ASV questions and concerns

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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nmbugs
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ASV questions and concerns

Post by nmbugs » Tue Feb 09, 2016 3:01 pm

It has been a long time since I posted here and in the past I have gotten some wonderfully useful information, especially from Sludge (who figured out I had a shunt well before my doctors!!).

Anyways, let me give an update on what is going on. I have been off bipap since Nov 2014. The reason I stopped was my doctor reported to medicare that bipap was not helping. For whatever reason the last month and a half of pap therapy, I was having real bad chest pains and felt like I was constantly suffocating. My bipap was documenting a bunch of "apneas" not obstructive, which my doctor said was probably centrals. I was supposed to follow up with more testing to confirm but that same month my husband was in a coma with hantavirus cardiopulmonary syndrome (if you don't know what that is, here is our news story: http://newsok.com/article/feed/781841 ) and sleep testing wasn't my top priority.

The last year I was hardly sleeping and when I did sleep it was horrid. So last month I decided to do yet another sleep study. Sadly the repair of the ASD didn't stop the need for supplemental oxygen because the delay in diagnosing it damaged the left side of my heart. It also didn't prevent the pulmonary hypertension. It did thankfully prevent (at least so far) the development of arterial pulmonary hypertension (as my pulmonary artery has reduced in size since the repair- so that is a huge plus ).

They started the test without oxygen and I of course went down to the 60s. I had 3 centrals and 187 hypopneas in the first part of the study which was 2 hrs and 20 min. So then they started bipap and in 4 hrs 30 mins I had 81 centrals and 116 hypopneas. During this time I had the severe chest pains and felt like I couldn't breathe. They documented PVCs in my ekg (not sure if that was what was causing the chest pains- nobody has said). They chest pains let up substantially once they added my oxygen back to the bipap and I turned on my side.

The doctor originally was hesitant about trying ASV because of my heart problems but since my LVEF at my last echo was 60% he decided to go ahead with titration this week. My husband is concerned because of what he has read about ASV machines worsening heart failure. I told him I thought that was for congestive not left sided heart failure. Mine has to do with the heart not relaxing, at least from what I understood from my heart doc. That echo showed impaired left ventricular diastolic relaxation with an E/e ratio of 10.

I gave my heart doc the sleep study showing they wanted to try ASV. He had never heard of that therapy, said he would look into it. Since he never called back I would assume it is no big deal. To ease my hubby's concerns I have a call into my heart doc and thought I would post these concerns here in case someone else has experience with this machine and similar health problems. I am so tried of not sleeping and the bipap helped a lot for a long time, then all of a sudden started causing problems . I just want to get a good night sleep again before I completely loose my sanity.

Oh and my only question is how the ASV is different from Bipap? I have read the links but I mean from how the user feels. Is it hard to get used to or will I really not notice any difference.

Thanks so much for any help or suggestions.
Racquel

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Since my machine doesn't appear to be listed in the selection:
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Julie
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Re: ASV questions and concerns

Post by Julie » Tue Feb 09, 2016 4:26 pm

ASV machines are used when central apnea is diagnosed as regular C/Apap machines don't treat it. Bipaps are 'regular' machines, but geared to people with higher pressure needs (e.g. high teens or 20's).

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palerider
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Re: ASV questions and concerns

Post by palerider » Tue Feb 09, 2016 4:41 pm

nmbugs wrote: The doctor originally was hesitant about trying ASV because of my heart problems but since my LVEF at my last echo was 60% he decided to go ahead with titration this week. My husband is concerned because of what he has read about ASV machines worsening heart failure. I told him I thought that was for congestive not left sided heart failure. Mine has to do with the heart not relaxing, at least from what I understood from my heart doc. That echo showed impaired left ventricular diastolic relaxation with an E/e ratio of 10.

I gave my heart doc the sleep study showing they wanted to try ASV. He had never heard of that therapy, said he would look into it. Since he never called back I would assume it is no big deal. To ease my hubby's concerns I have a call into my heart doc and thought I would post these concerns here in case someone else has experience with this machine and similar health problems. I am so tried of not sleeping and the bipap helped a lot for a long time, then all of a sudden started causing problems . I just want to get a good night sleep again before I completely loose my sanity.

Oh and my only question is how the ASV is different from Bipap? I have read the links but I mean from how the user feels. Is it hard to get used to or will I really not notice any difference.
tell your husband, and doctor to take a chill pill, and read the rebuttal of SERVE-HF... it really was a crap study. they picked very sick people, treated them poorly, with OLD machines... and then freaked out when a very very tiny number of extra people died...

here's a nice article that pokes a ton of holes in the kneejerk assumptions:
http://www.sciencedirect.com/science/ar ... 9215003505

ASV is a TYPE of bilevel, (bipap is a trademark of respironics) all bilevel is is a machine that gives you a different pressure between inhale and exhale.

the thing with ASV is that they monitor you breath by breath, and respond breath by breath. they're practically magical machines.

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Sleeprider
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Re: ASV questions and concerns

Post by Sleeprider » Wed Feb 10, 2016 9:55 am

After publishing the first study that had the unexpected finding of a 2.5% increased mortality risk for ASV therapy in conjunction with heart failure and LVEF of <45%, Resmed has published an update: http://www.resmed.com/us/en/consumer/ne ... erapy.html

I think you know ASV therapy may have significant benefits for the cohort that does not meet the criteria of the increased risk group, and is by itself a significant mortality risk. I lost my father to HF. As long as you have >60% LVEF you are not part of the increased risk cohort, and there is ongoing research to increase the size of the study to evaluate if the findings may have been anomalous. You are likely better off treating your condition with ASV than risking further heart damage through untreated central apnea. Most users of ASV on the forum report a drop in AHI to near-zero levels, and a much greater sense of well-being and alertness. Modern equipment (Aircurve 10 ASV and BiPAP Auto S/V) is very good in auto mode at reducing periodic breathing (Cheyne-Stokes), central apnea and hypopnea. The forum members often work with new users of ASV to fine-tune settings to minimize events and make therapy more comfortable.

Relax and look forward to improved health and sleep. Let us know if you have any questions once you start. The forum doesn't pretend to be an alternative to your doctor, but there is a lot of valuable first-hand experience here.

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palerider
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Re: ASV questions and concerns

Post by palerider » Wed Feb 10, 2016 4:19 pm

Sleeprider wrote:After publishing the first study that had the unexpected finding of a 2.5% increased mortality risk for ASV therapy in conjunction with heart failure and LVEF of <45%, Resmed has published an update: http://www.resmed.com/us/en/consumer/ne ... erapy.html
they still didn't address the many glaring failures in the test, including the fact that it was conducted with two (or more) generation old machines, that perform sub par to modern machines, along with treatment standards that we here in the forum would call deplorable.

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Sir NoddinOff
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Re: ASV questions and concerns

Post by Sir NoddinOff » Wed Feb 10, 2016 4:49 pm

Thanks guys for keeping on top of that LVEF <45% issue. Thanks PR for that link... where the hell did you find that

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palerider
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Re: ASV questions and concerns

Post by palerider » Wed Feb 10, 2016 6:06 pm

Sir NoddinOff wrote:Thanks guys for keeping on top of that LVEF <45% issue. Thanks PR for that link... where the hell did you find that
I can't take credit for finding that, okcsleepdoc and I were in irc chat and discussing ASVs and treatment, and he brought it up, there are two more ongoing ASV studies that will hopefully provide more data.

after reading that refutation, I can't be very concerned with the panic over SERVE-HF... there's also the actual numbers, if you figure how many people they had in both control and asv groups, and figure the numbers, (which I did) it was a very small number of extra people that died. I think it was 7 more people, out of pools of over 600. yes, it's "statistically significant" but a small number... added to that, their TERRIBLE standards for treatment:
A full face mask was recommended for the initiation of ASV.
Patients were advised to use the ASV device for at least 5 hours per night, 7 days per week. Adherence to therapy was
defined as ASV use for an average of at least 3 hours per night.
we'd pretty much consider that 'not treated' here...

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andycole
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Re: ASV questions and concerns

Post by andycole » Thu Feb 11, 2016 3:13 pm

I am 74 but have only been on xpap since last August - too bad we didn't catch it sooner, maybe my health would have been better. After 3 sleep studies, last one ordered by my pulmonologist, it was found that I had complex apnea( that is combo of central and obstructive apnea). Sleep doctor ordered ASV machine and full-face mask as I routinely end up breathing thru my mouth. Last night I had a 10hr+ sleep and my cumulative AHI was 0.28 and that because of UA's (unknown apnea). I have had zero centrals because of the ASV - that is what it was designed for. I do sometimes have a hypo but they are few and far between.
Hope this helps you and I wish you the best of luck and health.

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