New to ASV therapy, need advice

Hello to All,

I've been looking through this forum for a little over a month and it has been a wealth of information. Thanks.
Brief history
I was diagnosed with Central Sleep Apnea, Opioids probable cause. I spent a month using the S9 VPAP Auto, until I went to my sleep doc for the one month followup when he said I was put on the wrong machine according to my titration study. Maybe some of you can make sense of this;
So, I started using Respironics System One Bipap AutoSV Advanced 960P on July 29. It's not going very well. I've tried different masks, Wisp, Zest, Comfort Gel nasal(this was used for my titration study) and just recently, Mirage Quattro FF. The Mirage was a sample and It's to big. Zest and the comfort gel I think are to big also. At least according to my measurements. The Wisp fits but my mouth drops open while sleeping. I was given the Ruby adjustable chin strap but it's already stretched out. I can't get another mask for about a month, I have Medicare. I'm going to try to get another fitting with my DME. They've been pretty good to me. I have small facial features.

I've been looking over my data, thanks to you folks, and it looks like the machine is doing a good job until I really get into a deep sleep. Then it seems to be unable to cope with my irregular breathing. I'd appreciate any of your thoughts. Let me know if you'd like more info or screen shots.

Snowleopard28

Here's a couple pic's from SleepyHead:
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Here's a couple pics from Encore:
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Could you also post the nightly detailed report from Encore?
In SleepyHead the main graphs of interest on the right side are the Events, Flow rate, pressure and leak. The others really aren't needed.

Are these the ones you wanted? Just some more history. The reason why the sessions are like they are, is because for the past 15+ years I haven't been able to stay asleep for any longer than 3 hours at a time. 90 minutes is my average. That's how long I've been treated for chronic pain and all my doctors told me it was the pain that was waking me, even when I told them different. So I have to sleep whenever I get a chance.

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Yes, those are the ones thank you.
I was especially interested in the Encore leak graph to make sure it wasn't flagging large leaks and it isn't.

Those are some ugly reports but you already knew that.

When is your scheduled follow up with the doctor that is managing this machine's results?

Roughly 3 weeks on this ASV machine isn't very long for ASV adjustment. Has there been any improvement at all (even slight) since you first started the last of July?

Was your diagnosis solely central sleep apnea or were there some obstructives in there too?

My next follow up with sleep doc is Sept. 29th. I think I've had "some" relief but I'm still waking up the same way I did before I started the treatment. I was told my sleep study showed a AHI of 27 centrals/ hour. He didn't say anything about obstructive. Maybe your right, that it's just to soon for the machine to get a handle on me. LOL
Question, If I'm using my Wisp nasal mask and my mouth drops open, not necessarily mouth breathing but air coming out making the machine have to up the pressure to compassionate, would that show up as a leak? The other thing I've notice that concerns me is the patient trigger breaths percentage is around 50% or less on average. I know this machine is designed for this but even when it's this bad? My last session wasn't long but is was not bad. But it seems that my AHI's are low if I only sleep for about an hour. It's when I start pushing the 3 hour mark, that's when it crashes. I don't what to do??? Give it more time or go see my doc sooner?
I was able to get a copy, bad, of 1 page of my titration study.

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See your doctor sooner than later.

Yes, if your mouth drops open and air blows out your open mouth then the machine will register a big leak and while technically it isn't flagging it as a large leak you are pushing real close.
Big leaks seem to especially how ASV machines respond but I don't know if your difficulties are tied to leaks or not.

The low patient triggered breaths concern me...so yes...they are bad but that's why you have this high dollar fancy machine so that it can help you out. It's supposed to kick in when you don't initiate the breaths yourself.

Your reports are just screaming poor sleep quality in every front but I don't know what to tell you to do except see your doctor.
If you had reported obstructive sleep apnea also then maybe what we are seeing in the OA and hyponea events are obstructive because EPAP isn't quite sufficient. But more EPAP could potentially make the centrals worse...so I don't advise much dialawingin when I see reports this ugly.

With the pain and the meds and general crappy sleep and central sleep apnea there's a lot to sort through here. I can try to help you understand what you are seeing here but I lack the expertise to offer any ideas on how to go about making things better.
I did send a note to someone who has more experience and understands this a lot more than I do to see what he has to say but he hasn't been on the forum in a while so I don't know when/if he will be able to respond.

Your doctor needs to be at least aware of these reports and what they show. He will be used to Encore software.

Oh...I can't read the image of the titration report...not that I would understand much of it if I could read it but someone else might be able to if it is a little clearer.

Thanks Pugsy,

I think I'll try to get in to my sleep doc sooner. One thing I'm afraid of is if you just look at the numbers and not any graphs, it looks like I'm doing good. No where on any of the software is the number of sleep hours. Unless I missed something? I know in SleepyHead there is the sessions and you can go to the graphs to see how long I stay asleep for but I know how easy is to get focused on just the AHI's and pressure numbers. Even though I have some good AHI sessions, I have yet to reach any kind of restorative sleep. Which is what I"M looking forward too. Since I've been using this machine, my longest session was 3 hours and 33 minutes. How can anyone feel rested if that's as long as they can sleep for at one time???

Encore does do an hours used component on the last page in the reports. I think there is a way to get just a total hours used by limiting the dates of the report. Did you see that last page?

SleepyHead does report the total hours the machine was used. It's right under the AHI event category bar graph on the left and above the statistics.

One thing I forgot to mention or ask. You are using Pro is that correct? Have you changed the time zone in Pro from GMT time (that's the default) to whatever your time zone is? I don't know if your reports are fragmented because of the time zone thing or it's just your poor sleep. If you didn't do this and can't figure out how let me know and I will find my old instructions on how to fix the time thing.

If it is pain that is waking you up then we can't expect the machine to fix that can we? But if the wake ups are related to the central apneas then we would hope the machine could help fix those issues.

I think checking in with the doctor sooner than later is a wise choice. That's what I would be doing if these were my reports.

I haven't played with the Pro to much yet. You were right about it being a pain. I found the hours use. I quess what I was trying to say was, there's no summary of the fragmented sleep hours. It's not a big deal but my sleep is just what you see. I sleep for a short time, then I'm awake for a while, then I try again. As for the pain, the meds I am on now, do a pretty good job of controlling my pain. When I wake up, even with the machine, I'm not gasping but I have the feeling I have to get the mask off now! I just bought a CMS50F, the white faced one. I'm still having problems syncing to SleepyHead, even following the instructions I've found on this forum. My sats are not that bad when using the machine as compared to not. But I haven't gotten into a deep sleep yet.

How should I tell my doctor how I know about all this information? Remember, we patients aren't supposed be able to access anything.

Just tell your doctor that with the internet like it is...nothing is secret anymore.
SleepyHead is freeware.
Respironics even sells a version of Encore to patients....it's called Encore Viewer. Just tell him you got Encore..he doesn't have to know you didn't. It's not so much that we aren't supposed to know this stuff as we aren't supposed to know how to change the settings. With Encore Pro you can change the settings in the machine...with Viewer you can't so they think it's okay for patients to look at the data...we just aren't supposed to change anything. Which is kinda silly because it's real easy to get into the clinical menu anyway. Using the software takes a lot more effort.
https://www.cpap.com/productpage/encore ... onics.html

Thanks a lot Pugsy, I'll try to get in to see my doc next week. Who knows, maybe this "Cadillac", as my sleep doctor called it, will figure me out this weekend. [WHITE SMILING FACE]

Pugsy wrote:One thing I forgot to mention or ask. You are using Pro is that correct? Have you changed the time zone in Pro from GMT time (that's the default) to whatever your time zone is? I don't know if your reports are fragmented because of the time zone thing or it's just your poor sleep. If you didn't do this and can't figure out how let me know and I will find my old instructions on how to fix the time thing.

To change the time settings: Company Settings Tab > double click your company> Offices Tab > click Edit Button > use drop down menu box to change from GMT to your time zone and check DST (daylight savings time) if used in your area.

The program will then recalculate all your data which it is said can take up to 24 hours to complete.

Pugsy wrote: If it is pain that is waking you up then we can't expect the machine to fix that can we? But if the wake ups are related to the central apneas then we would hope the machine could help fix those issues.

Pugsy, this is, I think the only time I've ever had reason to disagree with you.

I had the poste'rs issues -- being awakened every 2-3 hours with severe pain in my hips. I'd take an anti-inflammatory, wait for it to kick in, and go back to sleep. And then a couple hours later, the pain would wake me again.

My now-former GP ignored this. He also ignored my symptoms of uterine cancer, which is why he's now my former GP.

After the cancer surgery, my gut pain was NOT going away -- I was still needing pain meds 4 months after the surgery. So I was sent to a pain specialist.

While I was there, in addition to telling her about the current issue, I told her about the hip pain. She nodded, and said she was sending me for a sleep study, because, she said, nine times out of ten, when there is no apprent cause for chronic pain, the source will be found in sleep disruption.

I had the sleep test. My oxygen levels were somewhere underneath the basement around the time I woke up in pain.

When I got my ASV, within ten days of settling in with the machine, I was sleeping through the night without hip pain.

In 2012, when I was without power and had no Bipap for most of a week because of Hurricane Isaac, I was in so much pain I could not see straight. When we got power back, I slept for most of the next 48 hours, emerging to go to the bathroom and eat something.

So yes, I can well believe that the OP may find, once s/he gets things dialed in, that the pain is significantly reduced, if not gone.

Kiralynx wrote: Pugsy, this is, I think the only time I've ever had reason to disagree with you.

I forgot about your special situation.
This person is on such strong pain medication that it is causing central sleep apnea. We don't know if without the meds if he would still have CSA. I don't know the full history as to why such strong pain meds but I assume it is something very serious.

Nothing would make me happier to be proven wrong in this situation but not everyone has their pain go away with optimal therapy.
I sure didn't...in fact things have gotten worse in the pain department for me.
So you got relief and I didn't and things have got worse. The vertebra in my neck has slipped more and pressing further onto the spinal cord. The best cpap therapy in the world isn't going to be able to move it back. Already had one surgery some years ago for 2 of them but we couldn't fix all of them at that time.

Kiralynx wrote:
When I got my ASV, within ten days of settling in with the machine, I was sleeping through the night without hip pain.

Wow, that's great! I wish I could have similar results.

Pugsy wrote
Nothing would make me happier to be proven wrong in this situation but not everyone has their pain go away with optimal therapy.
I sure didn't...in fact things have gotten worse in the pain department for me.

I'm sorry your pain is so bad.

As for the history of my pain, It's quite a long story but to summarize, I've had surgery on both shoulders several times, right ankle and recently, thoracotomy on my the left chest with a wedge of upper lobe of my lung taken out. Not cancerous!! This last surgery, I think, is also contributing to the machine having such high IPAP pressures. I could be wrong. I also have keloids, which means I over scar, inside and outside of my body. Since my ankle surgery I've had to use forearm crutches. There is something that's concerning me, if this treatment doesn't work, the doctors will want me to stop taking my pain meds(Methadone, Nucynta and Norflex). Oh, did I mention I have asthma too?

Can some explain the leak graph to me? I don't know which line I should be watching?

Here's a screen shot from my resent sleep attempts.
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