Issues with Respironics Trilogy/Specialists

[Madalot]

I believe you are going to need a very special software program from Respironics called Direct View to see any data on that SD card.
SleepyHead and/or Encore aren't compatible with the Trilogy machines.

Yes, Pugsy is correct. And Direct View does NOT track any sleep related data (other than apneas but the data makes no sense). It WILL track your averages including Vte, IPAP/EPAP, PTB, Minute Ventilation, etc.

[Matt00926]

I believe you are going to need a very special software program from Respironics called Direct View to see any data on that SD card.
SleepyHead and/or Encore aren't compatible with the Trilogy machines.

Yes, Pugsy is correct. And Direct View does NOT track any sleep related data (other than apneas but the data makes no sense). It WILL track your averages including Vte, IPAP/EPAP, PTB, Minute Ventilation, etc.

Interesting, well thankfully I do not really suffer from apneas. Just low SpO2 and high CO2. I will have to look around to see if this software can be acquired but it doesn't look likely from a cursory search.

[Madalot]

I believe you are going to need a very special software program from Respironics called Direct View to see any data on that SD card.
SleepyHead and/or Encore aren't compatible with the Trilogy machines.

Yes, Pugsy is correct. And Direct View does NOT track any sleep related data (other than apneas but the data makes no sense). It WILL track your averages including Vte, IPAP/EPAP, PTB, Minute Ventilation, etc.

Interesting, well thankfully I do not really suffer from apneas. Just low SpO2 and high CO2. I will have to look around to see if this software can be acquired but it doesn't look likely from a cursory search.

Ask your RT if he has it and if so, if he'll give you a copy of it.

[Matt00926]

I am going to try S mode Passive AVAPS without the -AE tonight. I want to see how I sleep without the machine fluttering and revving up so often. I also don't think I need the auto-adjustable EPAP as I do not suffer from obstructive apneas and I do need the larger pressure support. Plus, with every corresponding raise in EPAP I believe you are supposed to increase the IPAP the same amount and a IPAP of 20 is already uncomfortable enough!

I do need to buy a overnight spo2 monitor so that I can record a few days or a week of data. My RT gave me one for overnight but I would like to check periodically on my own.


Test settings will be:

Max IPAP: 20
Min IPAP: 14
EPAP: 4 (so max pressure support will be 16 and the min will be 10)
AVAPS Rate: 1
Target tidal volume: 345ml
Rise Time: 3

[Madalot]

Checking in -- how did it go last night on the different settings?

[Matt00926]

Checking in -- how did it go last night on the different settings?

Not bad! I definitely slept more than the night before, maybe 5-6 hours in total. No flutter alone was worth it. The only problem I had was a bit of adjusting with the FF mask, once I lay down I seem to get more leaks and I need to tighten things up. I am going to get back into the habit of sleep hygiene--washing my my mask every day with a CPAP wipe and washing my face before bed. I think that will help.

I played with rise time and the max setting, 6, is the most comfortable. According to ResMed's website, "A slower rise time and lower cycle sensitivity, along with an adequate Ti Min, ensure that patients with weak inspiratory effort have adequate time for gas exchange." This should help with obtaining a higher average tidal volume because it stays in IPAP/Inhalation longer before switching to EPAP.


I think I will keep the same settings for a week and see how I feel. According to research I've done, restrictive patients can see great improvement in terms of gas exchange at night/during the day within 5 days of treatment and is sustained long-term (even with disease progression, although since i have kyphoscoliosis i think reduced chest wall compliance is a slower progression than, say, a NMD).

I ended up using these settings:

Mode: S Passive AVAPS
Max IPAP: 20
Min IPAP: 14
EPAP: 4
Max Pressure Support: 16
Min Pressure Support: 10
Rise Time: 6

[Madalot]

Checking in -- how did it go last night on the different settings?

Not bad! I definitely slept more than the night before, maybe 5-6 hours in total. No flutter alone was worth it. The only problem I had was a bit of adjusting with the FF mask, once I lay down I seem to get more leaks and I need to tighten things up. I am going to get back into the habit of sleep hygiene--washing my my mask every day with a CPAP wipe and washing my face before bed. I think that will help.

I'm glad it was better. I would encourage wiping the mask daily and washing your face before bed. I do this nightly and it DOES help with leaks and such.

I think your plan to stick with the settings, as long as you feel better, is a smart idea. Your settings are similar to mine with just a few differences.

Keep us posted on how you are doing.

[Madalot]

I was just thinking about something. Our situations are very similar. You are using S (Spontaneous) mode, but is there some reason why you're not using S/T (Spontaneous/Timed) -- ?

Obviously there may be a very good reason for you NOT to be using it, but I'm curious.

[Matt00926]

I was just thinking about something. Our situations are very similar. You are using S (Spontaneous) mode, but is there some reason why you're not using S/T (Spontaneous/Timed) -- ?

Obviously there may be a very good reason for you NOT to be using it, but I'm curious.

I'm not sure. S/T is basically a backup rate so it will prompt me to breathe if I don't breathe on my own, right? I did a quick Google search and it does say a backup rate can be helpful for restrictive thoracic conditions--especially during REM sleep (when oxygen saturation seems to dip the most).

Would it be easier to just stick with AVAPS-AE, which provides a backup rate, and just put the min and max EPAP to the same value so that there is no flutter/revving up? From my Sleep Study recommendations and my RT's suggestions, we have left the breathe rate on auto.


Who would have thought that NIPPV therapy could be so complicated.

[Madalot]

I was just thinking about something. Our situations are very similar. You are using S (Spontaneous) mode, but is there some reason why you're not using S/T (Spontaneous/Timed) -- ?

Obviously there may be a very good reason for you NOT to be using it, but I'm curious.

I'm not sure. S/T is basically a backup rate so it will prompt me to breathe if I don't breathe on my own, right? I did a quick Google search and it does say a backup rate can be helpful for restrictive thoracic conditions--especially during REM sleep (when oxygen saturation seems to dip the most).

Would it be easier to just stick with AVAPS-AE, which provides a backup rate, and just put the min and max EPAP to the same value so that there is no flutter/revving up? From my Sleep Study recommendations and my RT's suggestions, we have left the breathe rate on auto.


Who would have thought that NIPPV therapy could be so complicated.

I'm not sure about just setting AVAPS-AE that way.

I am using S/T mode with a backup rate of 7 bpm (any faster and I feel rushed to breathe).

Yes, there are so many settings/variables that it takes a long time to get things tweaked. My original RT/doctor put me in S/T with AVAPS and despite trying MANY MANY different modes/settings, I've always gone back to S/T with AVAPS and a backup rate of 7 bpm. Only major difference now is my new Pulmonologist upped my minimum IPAP from 15 to 18 to try to get my oxygen line more stable (it dipped a little more than he liked). And since my average IPAP is usually closer to 19, it was a good call.

Oh -- and I DO have my own recording pulse oximeter. I bought it way back and my doctor is THRILLED that I can do all this on my own. I'm about ready for a new one because the screen is pretty dim on it. I'll probably get the same thing (wrist type) because it's easier on me when sleeping.

[Matt00926]

I was just thinking about something. Our situations are very similar. You are using S (Spontaneous) mode, but is there some reason why you're not using S/T (Spontaneous/Timed) -- ?

Obviously there may be a very good reason for you NOT to be using it, but I'm curious.

I'm not sure. S/T is basically a backup rate so it will prompt me to breathe if I don't breathe on my own, right? I did a quick Google search and it does say a backup rate can be helpful for restrictive thoracic conditions--especially during REM sleep (when oxygen saturation seems to dip the most).

Would it be easier to just stick with AVAPS-AE, which provides a backup rate, and just put the min and max EPAP to the same value so that there is no flutter/revving up? From my Sleep Study recommendations and my RT's suggestions, we have left the breathe rate on auto.


Who would have thought that NIPPV therapy could be so complicated.

I'm not sure about just setting AVAPS-AE that way.

I am using S/T mode with a backup rate of 7 bpm (any faster and I feel rushed to breathe).

Yes, there are so many settings/variables that it takes a long time to get things tweaked. My original RT/doctor put me in S/T with AVAPS and despite trying MANY MANY different modes/settings, I've always gone back to S/T with AVAPS and a backup rate of 7 bpm. Only major difference now is my new Pulmonologist upped my minimum IPAP from 15 to 18 to try to get my oxygen line more stable (it dipped a little more than he liked). And since my average IPAP is usually closer to 19, it was a good call.

Oh -- and I DO have my own recording pulse oximeter. I bought it way back and my doctor is THRILLED that I can do all this on my own. I'm about ready for a new one because the screen is pretty dim on it. I'll probably get the same thing (wrist type) because it's easier on me when sleeping.

I think I will have a good discussion when I see a new sleep physician closer to the end of the month.

I think AVAPS use an "intelligent" backup rate when in -AE mode, so it should auto adjust (hopefully not waking me up when my respiratory efforts change during sleep) based on your spontaneous breathing rate at the time. It does this to maintain efforts to reach target tidal volume. Hopefully this will take some of the trial and error "guess work" out of the equation.

[Madalot]

I think I will have a good discussion when I see a new sleep physician closer to the end of the month.

I think AVAPS use an "intelligent" backup rate when in -AE mode, so it should auto adjust (hopefully not waking me up when my respiratory efforts change during sleep) based on your spontaneous breathing rate at the time. It does this to maintain efforts to reach target tidal volume. Hopefully this will take some of the trial and error "guess work" out of the equation.

I am not positive and would have to look, but I thought there was an option to do it automatically or set a fixed rate. If I'm remembering correctly, the auto rate tries to make me breathe faster than I am comfortable so it's better for me to have my set rate of 7.

[Matt00926]

I think I will have a good discussion when I see a new sleep physician closer to the end of the month.

I think AVAPS use an "intelligent" backup rate when in -AE mode, so it should auto adjust (hopefully not waking me up when my respiratory efforts change during sleep) based on your spontaneous breathing rate at the time. It does this to maintain efforts to reach target tidal volume. Hopefully this will take some of the trial and error "guess work" out of the equation.

I am not positive and would have to look, but I thought there was an option to do it automatically or set a fixed rate. If I'm remembering correctly, the auto rate tries to make me breathe faster than I am comfortable so it's better for me to have my set rate of 7.

I have the option to set the backup rate manually but I honestly have no idea what I'm doing when it comes to backup rate. Or respiration rate for that matter, since you can't measure your own accurately. I've looked at my recorded RR from past doctor visits but it usually varies from 14 - 18 so I'm not sure what appropriate value I would set it at. And I assume RR can change over time naturally due to sickness, disease progression, etc. Another question to ask the paid experts!

I think I will keep it at auto to see what happens, unless of course it's entirely uncomfortable. I think my breathing rate would be okay since I increased the rise time substantially to 600. I think it is only during REM sleep that my respiratory rate gets wacky due to muscle weakness; hopefully the auto rate kicking in wouldn't wake me up.

[Madalot]

I think I will have a good discussion when I see a new sleep physician closer to the end of the month.

I think AVAPS use an "intelligent" backup rate when in -AE mode, so it should auto adjust (hopefully not waking me up when my respiratory efforts change during sleep) based on your spontaneous breathing rate at the time. It does this to maintain efforts to reach target tidal volume. Hopefully this will take some of the trial and error "guess work" out of the equation.

I am not positive and would have to look, but I thought there was an option to do it automatically or set a fixed rate. If I'm remembering correctly, the auto rate tries to make me breathe faster than I am comfortable so it's better for me to have my set rate of 7.

I have the option to set the backup rate manually but I honestly have no idea what I'm doing when it comes to backup rate. Or respiration rate for that matter, since you can't measure your own accurately. I've looked at my recorded RR from past doctor visits but it usually varies from 14 - 18 so I'm not sure what appropriate value I would set it at. And I assume RR can change over time naturally due to sickness, disease progression, etc. Another question to ask the paid experts!

I think I will keep it at auto to see what happens, unless of course it's entirely uncomfortable. I think my breathing rate would be okay since I increased the rise time substantially to 600. I think it is only during REM sleep that my respiratory rate gets wacky due to muscle weakness; hopefully the auto rate kicking in wouldn't wake me up.

My setting my backup rate to 7 only means that my RR cannot drop below that. I can breathe faster without any issues from the machine. When I first lay down, my RR is 10-14 depending on how settled I get. The machine won't let my rate go BELOW 7, which as you said, happens when I get into REM sleep. And 7 is a very slow RR, but when I'm totally relaxed, anything higher sometimes rushes me to inhale before I am ready.

[Matt00926]

I think I will have a good discussion when I see a new sleep physician closer to the end of the month.

I think AVAPS use an "intelligent" backup rate when in -AE mode, so it should auto adjust (hopefully not waking me up when my respiratory efforts change during sleep) based on your spontaneous breathing rate at the time. It does this to maintain efforts to reach target tidal volume. Hopefully this will take some of the trial and error "guess work" out of the equation.

I am not positive and would have to look, but I thought there was an option to do it automatically or set a fixed rate. If I'm remembering correctly, the auto rate tries to make me breathe faster than I am comfortable so it's better for me to have my set rate of 7.

I have the option to set the backup rate manually but I honestly have no idea what I'm doing when it comes to backup rate. Or respiration rate for that matter, since you can't measure your own accurately. I've looked at my recorded RR from past doctor visits but it usually varies from 14 - 18 so I'm not sure what appropriate value I would set it at. And I assume RR can change over time naturally due to sickness, disease progression, etc. Another question to ask the paid experts!

I think I will keep it at auto to see what happens, unless of course it's entirely uncomfortable. I think my breathing rate would be okay since I increased the rise time substantially to 600. I think it is only during REM sleep that my respiratory rate gets wacky due to muscle weakness; hopefully the auto rate kicking in wouldn't wake me up.

My setting my backup rate to 7 only means that my RR cannot drop below that. I can breathe faster without any issues from the machine. When I first lay down, my RR is 10-14 depending on how settled I get. The machine won't let my rate go BELOW 7, which as you said, happens when I get into REM sleep. And 7 is a very slow RR, but when I'm totally relaxed, anything higher sometimes rushes me to inhale before I am ready.

Interesting. Per the Trilogy, my resting rate is usually around 23-25. If I lay perfectly still and stop concentrating on breathing it goes down to 18-19. Then again, we are actively thinking about the respiratory rate and how we breathe when we are monitoring the screen, so that effects it as well.

Thanks for the explanation on backup rate, I will ask when I go to see the Dr. what an appropriate backup rate would be, if any.

I really wish the Trilogy allowed the patient to monitor their therapy, although it's understandable since it's not a very common machine.