Issues with Respironics Trilogy/Specialists

[Madalot]

I thought you had switched to regular AVAPS. Maybe when you see your doctor, you can switch if the pulses were bothersome, which I think you said they were.

The pulses don't occur because I set the EPAP min/max at the same value. I believe the pulses are from the auto-adjusting EPAP.

I chose AVAPS-AE because aside from AVAPS and auto-adjusting EPAP, there is also the intelligent backup breath rate that I figure cannot hurt.

Last night I put the IPAP max at 19 and the EPAP min/max at 4. I've been having to use ramp as the large pressure support is uncomfortable to say the least.

Ah, gotcha. My bad. I got confused. Thanks for clarifying that for me.

[Matt00926]

I saw a new doctor who thinks my hypoventilation is being adequately treated. the plan is for me to keep the same settings for 2 weeks and then send the doc the compliance report from the DME. He will then advise me if i need to adjust any settings per the data he looks at.

[Matt00926]

Madalot:

Would you mind posting your current settings on the Trilogy?


Mine are as follows:

Mode: AVAPS-AE
AVAPS Rate: 1.0
Max Inspiratory pressure: 20
Max Pressure Support: 15
Min Pressure Support: 6
Min/Max EPAP: 5/5
Breath Rate: Auto
Trigger: Auto Trak/Sensitive

Tidal Volume: 300 (which is 6 ml/kg. i've been playing with 300 (6), 350 (7) and 400 (8). I can't seem to maintain the higher VT well even when awake and it basically maxes out the inspiratory pressure most of the time which is annoying when trying to sleep!)


I just purchased the CMS recording pulse ox which arrives on Monday so I'm going to make sure that I'm getting adequate oxygenation with the "lower" target tidal volume set. My new doc wants to see this data anyway so he can further guide my therapy.

[Madalot]

I have the Dual Prescription Enabled. Primary settings are the basic AVAPS (which I am using now) and the Secondary are AVAPS-AE. I was using AVAPS-AE for a while, but found the pulses too disruptive to my sleep. I noticed that you are using more automatic settings than I am. I found that what the machine wanted to do just didn't work for me, thus why I have more definite settings.

PRIMARY:
Mode S/T
AVAPS ON
AVAPS Rate 3.0
Tidal Volume 400
IPAP Max 23
IPAP Min 18
EPAP 10
Breath Rate 7
Inspiratory Time 1.5 Seconds
Flow Trigger
Flow Trigger Sensitivity 6.0
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
All Alarms OFF


SECONDARY:
Mode AVAPS-AE
AVAPS Rate 3.0
Tidal Volume 400
Max Pressure 23
PS Max 13
PS Min 8
EPAP Max 14
EPAP Min 10
Breath Rate 7
Inspiratory Time 1.5 Seconds
Flow Trigger
Flow Trigger Sensitivity 6.0
Flow Cycle Sensitivity 25%
Rise Time 4
Ramp OFF
All Alarms OFF

[Matt00926]

I'm not really sure how to properly set the breaths per minute rate. I believe it's based on your spontaneous respiratory rate but that isn't something that you can measure yourself. When I watch the Trilogy while awake, my respiratory rate seems to go from about 18 - 24.

[Madalot]

I'm not really sure how to properly set the breaths per minute rate. I believe it's based on your spontaneous respiratory rate but that isn't something that you can measure yourself. When I watch the Trilogy while awake, my respiratory rate seems to go from about 18 - 24.

The Breath Rate is the LOWEST the machine will let you go. If you are breathing at 12-14, that's fine. The machine doesn't care. It just won't let you go below what you have set for. For me, anything higher than 7 rushes me when I'm relaxed. I start out breathing faster (like you said) but as I start to relax and fall asleep, my breathing slows way down and if my rate is any higher than 7, it makes me feel too rushed.

They started it at 10 for me and we kept working on it until we figured out that 7 was the number for me.

[Matt00926]

I'm not really sure how to properly set the breaths per minute rate. I believe it's based on your spontaneous respiratory rate but that isn't something that you can measure yourself. When I watch the Trilogy while awake, my respiratory rate seems to go from about 18 - 24.

The Breath Rate is the LOWEST the machine will let you go. If you are breathing at 12-14, that's fine. The machine doesn't care. It just won't let you go below what you have set for. For me, anything higher than 7 rushes me when I'm relaxed. I start out breathing faster (like you said) but as I start to relax and fall asleep, my breathing slows way down and if my rate is any higher than 7, it makes me feel too rushed.

They started it at 10 for me and we kept working on it until we figured out that 7 was the number for me.

Ah okay, I guess if my RT comes back over to my apartment I will ask him about this setting. I would like to set a number since then it allows me to change the Ti Min and Ti Max settings. On auto breath rate this is not allowed. I think I will set a value for the breathe rate, since it's just the lowest it allows you to go, and see what happens.

[Matt00926]

Maybe I should just PM you by now lol...

I set my breath rate at 12bpm and inspiratory time at 1.5 seconds last night. Does the inspiratory time mean that each inhalation is held for that long? Or like the breath rate, is that the targeted minimum inhalation time?

I noticed that my respiratory rate seemed to relax more, it appears to be between 15-19 when the inspiratory time is longer. Also, the IPAP pressure stayed pretty calm and upon waking up was not maxed out (at 19) even. I was able to fall asleep pretty easily, and when waking up, even fall back asleep which hardly ever happens.

I subjectively feel better even with a target tidal volume of only 300 so I am going to keep these exact settings for a week.

I did a lot of reading yesterday (at work ) and it seems for restrictive lung patients that excessive tidal volume targets can be problematic. I also read a forum post from a person who has scoliosis and he said using a longer inspiratory time made a night and day difference, and he did not need to use the crazy high pressures he was prescribed in order to achieve oxygen saturation above 90%.

I cannot wait for my recording pulse ox to come in the mail.

[Madalot]

Maybe I should just PM you by now lol..

Honestly, there are probably people following this, even though they don't post, so it's probably better we keep it open for them too. If you want to ask me something specific that others don't need to see, feel free to PM me, k?

I set my breath rate at 12bpm and inspiratory time at 1.5 seconds last night. Does the inspiratory time mean that each inhalation is held for that long? Or like the breath rate, is that the targeted minimum inhalation time?

It's been a LONG time since I've researched and studied all this and I'd feel better if one of the "experts" answered this. However, it is my belief that the Inspiratory Time only applies when the machine is delivering your breath and then yes, that's how long it gives you for inhalation. If you are breathing on your own, your regular breathing sets the time for both inhale & exhale.

Now, if I'm wrong on this, I hope like heck somebody smarter than me corrects this.

I cannot wait for my recording pulse ox to come in the mail.

I have one and love it. I only use it once in a while now, but my doctor is THRILLED I have it and monitor my own levels without his having to worry too much. He knows that if there's an issue, I'll get in touch with him.

[Matt00926]

Honestly, there are probably people following this, even though they don't post, so it's probably better we keep it open for them too. If you want to ask me something specific that others don't need to see, feel free to PM me, k?

It's been a LONG time since I've researched and studied all this and I'd feel better if one of the "experts" answered this. However, it is my belief that the Inspiratory Time only applies when the machine is delivering your breath and then yes, that's how long it gives you for inhalation. If you are breathing on your own, your regular breathing sets the time for both inhale & exhale.

Now, if I'm wrong on this, I hope like heck somebody smarter than me corrects this.

I have one and love it. I only use it once in a while now, but my doctor is THRILLED I have it and monitor my own levels without his having to worry too much. He knows that if there's an issue, I'll get in touch with him.

Good point, if this thread wasn't of interest to someone then they simply wouldn't click it. So no harm done by conversing in this manner.

Regarding inspiratory time, I think that makes sense. It's funny that the setting is different on the Trilogy. When I used the BiPAP S mode on my Resmed AIrCurve 10 it had settings for both Ti Min and Ti Max. I think it's because the AVAPS algorithm uses volume assurance instead of static pressure support, so the Trilogy will use the set inspiratory time up until the time the target tidal volume is achieved, and then it switches over to EPAP.

I mostly just want to compare the oxygen saturation results to see what changing a certain machine setting does or doesn't do. It sucks that if you are not receiving adequate ventilation you must sacrifice some comfort.

[Madalot]

I mostly just want to compare the oxygen saturation results to see what changing a certain machine setting does or doesn't do. It sucks that if you are not receiving adequate ventilation you must sacrifice some comfort.

I WAS using an oxygen concentrator (2L bled into the Trilogy). My doctor said he felt I could probably give it up, but I thought I slept better with it -- UNTIL the damned thing started clanking and sounding like an airplane. DME brought me like 5 different ones and I finally gave up and took it out completely (it's here, I'm just not using it).

My oxygen level dropped to 90% off the oxygen. Close, but still okay. I'll test again before I see my doctor in December and we'll decide then if I HAVE to have it or can skip it. My bedroom is a lot quieter without it.

[Matt00926]

I mostly just want to compare the oxygen saturation results to see what changing a certain machine setting does or doesn't do. It sucks that if you are not receiving adequate ventilation you must sacrifice some comfort.

I WAS using an oxygen concentrator (2L bled into the Trilogy). My doctor said he felt I could probably give it up, but I thought I slept better with it -- UNTIL the damned thing started clanking and sounding like an airplane. DME brought me like 5 different ones and I finally gave up and took it out completely (it's here, I'm just not using it).

My oxygen level dropped to 90% off the oxygen. Close, but still okay. I'll test again before I see my doctor in December and we'll decide then if I HAVE to have it or can skip it. My bedroom is a lot quieter without it.

Did you try the Phillips Respironics EverFlo Q oxygen concentrator? I used one for a few months last year after a lengthy hospital stay and it was very quiet. I've used other ones and they were incredibly loud.

During my last sleep study I had a mean oxygen saturation of 93% thankfully. I HATED used the nasal cannula because my nose would always get so dry and full of gunk.

[Madalot]

Did you try the Phillips Respironics EverFlo Q oxygen concentrator?

No, my DME doesn't carry that one, apparently. It was suggested that we move the concentrator into another room, but our setup just isn't conducive to it. I've been off the oxygen for several months and I think I'm good without it. I'll do an overnight here in the next few weeks to make sure, but I sleep and feel okay. Plus the quiet is divine!!!

[Matt00926]

Did you try the Phillips Respironics EverFlo Q oxygen concentrator?

No, my DME doesn't carry that one, apparently. It was suggested that we move the concentrator into another room, but our setup just isn't conducive to it. I've been off the oxygen for several months and I think I'm good without it. I'll do an overnight here in the next few weeks to make sure, but I sleep and feel okay. Plus the quiet is divine!!!

When I used to have a loud one I put it in a room downstairs and ran a 50 foot tube from my bedroom and draped it from the staircase railing. I actually still have it, the DME never came at scheduled pick up time but I think in their system they marked it as picked up because I haven't gotten a bill in many months

[Madalot]

Did you try the Phillips Respironics EverFlo Q oxygen concentrator?

No, my DME doesn't carry that one, apparently. It was suggested that we move the concentrator into another room, but our setup just isn't conducive to it. I've been off the oxygen for several months and I think I'm good without it. I'll do an overnight here in the next few weeks to make sure, but I sleep and feel okay. Plus the quiet is divine!!!

When I used to have a loud one I put it in a room downstairs and ran a 50 foot tube from my bedroom and draped it from the staircase railing. I actually still have it, the DME never came at scheduled pick up time but I think in their system they marked it as picked up because I haven't gotten a bill in many months

This was suggested to me by a lot of people and we DID consider it. But our house is a Cape Cod style with the master bedroom on the main floor, right off the foyer to the front door. The staircase to the upstairs is right behind my head. No matter how we tried to run the lines, a doorway, staircase or door opening would have been in the way. Sure, we could have figured out SOME way to do it, but it would have been a major pain in the butt, plus I would have to buy an electrical cord system that would allow me to turn it on/off from the bed (I have a rare Muscular Dystrophy).

All in all, it seemed easier to try going without it, which is what I am doing now.