AVAPS-AE on MY Trilogy - Ongoing

[Madalot]

Perhaps it is a bad blower motor bearing.

Should *I* be seeing any error messages? Would they show up on the display?

[mollete]

You kids are going to love this.

The pulsations occur in a pattern:

• The beginning of an EPAP change.
• The end of an EPAP change.
• In the middle of the changes.

[Madalot]

You kids are going to love this.

The pulsations occur in a pattern:

• The beginning of an EPAP change.
• The end of an EPAP change.
• In the middle of the changes.

Remember, I'm just a dumb patient. What does this mean???

[mollete]

It means list the most recent patents on that thing.

[-SWS]

You kids are going to love this.

The pulsations occur in a pattern:

• The beginning of an EPAP change.
• The end of an EPAP change.
• In the middle of the changes.

As if it were an auto-EPAP design characteristic of some type...

I concur that I see pulsations in the pattern you described. I see three such complete patterns, starting with this first sequence:
1) a cluster of pulsations around the time that auto-EPAP transitions down,
2) a cluster of pulsations around the time that auto-EPAP transitions back up, and
3) a cluster of pulsations directly in the center of the above two events


Here's the kicker: Short of having either a crystal ball or a set schedule, the Trilogy SHOULD NOT be able to predict, in real time, where the center-occurrence for Madalot's "EPAP needs" will be. If that pulsation pattern manifests each time, then those center-occurrences of pulsations suggest:

1) the pulsations might be by design after all,
2) the initial auto-EPAP transitions are probably driven by Madalot's obstructive events, but
3) the duration of time spent at any given auto-EPAP pressure might be more driven by a schedule-and-poll type criteria set (poll/sample airway patency using the pulsations)

Madalot, your initial hypothesis might be right: The pulsations might be pressure-probing used by the auto-EPAP algorithm.

[Madalot]

I want to throw something out there, just as another thought. I may be way off base, but I want to put it out there.

Is there any possibility that what we're seeing is the machine responding to ME? I ask because we need to remember that I have a PROGRESSIVE Neuromuscular Disease (which one, we still do not know for sure). Things change with me sometimes over time where I can see the issue coming. Sometimes, it's like BAM -- problem.

Two years ago, my morning routine was what I call "The three S's" -- Use the bathroom (and clean up), then immediately into the shower to bathe & shave. In 2011, one morning I just felt too weak to continue to the shower after using the bathroom, deciding that I needed to get back into my wheelchair and rest for 15-20 minutes before continuing. I was hoping it was just a fluke, but I only managed another day or two of doing all three in sequence before the resting after the first "S" became the normal.

A few weeks ago, I realized that shaving, then continuing my shower -- too much. It was becoming DANGEROUS. Now, I have resorted to using an electric razor later in the day, which I DESPISE.

I share these because I can't help but wonder *IF* there's something more going on with me than the machine.

If you all see something in the information I've posted that makes me way off base or just unlikely, please tell me.

As I said -- throwing it out there to see what you all think.

[-SWS]

Madalot, I don't think the pulsations are specific to your NMD.

At this point I suspect the pulsations might be part of the Trilogy's auto-EPAP design. They would occur more often during shifts in bed, if the Trilogy pereived airway-patency changes during or immediately after those shifts.

[Madalot]

Madalot, I don't think the pulsations are specific to your NMD.

At this point I suspect the pulsations might be part of the Trilogy's auto-EPAP design. They would occur more often during shifts in bed, if the Trilogy pereived airway-patency changes during or immediately after those shifts.

How do I/we find out for sure whether these pulses are by design or equipment malfunction? If they are by design, I'm ready to move on to the next phase, which is to up the max EPAP one more cm (to 11). But if the machine is malfunctioning, continuing seems unwise.

I could call my DME and ask them, but I still haven't gotten the official go ahead to try AVAPS-AE and I asked over 2 weeks ago. Asking a question like this? I'm not sure I'll ever get an answer.

[-SWS]

It means list the most recent patents on that thing.

The uniformity of oscillation frequency and amplitude on the pressure graphs suggest Respironics is using a different forced oscillation technique (FOT) on Trilogy than the patency-detection technique they deployed on their PR System One PAP machines. I'm thinking these pulsations might be protected under one of Respironics' newer or older FOT patents---since companies don't always quickly implement what they patent.

How do I/we find out for sure whether these pulses are by design or equipment malfunction?

Well, if it's by design and proprietary, then Respironics might not be willing to discuss the pulsations with your DME. Sometimes companies freely disclose proprietary details---sometimes they don't. Still, your DME might be willing to ask Respironics if those pulsations are part of AVAPS-AE's auto-EPAP implementation.

[Madalot]

How do I/we find out for sure whether these pulses are by design or equipment malfunction?

Well, if it's by design and proprietary, then Respironics might not be willing to discuss the pulsations with your DME. Sometimes companies freely disclose proprietary details---sometimes they don't. Still, your DME might be willing to ask Respironics if those pulsations are part of AVAPS-AE's auto-EPAP implementation.

I have a call in now. Assuming I get a return call, I'll ask the question and see where it goes.

On the chance I do NOT get a call anytime in the foreseeable future, is there any reason NOT to keep moving forward on this experiment? I mean, the pulses can be a bit annoying, but I haven't seen where they are harmful.

[-SWS]

The annoyance itself might explain the slight drop in PTB. The pulsations might be uncomfortable enough to cause awakenings and a few more wake-related central apneas.

Dunno what to suggest about continuing the experiment, since I think it's important for your medical team to be in the supervisory loop.

[Madalot]

Sounds fair and reasonable. I won't make any decisions right now, waiting to see if I hear from my DME today. If I don't hear anything, I'll use my best judgement as to whether or not to continue. Might depend on my mood tonight. There's a part of me that really wants to keep moving forward with this.

[-SWS]

The annoyance itself might explain the slight drop in PTB. The pulsations might be uncomfortable enough to cause awakenings and a few more wake-related central apneas.

Cancel that idea, since your PTB dropped slightly in ordinary AVAPS mode. Can't blame that drop on AVAPS-AE pulses.

[Madalot]

The annoyance itself might explain the slight drop in PTB. The pulsations might be uncomfortable enough to cause awakenings and a few more wake-related central apneas.

Cancel that idea, since your PTB dropped slightly in ordinary AVAPS mode. Can't blame that drop on AVAPS-AE pulses.

We've discussed an awful lot in a few days. I can't keep it all straight myself. The major PTB drop occurred when I got over zealous on the AVAPS-AE settings that first night.

I'm still pondering this, but unless something new comes to light before bedtime tonight, I am seriously considering moving forward and going to max EPAP of 11.

As usual, I will be checking the forum regularly until my scheduled bedtime of around 11pm. I use Tapatalk on my phone and have it set to notify me of posts & PM's as well.

[-SWS]

Agreed about when and why the PTB nose-dive occured: too many big changes all at once. I don't find the slight PTB differences between machines (w/different firmware levels) to be a problem.