Trilogy - PTB Down - UPDATE

raisedfist wrote:

Madalot wrote:

raisedfist wrote:I am curious. While resting awake with the machine on - what is your typical respiratory rate change? I know your backup rate is set at 7bpm. Does your awake rr ever come close to matching your backup rate?

I have noticed my RR as low as 8bpm when I'm relaxing to go to sleep. However, the reports show that the AVERAGE through the course of the night is usually between 12 - 13 bpm.

I wonder if a certain percentage of the machine initiated breaths are simply from you spontaneously breathing at a rate of 6bpm or so, rather than a case of you simply being not able to make a spontaneous breath due to muscle weakness. It would be interesting to see after your current experiment, to see if changing your backup rate to 6pm has any effect on your PTB%.

But we must also consider that doing everything possible to increase the PTB% may not be even a desired goal. The purpose of a backup rate is to ensure that a machine breath occurs when the patient is unable to, whether that's due to central apnea/muscle weakness, but also to ensure an adequate breathing rate so that ventilation is not compromised (some people with NMD/similar disease tend to breathe at an inappropriately slow rate during sleep).

Very valid points/questions. My last Pulmo said that my backup rate was LOWER than they like but since I was okay on it, he wouldn't mess with it. I'll have to look, too, but I'm not sure how low the Trilogy will let you set the backup rate.

But it's interesting to question if I CAN'T initiate a breath or just am breathing so slowly that I don't.

How is this going Madalot? I was able to find out that a lower liter/minute flow means a more sensitive trigger. So from 1 - 9, closer to 1 is more sensitive. I've been test using a Trilogy and it works decent enough, although for whatever reason the airflow seems LOUD compared to my ResMed iVAPS machine. Even at lower pressures.

raisedfist wrote:How is this going Madalot? I was able to find out that a lower liter/minute flow means a more sensitive trigger. So from 1 - 9, closer to 1 is more sensitive. I've been test using a Trilogy and it works decent enough, although for whatever reason the airflow seems LOUD compared to my ResMed iVAPS machine. Even at lower pressures.

Yes. The lower the number, the more sensitive. Thanks!

Honestly? I haven't been paying much attention to any of it lately. I have been having a horrible time with awakenings. While I've always woken up a lot, I could always turn over and go right back to sleep. Now I can't go back to sleep. It's infuriating. I sleep for anywhere from 2-4.5 hours, then wake up. A few nights recently, I've gotten up at 3am and stayed up. One night, I tried to go back to sleep for 2.5 hours before giving up and getting up for the night around 4:30. With my neuromuscular disease, I need rest. Lots of rest. And I'm sure not getting it right now.

I did look at the DirectView download a few days ago and did see that the PTB gets worse right before that wake up. Meaning if I wake up at 2:30, right before that time my PTB takes a nosedive.

But here's the thing that has me confused. My minimum IPAP is 18. It looks to me like that pressure only increases slightly (maybe to 18.8 - 19) during those low PTB episodes so it's not like it's raising it super high from where I was.

Looking over the last few weeks - PTB hasn't improved. The average each night varies from pretty good (90's) to sometimes into the 70's.

I don't know. I'm Awfully tired these days...

Interesting about the noise difference between the Trilogy and the Resmed machine. I've always had a Trilogy so I have nothing to compare it to!

Madalot wrote:

raisedfist wrote:How is this going Madalot? I was able to find out that a lower liter/minute flow means a more sensitive trigger. So from 1 - 9, closer to 1 is more sensitive. I've been test using a Trilogy and it works decent enough, although for whatever reason the airflow seems LOUD compared to my ResMed iVAPS machine. Even at lower pressures.

Yes. The lower the number, the more sensitive. Thanks!

Honestly? I haven't been paying much attention to any of it lately. I have been having a horrible time with awakenings. While I've always woken up a lot, I could always turn over and go right back to sleep. Now I can't go back to sleep. It's infuriating. I sleep for anywhere from 2-4.5 hours, then wake up. A few nights recently, I've gotten up at 3am and stayed up. One night, I tried to go back to sleep for 2.5 hours before giving up and getting up for the night around 4:30. With my neuromuscular disease, I need rest. Lots of rest. And I'm sure not getting it right now.

I did look at the DirectView download a few days ago and did see that the PTB gets worse right before that wake up. Meaning if I wake up at 2:30, right before that time my PTB takes a nosedive.

But here's the thing that has me confused. My minimum IPAP is 18. It looks to me like that pressure only increases slightly (maybe to 18.8 - 19) during those low PTB episodes so it's not like it's raising it super high from where I was.

Looking over the last few weeks - PTB hasn't improved. The average each night varies from pretty good (90's) to sometimes into the 70's.

I don't know. I'm Awfully tired these days...

Interesting about the noise difference between the Trilogy and the Resmed machine. I've always had a Trilogy so I have nothing to compare it to!

That is interesting. Maybe the change from 5 to 4 l/m is not drastic enough. I have seen recommended on an AVAPS guide to set it anywhere from 1 - 3. The idea is to set is as sensitive as possible without causing false triggering (trigger when you're not actually taking in a breath yourself). So maybe try starting from 1 and go up only until no patient-vent breathing issues occur.

I wake up a few times during the night as well - not sure exactly why. I am going to try going off caffeine completely and see if that does anything.

raisedfist wrote:

Madalot wrote:

raisedfist wrote:How is this going Madalot? I was able to find out that a lower liter/minute flow means a more sensitive trigger. So from 1 - 9, closer to 1 is more sensitive. I've been test using a Trilogy and it works decent enough, although for whatever reason the airflow seems LOUD compared to my ResMed iVAPS machine. Even at lower pressures.

Yes. The lower the number, the more sensitive. Thanks!

Honestly? I haven't been paying much attention to any of it lately. I have been having a horrible time with awakenings. While I've always woken up a lot, I could always turn over and go right back to sleep. Now I can't go back to sleep. It's infuriating. I sleep for anywhere from 2-4.5 hours, then wake up. A few nights recently, I've gotten up at 3am and stayed up. One night, I tried to go back to sleep for 2.5 hours before giving up and getting up for the night around 4:30. With my neuromuscular disease, I need rest. Lots of rest. And I'm sure not getting it right now.

I did look at the DirectView download a few days ago and did see that the PTB gets worse right before that wake up. Meaning if I wake up at 2:30, right before that time my PTB takes a nosedive.

But here's the thing that has me confused. My minimum IPAP is 18. It looks to me like that pressure only increases slightly (maybe to 18.8 - 19) during those low PTB episodes so it's not like it's raising it super high from where I was.

Looking over the last few weeks - PTB hasn't improved. The average each night varies from pretty good (90's) to sometimes into the 70's.

I don't know. I'm Awfully tired these days...

Interesting about the noise difference between the Trilogy and the Resmed machine. I've always had a Trilogy so I have nothing to compare it to!

That is interesting. Maybe the change from 5 to 4 l/m is not drastic enough. I have seen recommended on an AVAPS guide to set it anywhere from 1 - 3. The idea is to set is as sensitive as possible without causing false triggering (trigger when you're not actually taking in a breath yourself). So maybe try starting from 1 and go up only until no patient-vent breathing issues occur.

I wake up a few times during the night as well - not sure exactly why. I am going to try going off caffeine completely and see if that does anything.

If I'm remembering correctly, we had to get this setting up enough to prevent the Trilogy from doing an IPAP when I wasn't really inhaling. At the lower settings, I wasn't inhaling at all, but the machine must have sensed a slight inhale and BAM! It was horrible.

I drink coffee also. My last cup of caffeinated is usually no later than 1:00 - 1:30pm. I have a cup of decaf a few nights a week after dinner. It's my once big vice and giving it up just isn't a good option for me. I have so few pleasures in this life...and coffee is one of them!