dislike him, has a point?
ASV or not, I'm not imagining the ComplexSA diagnosis. The centrals, flow limitations and hypopneas are real. And C/APAP don't make me feel better, or they trigger centrals and make me feel worse. It seems like ASV is what's prescribed in cases of ComplexSA; I didn't *want* to spend all that money, but if it seems to make sense then I'm for trying it. The alternative is a life of being barely functional. Regarding Sludge, it's not that I'm adamantly disagreeing with the points he makes, I'm just very turned off by the spiteful, sarcastic and disrespectful tone he uses with people.

Anyhow, here's the graphs you asked for.

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I think my FL in aggregate each night seem pretty excessive as well..

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palerider
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Re: Feel Much Worse on ASV: Help?

Post by palerider » Tue Sep 16, 2014 8:24 am

justinjustin wrote: Regarding Sludge, it's not that I'm adamantly disagreeing with the points he makes, I'm just very turned off by the spiteful, sarcastic and disrespectful tone he uses with people.
I will say, in his favor though, that while he sometimes has the bedside manner of an allegator on special K, he's also got no vested interest in trying to get money out of you, so he has no reason to tell you what you want to hear.

just sayin.

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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Denial Dave
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Re: Feel Much Worse on ASV: Help?

Post by Denial Dave » Tue Sep 16, 2014 8:34 am

+1 Sludge is always spot on in his advice.

if you don't like the tone of his free advice--- go pay your doctor for better bedside manners

just sayin..
palerider wrote:
justinjustin wrote: Regarding Sludge, it's not that I'm adamantly disagreeing with the points he makes, I'm just very turned off by the spiteful, sarcastic and disrespectful tone he uses with people.
I will say, in his favor though, that while he sometimes has the bedside manner of an allegator on special K, he's also got no vested interest in trying to get money out of you, so he has no reason to tell you what you want to hear.

just sayin.

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justinjustin
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Re: Feel Much Worse on ASV: Help?

Post by justinjustin » Tue Sep 16, 2014 3:42 pm

palerider wrote:
justinjustin wrote: Regarding Sludge, it's not that I'm adamantly disagreeing with the points he makes, I'm just very turned off by the spiteful, sarcastic and disrespectful tone he uses with people.
I will say, in his favor though, that while he sometimes has the bedside manner of an allegator on special K, he's also got no vested interest in trying to get money out of you, so he has no reason to tell you what you want to hear.

just sayin.
Understood. I don't want to dwell on flamewars, so I'd like to ask, what is your opinion on the graphs I presented which you asked for? They look pretty choppy, despite using high ASV pressure.

Thanks,
Justin

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palerider
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Re: Feel Much Worse on ASV: Help?

Post by palerider » Tue Sep 16, 2014 4:08 pm

justinjustin wrote:what is your opinion on the graphs I presented which you asked for? They look pretty choppy, despite using high ASV pressure.
I'm no expert at that, sludge asked, and I thought it was a valid request, and with you ignoring him, you wouldn't have seen it. they do match up fairly well with one of the flow types in the chart he posted, and while I've seen that chart before, I don't remember what each waveform is supposed to mean. hopefully, sludge, or someone better at waveform eyeballing will comment.

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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Sir NoddinOff
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Re: Feel Much Worse on ASV: Help?

Post by Sir NoddinOff » Tue Sep 16, 2014 5:18 pm

justinjustin wrote: "Resmed's algorithm is far more aggressive than the PR algorithm in treating FLs. And that can contribute to some people complaining that the AutoSet has a tendency to have the pressure "run away."
I agree that Resmed's algorithm is much more aggressive that the PR methodology. ResMed ASV is a blessing for those ASV users who fit into their circumscribed profile. Others like myself need to tinker with rise times and Shape Trigger/Shape Cycle parameters (read: solely PR). There's also the feature of 'classic mode' humidification which gives me the moisture and temperatures I need to sleep peacefully without a dry mouth. Sorry, ResMed doesn't provide it

Somewhere along the line ResMed made an executive decision to exclude the above mentioned parameters from the clinician's menu. I guess they were shooting for the center chunk of the bell curve where most ASV users are located. Sometimes that statistical gamble works and other times: ffffttttt. It should be noted that ResMed makes a fine machine, however I tend to to compare their limiting approach to an expensive sports car with an automatic transmission vs. a snappy stick shift, ie. PR's model. To sum up: For me, I definitely like being in control of my ASV therapy and I need to be able to tweak the breathing parameters to where they they feel comfortable to me. After all the machine is coaching you on breathing when your autonomic mind is in control (ie. you're asleep) and that's a big deal.

This all is not to say that it's easy to be your own sleep diagnostician but for me it seems to be an effective approach. This is especially true considering how much great ASV help I've found on this forum . Where the hell else are you going to find that much ASV savvy? Your sleep doctor? Gimme a break

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palerider
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Re: Feel Much Worse on ASV: Help?

Post by palerider » Tue Sep 16, 2014 5:46 pm

Sir NoddinOff wrote:]I tend to to compare their limiting approach to an expensive sports car with an automatic transmission vs. a snappy stick shift,
no no, paddle shifters are the way to go! (plus it keeps you from wearing out your left knee joint!

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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BrianinTN
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Re: Feel Much Worse on ASV: Help?

Post by BrianinTN » Tue Sep 16, 2014 11:19 pm

I figured I would get back in on the fun too. Here are some waveforms of mine, with the last two being periods that should be "event-less." I should clarify that most of the nights looks like the last two—technically free of events, although my sleep feels worse and worse when on the ASV. I'm at day #51 on the new ASV, and if I had the energy to get up out of bed (I don't), I'd commit a crime to feel better.

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brendastarr
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Re: Feel Much Worse on ASV: Help?

Post by brendastarr » Wed Sep 17, 2014 6:24 am

I just wanted to comment that I have been able to lower my pressure one point in less than a week by expanding my jaw with a lightwire orthodontic appliance; there is already a gap between two teeth on the upper jaw. I'm wondering if this approach might help you lower the pressure, possibly helping your situation? Just a thought. I've posted lightwire info on this thread: viewtopic/t100489/13-years-of-trying----no-go.html.

I'll be keeping you in my thoughts.

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BrianinTN
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Re: Feel Much Worse on ASV: Help?

Post by BrianinTN » Sun Sep 21, 2014 10:36 am

In response to shortcake's suggestion earlier in this thread, I dial-winged the BPM settings about a week ago. My first attempt didn't change much about how I felt, but my second try has helped dramatically--although I still feel better without xPAP than with. Specifically, despite my BPM being 17-18 while sleeping (so says the machine), I've dropped my backup rate to 10 BPM (as suggested in a PR titration protocol PowerPoint I found) with a Ti of 1.8.

Can users smarter than me suggest why this makes me feel better, and wherher it points to a way forward? shortcake mentioned "breath stacking," but I'm unfamiliar with that.

In case it's relevant, I am usually a shallow breather. My PSGs are almost always hypopneas versus pure OAs.

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