My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
MisterClean
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My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by MisterClean » Fri Jul 31, 2015 9:53 am

Hi,

I’m “new” in that I just created a user ID yesterday, but I’ve been lurking for some time. I’m a 45-year-old male with complex apnea and have been struggling with BiPAP therapy since the summer of 2013. Specifically, I have a BiPAP ASV Advanced and I’ve gotten just about no support from my DME. Frankly, I’m not sure even the two docs I’ve seen really understand it—though the first doc was so uncommunicative that it’s really impossible to judge. I did get the DME to admit that they normally don’t “do anything” when they get a patient on the ASV Advanced—they just give them a vanilla machine. Now, maybe that’s usually appropriate since the unit is so automated, but boy I wish someone would have told me about how the thing works.

Specifically, I’ve never really been able to fall asleep with it—well, maybe a couple of times. But usually I have what I assume is a period of central apnea right as I’m falling asleep which causes the machine to breathe for me—pretty unnerving as one is trying to fall off to sleep. When I’ve described this to the technicians at my DME, they have decided that there must be something wrong with my machine, so now I’m on my 3rd machine. (First machine would not go into ramp mode so maybe it really was defective.) Being in IT professionally, however, I find it hard to believe that this is truly a problem with the machine. I suspect that I’m simply having an “event” as I fall off, the machine is operating in servo mode and trying to compensate for my lack of breathing. It’s just so frustrating. I wish there was some way to suppress or greatly reduce this feature until I was asleep.

Is there anything I can do to improve my chances of falling to sleep? I had originally thought I could tweak “Rate” to some lower number (4 or 6) to stop the madness but 1) I’d be afraid that this would allow my central events to go on too long over the course of a night and 2) It seems that the ASV algorithm takes precedence over the “Rate” setting—it has its own intervention threshold that triggers it to breathe for you when your breathing deviates too much from its 4-minute rolling calculation, or at least this is how it seems to work. (I’ve also wondered since I’m on version 2.00 if the algorithm might have been improved in later releases but it seems that updating the machine, even if possible, is a “big deal.” Is this correct?)

Thanks for any advice anyone is able to provide. I will say that so far this forum has provided far more information than all of the DME staff and doctors combined. And for those of you that are wondering how I’ve not acclimated after two years, let’s just say that after I became frustrated I mostly let the machine sit on a shelf. However, I’m having what may be the onset of some cardiac troubles (have seen GP, had tests, have upcoming appt. with cardiologist) so I’m now much more motivated than ever to address the apnea. Plus I’m just plain tired of being tired.

Thanks again,

Greg

Here are my current settings, tweaked slightly based on my research both here and elsewhere:
EPAPmin = 4
EPAPmax= 15
PSmin = 0
PSmax = 20
Max Press = 25
Rate = 8
I-Time = 1.5
BiFlex = 3
Ramp = 45
Ramp Press = 5.0
Rise Time = ? (know this is a setting but I’m not sure what it does or if I was able to set it)

PoolQ
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by PoolQ » Fri Jul 31, 2015 10:29 am

When the ASV users show up I have no doubt that you will get some answers.
Sleeping MUCH better now

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Pugsy
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by Pugsy » Fri Jul 31, 2015 10:33 am

What model number is your machine? Is it 950 or 960 or one of the older Legacy series machines? How long have you been trying to make ASV therapy work for you?
Do you have the software so you can see the data on the reports?
How did you come up with PS minimum of 0? Have you tried something higher...if so what?

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MisterClean
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by MisterClean » Fri Jul 31, 2015 10:41 am

Pugsy,

It's a 960. Since my first efforts in 2013, and again in the fall of 2014 after I got my first replacement machine, I've only been trying since I got my 2nd replacement machine--maybe 2 weeks? Maybe I just need to be more patient and stick with it?

I do not have software, but I've seen references to it here so I'm thinking it's an investment I'll need to make.

The PSmin of 0 was from a PR titration guide. It was at 4 before I tweaked it, however. Why? Do you think a higher number would help?

Thanks,

Greg

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Pugsy
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by Pugsy » Fri Jul 31, 2015 10:49 am

With PS of 0 that pretty much makes the machine work more like an apap works. Usually 4 or 5 PS minimum is a good starting point unless someone has other lung health issues.

How about we look at the software detailed reports and see what is going on and what the machine is actually trying to do when those pressure changes seem to disturb your sleep...I am assuming it is the machine's response to a central that is causing you to wake up and not because the centrals are happening and it's the centrals waking you up.

SleepyHead will work with the 960 but sometimes it acts up...I think it might be related to the settings but haven't figured out exactly what the deal is.
SleepyHead has both Mac and Windows versions.
https://sleep.tnet.com/resources/sleepyhead

Encore will also work and is Respironics software...Encore Viewer is a paid for product and I don't think that it works with the 960 but I have something that does. I will send you a private message in a bit with more information on that software.

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JDS74
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by JDS74 » Fri Jul 31, 2015 5:46 pm

MisterClean wrote:Hi,

I’m “new” in that I just created a user ID yesterday, but I’ve been lurking for some time .....Thanks again,

Greg

Here are my current settings, tweaked slightly based on my research both here and elsewhere:
EPAPmin = 4
EPAPmax= 15
PSmin = 0
PSmax = 20
Max Press = 25
Rate = 8
I-Time = 1.5
BiFlex = 3
Ramp = 45
Ramp Press = 5.0
Rise Time = ? (know this is a setting but I’m not sure what it does or if I was able to set it)
Hi Greg:

Looking at your settings, I see some conflicts that need to be resolved.
Ramp Pressure exceeds PS Min and Ramp Time of 45 means that for a very long time, you are going to operating at a quite low pressure. With a starting pressure or either 4 or 5 cmH2O, there is just no need for Ramp at all. I would suggest turning Ramp to Off.

With PS Min set to 0 cmH2O, the initial EPAP and IPAP will both be very low and not provide much support for the occasional obstructive events. Also, a starting pressure of 4 cmH2O isn't very much and, for some people, contributes to a feeling of not enough air when they breathe. Perhaps, as Pugsy suggested, starting out with PS Min at a value like 4 cmH2O would provide a little better starting point. That would give you a starting IPAP of 8 and starting EPAP of 4.

It's hard to tell if setting the Backup Rate to a value less than 8 will help. The 960 reacts so fast to perceived central events that a lower rate might help. Setting at 8 means that the machine expects you to take a breath every 7.5 seconds before it gets excited and starts to ventilate. A setting of 6 corresponds to a breath every 10 seconds which gives the machine a little more time and you a little more time. Even setting it to the minimum of 4 BPM won't be much of a problem although I would suggest either 7 or 6 BPM before trying lower rates. Most ASV folks get along nicely with this parameter set to Auto but sometimes their natural breathing rate while sleeping or while transitioning to sleep will trigger a ventilator puff or two. I have mine set to Auto but the occasional machine initiated breaths while I am going to sleep don't bother me as much as they seem to bother you. Because of that, it needs to be addressed so you can get to sleep and let the machine take over from there.

When you get the appropriate software installed, you can take a look at your breathing rate and see what it looks like.

The last thing to do is get a copy of all of your sleep study reports. There is lots of really important information buried in them that will help in getting things resolved.

BTW: it is important to get your doctor on board while going through this particular thicket. If they know what you are doing and the underlying problems you are trying to solve so that you can be compliant and get good therapy, they can be supportive and perhaps add additional suggestions as to what to try.

Because of some symptoms that I have, my sleep doctor prescribed a very low dose of a med called Trazodone that helps with going to sleep. It's an older med that doesn't have the side effects or the addictive effects of more modern meds so is much safer to try in this situation. The normal minimum dose is 50 mg but mine is 12.5 mg because of drug interactions with other meds I have to take. My docs are very leery of traditional sleep medications as am I because of the central apnea component. Not very often but occasionally I have seen in my data periods of 2 to 3 hours in ventilator mode without me taking even one breath on my own. The machine works but the graphs are a little scary in the morning sometimes. Before getting my ASV machine, I recorded several instances of central apneas lasting more than two minutes before I woke up and tried to breathe. I wouldn't ever consider going back to my old Auto BiPap machine.

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Sleeprider
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by Sleeprider » Fri Jul 31, 2015 6:31 pm

For God's sake man, turn off the Ramp! (Dr. McKoy to Cap'n Kirk voice)

You don't need ramp, especially with a minimum pressure of 4.0, and your sleep onset centrals are not treated when it is in effect. Turn it off. Next, set your PS min to 4.0. By leaving your pressure support at zero you get no benefit from the bilevel, and the auto algorithm won't increase it consistently enough to get you comfortable. Finally, you must follow your data to learn what minimum EPAP pressure will extinguish obstructive apnea. The EPAP must be above that pressure.

Once that gets sorted out, we can begin to see how this thing operates in ASV mode.

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MisterClean
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by MisterClean » Sat Aug 01, 2015 6:27 am

Working backwards:

Sleeprider -- Thanks. Yes, PSmin=4 made a big difference in "feel". However, I'm still having the machine try to force a breath while I'm very much awake. I can't wait to analyze the data and and post it here so those with experience can tell me what they see. Also, and strangely, I could find no option for Ramp anymore so I'm thinking some other setting has overridden my ability to set and use the Ramp. Significantly I think, when I pressed the Ramp button nothing seemed to happen. BTW, I heard your advice in Dr. McKoy's voice--good choice. (I miss Dr. McKoy.)

JDS74 -- Thanks much for the detailed explanation and advice. I think I understand your meaning and why I need to make the changes. As I told Sleeprider above, I set PSmin to 4. I found this to be a bit "invigorating" -- not uncomfortable but maybe a bit "much". But then the machine continues to force a breath seemingly as soon as I stop concentrating on my breathing pattern, i.e. as soon as I start to drop off to sleep. Very frustrating. I did set the Rate to 6 but I don't think this really does much as the 4-minute calculated pattern seemed to take precedence. Certainly if I was having these forced breaths with Rate set to Auto then setting it to 10, then 8 and now 6 I would expect to see the problem greatly improve, if not vanish. Not the case at all. Related to my sleep doc, I have made an appointment with her. Week after next. Also, I have Trazodone, can take 25mg at night. I normally don't use it, but maybe I should give it a try?

Pugsy -- As I said in my PM from yesterday afternoon, thanks so much. I greatly appreciate the advice and assistance!

Greg

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Pugsy
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by Pugsy » Sat Aug 01, 2015 6:57 am

MisterClean wrote: the machine continues to force a breath seemingly as soon as I stop concentrating on my breathing pattern, i.e. as soon as I start to drop off to sleep.
Probably having sleep onset centrals and the machine is just doing it's job. Unfortunately in doing its job results in a big pressure boost to get you to breathe again and that wakes you up again. This part of it you may just have to be willing to give it time (assuming we don't see any other issues on the software reports once you have them). Eventually the brain learns to trust the machine and won't be waking you up as often to nudge you in the ribs to tell you "hey dude, did you know that crazy machine is blowing air at you like there is no tomorrow?"
Some people are extremely sensitive to that big burst of air...some aren't.

If your doctor is okay with the trazadone to maybe help get past the initial adjustments so the brain is less vigilant....I would give it a try...just for short term use till your brain and body gets used to the therapy and comes to accept it as the new normal and not something abnormal. The body/brain will adjust if you give it enough time.
I liken it to where we sleep in noisy environments...When I went to school I was in the nurses dorm over the ER of a large regional hospital. Sirens all night long sometimes...eventually I got to the point I never heard them and they didn't wake me up but for a few weeks I didn't get much sleep.

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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by Sleeprider » Sat Aug 01, 2015 7:56 am

MisterClean wrote:Working backwards:

Sleeprider -- Thanks. Yes, PSmin=4 made a big difference in "feel". However, I'm still having the machine try to force a breath while I'm very much awake. I can't wait to analyze the data and and post it here so those with experience can tell me what they see. Also, and strangely, I could find no option for Ramp anymore so I'm thinking some other setting has overridden my ability to set and use the Ramp. Significantly I think, when I pressed the Ramp button nothing seemed to happen. BTW, I heard your advice in Dr. McKoy's voice--good choice. (I miss Dr. McKoy.)

JDS74 -- Thanks much for the detailed explanation and advice. I think I understand your meaning and why I need to make the changes. As I told Sleeprider above, I set PSmin to 4. I found this to be a bit "invigorating" -- not uncomfortable but maybe a bit "much". But then the machine continues to force a breath seemingly as soon as I stop concentrating on my breathing pattern, i.e. as soon as I start to drop off to sleep. Very frustrating. I did set the Rate to 6 but I don't think this really does much as the 4-minute calculated pattern seemed to take precedence. Certainly if I was having these forced breaths with Rate set to Auto then setting it to 10, then 8 and now 6 I would expect to see the problem greatly improve, if not vanish. Not the case at all. Related to my sleep doc, I have made an appointment with her. Week after next. Also, I have Trazodone, can take 25mg at night. I normally don't use it, but maybe I should give it a try?

Pugsy -- As I said in my PM from yesterday afternoon, thanks so much. I greatly appreciate the advice and assistance!

Greg
Greg, great feedback. May I suggest you just stick with this for a week? It will take that long to get used to the pressure support, but the benefits will probably outweigh the disruption you will experience until you get used to the stimulation. You have a difficult problem to solve with sleep onset CA. I think once you adapt, it will become natural and expected. Right now, it's like being surprised when that pressure pulse hits. There are some things we can do later if necessary to make it easier.

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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by Sleeprider » Sat Aug 01, 2015 8:05 am

Just wanted to quickly add, the reason you don't feel any affect from turning on ramp is that your minimum pressure is the same as ramp. I think the BiPAP pressure support is still in effect during ramp, so no change would be expected. Did you sleep?

You can try lower initial minimum PS settings until you get comfortable with it, but don't go back to zero. It really will be something you look forward to once you get past the idea the machine is forcing breaths. If you ever feel that, just exhale more forcefully, and the machine will comply.

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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by JohnBFisher » Sat Aug 01, 2015 10:27 am

MisterClean, welcome to the wonderful world of central sleep apnea. From your descriptions it sounds as if you suffer the some of the same issues that I do. In particular, as you fall asleep you fail to breathe regularly. That causes you to feel as if the machine is forcing you to breathe - even if you are not fully asleep yet. And it's doing that because you are NOT breathing regularly. It wants you to do so.

So, what's someone to do .. First of all, it takes TIME TO ADJUST to ASV therapy. You notice the machine as you breathe. Before long (a few months) you won't even notice.

My suggestion to help with adjusting to the ASV therapy is to wear the machine and listen to music or an audiobook or watch TV or .. Just spend time with the machine and mask on. The more accustomed you are with the therapy, the less this will be an issue for you.

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MisterClean
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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by MisterClean » Sun Aug 02, 2015 8:41 pm

John -- Thank you. I don't doubt that your advice about "sticking too it" (echoed by Sleeprider and Pugsy) is correct. I pushed myself last night and I will have to say that I kept the mask on longer--and got closer to falling to sleep--than in the past. More importantly, when the machine started to try to breathe for me, rather than rip off the mask in frustration, I forced myself to remain calm and continue to try to relax, be still. Sure enough, each time it happened it became less disquieting/frustrating, though ultimately I had to remove the mask to fall asleep as I got a late start on bedtime and had to be up early today. Still, I plan to continue my efforts. Also, I like your idea about hooking up and doing other things, such as listening to an audiobook. I'll try that.

Sleeprider -- My continuing thanks. Ultimately, I set PSmin=3.0. Seemed to be a good compromise. I'll work up over time I'm sure. And, yes, it IS like being surprised when the pulse hits--exactly. It's quite unnerving, actually. But last night it bothered me the least that it ever has bothered me, which is a good thing. Maybe I'll actually be able to fall asleep soon! (Then I'll just need to remain asleep, but we can fall off that bridge later.)

Pugsy -- Thanks much. I wholeheartedly agree--I need to stick it out. I've read and been told many times that people can get used to almost anything given enough time. I just need to be invested in making it happen. Finding this forum and receiving advice from the helpful members has gone a long way to helping me realize I'm not alone, and therefore helped with that feeling of discouragement. Frankly regarding the medical professionals I have dealt with so far it seems like, well, none of them have the job of actually helping me to USE the machine. The figured out what was wrong, figured out what I needed and then sent me home with a scary diagnosis, a $6,000 machine--and best wishes for the future...

BTW, especially Pugsy, I haven't been able to load the software yet, so no data to post. Busy weekend and my limited computer time was spent upgrading to Win10. I'm going to attempt to do it tomorrow (Mon.) I'll post afterward if it actually gets done tomorrow.

Greg

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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by jdr999 » Tue Aug 04, 2015 12:06 am

My CI ranged from 4-6 on most nights which isn't great but not exactly CSA territory.

My biggest problem is sleep onset centrals. This is a common problem - many of us have it..

For me though, falling asleep on my aPAP was like a roller coaster ride. I'd awaken 6+ times while falling asleep with a jolt and would feel "off". When I'd glance at my wrist oximeter it would usually be in the low 80's. After some deep breaths I'd be back to normal in about 10 seconds or so.. Falling asleep finally became such a chore I decided to take the plunge to an Adapt ASV.

My machine does a great job syncing to my breathing. I do notice it kicking in on its own and I think to myself "Wow. I had no idea I wasn't breathing. That's awesome -- it's got my back.."

If that's what's happening, relax and go with it. Take comfort in the fact that you know you're breathing. Let it help -- that's its job.

Don't think "Crap, I'm not breathing - this is bad!!" -- smile and think of it as another CA that's not going to happen.

Make sense?

(Although technically it does happen, but the machine addresses it quickly enough..)

Best,
Joe

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Re: My BiPAP ASV Adv. Does NOT Want me to Fall Asleep!

Post by JohnBFisher » Wed Aug 05, 2015 11:18 am

jdr999 wrote:... My machine does a great job syncing to my breathing. I do notice it kicking in on its own and I think to myself "Wow. I had no idea I wasn't breathing. That's awesome -- it's got my back.." ...
Perfectly described!! And you're right. I went from REALLY DREADING falling asleep to longing for it. But that change did not occur until I accepted that my machine has my back. I can fall asleep and know it'll kick in when I need it.

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