Ventilator - AVAPS Question -- Anybody????

I know I've asked questions about AVAPS before and I AM posing it to my Respiratory Therapists, but wanted to see if ANYBODY here might have an idea....

Anybody following my saga knows that I am half crazed at this point from awakenings and overall disrupted sleep.

The Trilogy -- in Bipap S/T mode with AVAPS -- IPAP Min 14, Max 23, EPAP 9, RR 7, Tidal Volume 400.

My afternoon naps are a good time for me to WATCH what the ventilator is doing (at night, I don't bother checking much when I wake up -- just turn over and try to go back to sleep) but during the day, I keep the screen up so I can really SEE what the heck this thing is doing.

Typically, my IPAP starts out high when I first get hooked up, but backs down to my min (13.9 - 14.1 usually) when I'm laying there. If I take a nice, deep breath, I can get the IPAP up to 14.5 - 14.8 -- depends.

When I'm about to doze off, frequently I am jerked back to full wakefullness and look -- the ventilator is pushing higher pressure (17-19). Once I am fully awake, the pressure backs down in one, two or three tenths increments with each inhale/exhale cycle until it gets back down to my minimum. Same thing happens if I DO fall asleep, but wake up to high pressure.

Yesterday's nap, I had dozed off and woke to high pressure. Fine...but it wouldn't back down this time, at least not like it typically does. I was wide awake, laying there like I usually do, but it kept the pressure up in the 16-18 range for a long time. It did it to me a couple times last night too (I checked).

Here's my question...

What is this thing responding to? Low Tidal Volume? Low Respiratory Rate? My NOT breathing at all? I'd really like to know what the problem is on this because it is driving me more insane than I was before.

Anybody???

Hi Madalot,

My first response is the old saying: "A watched pot never boils"

I think it's you that is driving yourself crazy, not the machine. What you're doing by real-time watching is a major distraction to sleep and my first advice is to say, "Cut it out" and look at the data later like everybody else does. It's really poor sleep hygeine.

Sleep is often especially disordered right as you're falling asleep. So perhaps the machine is responding to one of those hypnogogic centrals and then it wakes you up.

Is there any way to take it off automatic and just run it as a BiPap with a timed back-up? It seems that might be less of a distraction to you.

So those are my rookie thoughts and seriously, no offence meant.

Best wishes,
Jamis

jamiswolf wrote:My first response is the old saying: "A watched pot never boils"

I think it's you that is driving yourself crazy, not the machine. What you're doing by real-time watching is a major distraction to sleep and my first advice is to say, "Cut it out" and look at the data later like everybody else does. It's really poor sleep hygeine.

Sleep is often especially disordered right as you're falling asleep. So perhaps the machine is responding to one of those hypnogogic centrals and then it wakes you up.

Is there any way to take it off automatic and just run it as a BiPap with a timed back-up? It seems that might be less of a distraction to you.

So those are my rookie thoughts and seriously, no offence meant.

I can understand why it might "appear" this way to some. In the beginning (Feb 2010) I DID watch the screen too much and got a bit obsessive about it. After a few months, I STOPPED looking, turning the screen saver ON so I could not easily see what was happening when I woke up. Screen saver is still ON every night.

When "something" wakes you up, 4, 6 10 times a night and you realize that it IS the machine that's doing it, you tend to want to figure out what's causing it.

My afternoon naps, I DO leave the screen up so I can see. But it's because the damned machine wakes me up so much, not that I am overly obsessed.

We tried bipap s/t and I had breathing difficulties too often, so I switched back to AVAPS.

I appreciate the thought anyway -- and no offense was taken by it. I understand why it might seem that way to someone who really doesn't know me that well.

Hi Madalot,
I figured the situation was more complex then it initially appeared to me.

I'm not familiar with that machine, but can you adjust the maximum pressure that the machine uses during central events? It seems like it's probably that pressure that's waking you. Of course you wouldn't want to lower it so low that it doesn't serve it's purpose. But a slight downward tweaking may be indicated.

That's my only other thought. Those machines are complicated and you aren't the only one to have difficulties interfacing with them.

Best wishes,
Jamis

Madalot wrote:I
Here's my question...

What is this thing responding to? Low Tidal Volume? Low Respiratory Rate? My NOT breathing at all? I'd really like to know what the problem is on this because it is driving me more insane than I was before.

Anybody???

So I take it the only information available when the screen is on is indeed the IPAP/EPAP pressures. And that then leads us back to examining the rest of the data after a download. Which, because you are using a Trilogy Vent, is not as simple as telling someone with a S9 AutoSet or PR System One Auto to look at the data on the computer.

So: Do you still have to beg the DME to do downloads for you? Or has someone in your collection of docs and RTs who are trying to help figure out how to make you more comfortable made it possible for you to get at your data without the need to have the DME do the download for you?

I think it's also time to ask the RTs to learn more about the AVAPS algorithm on this machine---in particular both what kind of events cause it to increase pressure and exactly how long or how often those events have to occur to trigger the increase. And they also need to learn how the algorithm determines that it is ok to reduce the pressure. And then they need to explain it to you. Because right now you're caught between a rock and a hard place and the using a machine that's well off the beaten path. Hence, the techs may not know the ins and outs of the algorithm much better than you do right now.

Best of luck with you continuing struggles to find a good night's sleep.

jamiswolf wrote:I figured the situation was more complex then it initially appeared to me.

I'm not familiar with that machine, but can you adjust the maximum pressure that the machine uses during central events? It seems like it's probably that pressure that's waking you. Of course you wouldn't want to lower it so low that it doesn't serve it's purpose. But a slight downward tweaking may be indicated.

That's my only other thought. Those machines are complicated and you aren't the only one to have difficulties interfacing with them.

Yes, my situation is rather complex. From what I have been told, using a VENTILATOR, NONINVASIVELY (mask rather than trach) is unusual. Insurance wise it has been a nightmare.

Neuromuscular disease, initially diagnosed as sleep apnea, but changed after 30 days to diaphragm muscle weakness, now being theorized that I actually have both -- sleep apnea & diaphragm muscle weakness. Failed both cpap & bipap, thus the ventilator. This machine is NOT sleep apnea oriented and the software doesn't track a lot of sleep apnea information. It does track apneas, but it does not differentiate between central & obstructive and whatever criteria it uses to indicate an "apnea" is strange. My reports show anywhere from 19-80 apneas a night.

Many people are thinking that a Resmed machine *might* increase pressure more smoothly, maybe NOT disturbing my sleep as much. While the Resmed machines don't have AVAPS, we are going to try one (naps first) just to see IF the pressure transitions are smoother than what I am currently doing.

I have received a preliminary response from one of my RT's saying that most likely, the pressure increases are a result of low tidal volume, thus the machine having to increase the pressure to maintain my set tidal volume (400, which isn't that high to start with -- acceptable, but not overly high).

I had my maximum IPAP at 17 for a while but was waking up to the machine pushing beyond that (it will happen) and it was obvious that it was still going to wake me up, but wanted to go even higher. My maximum is now set to 23 and I seem to be hitting 20 several times a night.

I am still trying to find an answer (Resmed trial is a good thing to do) but it is very likely that this cannot be solved. In order to keep me properly ventilated, the machine may have to get to certain pressures, but I cannot sleep through the higher levels.

Breathing - Sleeping? If you aren't breathing, how good your sleep is doesn't matter. You'd be dead. I want to be positive that there's nothing else we can fix/change to make it better before I give up and give in. I keep getting to the "acceptance" stage, but something else comes up to consider or try.

robysue wrote:So I take it the only information available when the screen is on is indeed the IPAP/EPAP pressures. And that then leads us back to examining the rest of the data after a download. Which, because you are using a Trilogy Vent, is not as simple as telling someone with a S9 AutoSet or PR System One Auto to look at the data on the computer.

So: Do you still have to beg the DME to do downloads for you? Or has someone in your collection of docs and RTs who are trying to help figure out how to make you more comfortable made it possible for you to get at your data without the need to have the DME do the download for you?

I think it's also time to ask the RTs to learn more about the AVAPS algorithm on this machine---in particular both what kind of events cause it to increase pressure and exactly how long or how often those events have to occur to trigger the increase. And they also need to learn how the algorithm determines that it is ok to reduce the pressure. And then they need to explain it to you. Because right now you're caught between a rock and a hard place and the using a machine that's well off the beaten path. Hence, the techs may not know the ins and outs of the algorithm much better than you do right now.

I can get downloads on demand, whenever I want. Wasn't easy, but I was pretty insistent and won that. But you're right -- the information you get from a download is NOT the same as you get with the cpaps & bipaps. It's just not sleep apnea oriented.

But maybe I should get yesterday's download and see if anything looks unusual. That's a good place to start I guess.

My RT already responded and said he believed the Trilogy was responding to low tidal volume, but said he was going to play with one and test it out. I take that to mean playing with it enough to learn more about it to help answer my questions.

If/when I crash this afternoon, I am toying with turning on the "Low Tidal Volume" alarm, setting it as low as possible (40 I think) and see IF it goes off and if it does, what the pressure is when the alarm sounds. Will disturb my nap, but the high pressure does that anyway so it doesn't matter.

Edited to add: The screen displays everything when I wake up -- IPAP/EPAP, I/E Ratio, tidal volume, leak rate, minute ventilation, and a few other things I don't remember. Maybe next time I wake up, I should focus more on tidal volume and watch that -- takes me a few seconds to clear the cobwebs though...

Madalot,
OK, now I remember your other thread. Sorry I didn't put 2 and 2 together. Indeed a difficult situation. My Dad had myesthenia gravis and I contiuously hoped and prayed that it never effected his respiratory muscles. Luckily it didn't and he lived to be 87 (hope I do that well).

A more mainstream machine might help. I'm a respironics user and I like that they have LOTS of adjustments. I'm a knob twiddler by nature.

I certainly agree that breathing is more important then sleeping, but it would be nice if the quality of your sleep could be improved. 20cm isn't that high a pressure. Some of the asv users have to deal with even higher, but if it wakes you up, then I guess it's a problem.

I hope the Resmed trial goes well and I wish I had any useful ideas.
Take care,
Jamis

Maddie,

I think you are just going to have to play with the settings. I usually pull a report anytime I have a really bad night so I can see what is going on. I think I would start with pulling the data the next day and documenting in the notes or comments section what happened the night before. Maybe there is a pattern.

I know with the change of seasons I am having a hard time sleeping. I had to resort to taking meds last night as this has been going on now for about 10 days.

I would stop screen watching and start looking at the readouts and keeping a journal of sorts.

msradar65 wrote:I would stop screen watching and start looking at the readouts and keeping a journal of sorts.

LOL -- I only "screen watch" during my naps (rarely bother looking at night) and only when "something" wakes me up. Unfortunately, the screen provides better information (real time only) than the downloads do.

Interestingly enough -- I just got up from a nap. I decided to enable a couple of alarms, see if I could determine what is making the pressure go so high by way of alarm (I will turn them all off at night because I am NOT going to mess with this during the night).

I started dozing off fairly quickly (within about 10 minutes). However, I woke up every 10-15 minutes either on my own (to high pressure) OR to an alarm (also with high pressure). The alarm was...

APNEA.

Interesting. Every awakening, the tidal volume looked fine. After over an hour of this (and numerous alarms) I reached up and reset the apnea alarm from 20 seconds to 30 seconds. It stopped going off. Hmm...

This is why it would have been so nice to do the sleep study on THIS MACHINE. We could have seen what THIS MACHINE is doing, why and how it affects my breathing and sleep.

And I know some seem concerned that I am watching the screen too much, but please know that at night, I don't bother looking (most nights - once in a while I wake up enough to be curious) but most of the time, I wake up and just turn over and try to go back to sleep. Turning the screen saver off makes the screen LIGHT UP and it's very annoying at 3:00 in the morning. Even at the dimmest setting, it still lights up the room.

But these awakenings happen a lot during the night too. I use the daytime naps as a means to catch up on sleep (if I really need it) and sometimes gather more information about what is happening.

jamiswolf wrote:Indeed a difficult situation. My Dad had myesthenia gravis and I contiuously hoped and prayed that it never effected his respiratory muscles. Luckily it didn't and he lived to be 87 (hope I do that well).

My father had myasthenia gravis as well. His eyes were his worst problem, with fatigue plaguing him more later in his life. Ironically, he DID die of respiratory failure, but it had to do with a heart medication he was given more than his disease.

My doctors are stumped by my case, but are theorizing that I may have more than one issue going on, thus why it's difficult to pinpoint. I tested negative for myasthenia gravis, but my eye involvement is making them think long and hard.

I've been taking Mestinon for about a month now and have seen slight improvement in my ability to read (I need to let my doc know this). I have a 2-hour window after each dose where reading is a bit easier - not great by any means, but I CAN manage to read a book some now.

Not a miracle cure by any means, but this, too, is a piece of the puzzle.

Madalot,
With my father's history of Myasthenia and three sisters with Parkinson's, i've been a bit of a hypochondriac wondering when I'll come down with a neuro-muscular disease...but knock on wood, only apnea so far.

Yes, my Dad mostly had ocular Myasthenia. I know he had undiagnosed apnea as well and he was a low energy guy. It would have been difficult to sort it out...whether from Myasthenia or apnea.

So sorry you're having to deal with this. I have a career of nursing behind me, and I only had one Myasthenia patient that I can recall. Very rare. So if the Mestinon is helping and even if you had a negative Tensilon test (they still using that?), and with eye involvement, it sounds like Myasthenia. Hope they get it sorted out for you soon.

Back to your machine. So it is apnea events (and the machine's response) that's waking you. Does your machine have a rise time adjustment? That might smooth out the transition. A longer rise.

Your first post in this thread made it look like you were totally obsessed with screen watching. It actually created a humorous image in my mind. So that's why you've gotten some comments about that.

Best wishes,
Jamis

can diaphragm muscle problems cause central apnea then? can they be cured by singing exercises or other exercise?
I can't figure out how I got the complex/central apneas

Neither of those two cause centrals, they most likely have neurological origins, though no one's entirely sure, but you seem more fixated on where they came from than in dealing with your OSA overall, or in testing the advice of everyone who has tried to help you with your questions and problems. It might be a good idea to not confuse Madalot's thread about ventilation with your questions about centrals, and possibly try to get an appointment with a neurologist specializing in sleep problems.

Jamis -- I think the general consensus is now that I somehow inherited a myasthenic problem from my dad and some other genetic defect from my mother. Unfortunately, they are both deceased so we can't confirm anything with them.

My father had myasthenia gravis (confirmed). My mother seemed okay until her 40's when she suddenly started having trouble walking much or doing much of anything. She got blamed (saying she was lazy) but the last 20 years of her life were -- let's say very familiar to me now. She was never diagnosed with anything.

I have been a weakling since childhood, but like my mother, I got blamed -- I was called "lazy" and told that I just wasn't trying hard enough. In my early 20's a friend asked me to run with her and when I couldn't keep up, she got angry and disgusted with me, borderline screaming "how did you let yourself get so out of shape???" and left me sitting in the park. I learned to try to hide my weakness and became embarrassed when it came to light.

It wasn't until I was 38 that a doctor noticed the weakness and said flat out "something is VERY wrong with you and we need to get a full neurological evaluation" --

I have been tested and check, poked and prodded -- still no definitive answers. My newest doctor is really focused on trying to figure it out -- bless his heart.

Ramp -- Yes, the Trilogy has Rise Time -- it is set to 4 right now. I think it goes as high as 6.