Trilogy - PTB Down - UPDATE

raisedfist · Post by **raisedfist** » Wed Jul 26, 2017 8:55 am

Madalot wrote:
raisedfist wrote:The lab protocols and what they have to offer have varied highly in my experience. I just did a follow up at a different university lab and they use the new DreamStation BiPAP AVAPS machines. I believe the IPAP goes up to 30CMH20 and it has the auto-EPAP option as well. The bonus is that it is way more portable than the Trilogy. It of course probably doesn't have all the various modes or bells and whistles that the Trilogy has such as the battery but for a "simple" S/T AVAPS or AVAPS-AE user it would work just fine.
My last sleep study was a major ordeal. I had spoken with my doctor and knew she and I were on the same page about what we were doing. After a lot of hassle, I finally got someone on the phone at the lab who said they were doing a basic BIPAP study, which I knew was wrong. It ended up delaying the study for WEEKS while we tried to get the lab to "get it" that we needed to do an AVAPS study. They refused any Trilogy, despite RESPIRONICS offering to send them one for my study. In the end, we "settled" on the Omni (?? still not sure that's what it was) in AVAPS mode.

I tried, on my own with my new doctor's approval, the AVAPS-AE mode, but found the FOT's so disturbing that I had to stop. I actually have it as my Secondary prescription if I ever want to revisit that.

Another sleep study would be a major ordeal for us right now. The new doctor/university is 1.5 hours away and I can't drive myself. My husband would have to take me and would have to stay overnight. We have some other family members with medical issues right now that my husband has to deal with. He works 3 jobs (essentially) and now has to take family members for appointments (and take care of them in other ways) so time to drive me for a sleep study - kind of hard.

So, best plan right now is to my original plan. Wait until I stop working and see if at least the awakenings settle down (less stress). The PTB IS down, but the Trilogy is obviously handling them just fine. I'll try to do an overnight this weekend just to make sure that aspect isn't an issue.

I agree that on the Trilogy, the AVAPS-AE feature is less than ideal. I was surprised that the FOT's are actually much softer on the DreamStation; I didn't notice them nearly as much. The Auto-EPAP is not really needed if you titrate the EPAP properly, but it CAN be helpful for some people who have difficulty breathing out against a higher EPAP - so the range allows the EPAP to stay relatively low until an event occurs, and then hopefully they are asleep when the algorithm responds to keep an open/patent airway. My guess is there is ignorance between people who design this stuff since they probably never actually use it and try to sleep with it.

I wouldn't necessarily worry about the PTB - I think the main think to focus attention on and solve is your frequent awakenings and your lack of refreshing sleep. Obviously the two phenomenon could be related.

One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.

Madalot · Post by **Madalot** » Wed Jul 26, 2017 9:04 am

raisedfist wrote:One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.

I have done this in the past, but it was a LONG time ago. Definitely worth revisiting. I can easily set that up but would prefer to do it over a weekend just so if something goes awry, I don't have to be too coherent during the day.

Thanks for the suggestion and I'll give it a try starting Saturday. Since my Secondary is already AVAPS-AE, it's really only a couple of changes to set it up. I REALLY need to do an overnight and I'd like that on my current settings so I'll do that Friday, then make the changes for Saturday night.

raisedfist · Post by **raisedfist** » Wed Jul 26, 2017 9:29 am

Madalot wrote:
raisedfist wrote:One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.
I have done this in the past, but it was a LONG time ago. Definitely worth revisiting. I can easily set that up but would prefer to do it over a weekend just so if something goes awry, I don't have to be too coherent during the day.

Thanks for the suggestion and I'll give it a try starting Saturday. Since my Secondary is already AVAPS-AE, it's really only a couple of changes to set it up. I REALLY need to do an overnight and I'd like that on my current settings so I'll do that Friday, then make the changes for Saturday night.

Will be waiting to see the results of the pulse ox and then the settings change. I know that for me, if my trigger setting is not set to the most sensitive option, even while awake there are times when I inhale and nothing happens. My PTB% goes up to 98-99% with the sensitivity high.

Madalot · Post by **Madalot** » Wed Jul 26, 2017 9:36 am

raisedfist wrote:
Madalot wrote:
raisedfist wrote:One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.
I have done this in the past, but it was a LONG time ago. Definitely worth revisiting. I can easily set that up but would prefer to do it over a weekend just so if something goes awry, I don't have to be too coherent during the day.

Thanks for the suggestion and I'll give it a try starting Saturday. Since my Secondary is already AVAPS-AE, it's really only a couple of changes to set it up. I REALLY need to do an overnight and I'd like that on my current settings so I'll do that Friday, then make the changes for Saturday night.
Will be waiting to see the results of the pulse ox and then the settings change. I know that for me, if my trigger setting is not set to the most sensitive option, even while awake there are times when I inhale and nothing happens. My PTB% goes up to 98-99% with the sensitivity high.

Interesting. Back in the early days of this journey, that's EXACTLY what happened with me on regular BIPAP. I had a HORRIBLE time convincing the DME that something was wrong because even when still awake, sometimes I would inhale and it would NOT trigger. They thought I was imagining it and after a LONG battle, I finally went to the DME, tilted my wheelchair back, masked up and relaxed. The owner watched the BIPAP display, listening to my breathing and it FINALLY happened where he could see it. He went pale and as white as a sheet when he realized I had been right all along. That's when they determined that my breathing is so shallow that it can't consistently trip a standard bipap - thus how I ended up on the Trilogy.

The Trilogy is supposedly very sensitive and to the best of my knowledge, there are never times my inhalation does not trigger it. If that ever happens, it happens when I'm sleeping and don't know it. But the DMEs and Respironics RTs all assure me this is not something to worry about because the Trilogy is super sensitive. Just repeating what they told me.

Madalot · Post by **Madalot** » Sat Aug 05, 2017 4:34 am

Madalot wrote:
raisedfist wrote:One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.
Thanks for the suggestion and I'll give it a try starting Saturday. Since my Secondary is already AVAPS-AE, it's really only a couple of changes to set it up. I REALLY need to do an overnight and I'd like that on my current settings so I'll do that Friday, then make the changes for Saturday night.

After having trouble with my pulse ox monitor, I finally got an overnight done, uploaded the data to the software this morning and printed a report. It looks fantastic. The SP02 graph looks pretty regular with no serious dips. Exactly what my previous doctor wanted so...

I may switch to auto-trak tonight (see how my day goes) and give that a whirl. See if it helps with all these darned awakenings!!

raisedfist · Post by **raisedfist** » Sat Aug 05, 2017 8:41 am

Madalot wrote:
Madalot wrote:
raisedfist wrote:One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.
Thanks for the suggestion and I'll give it a try starting Saturday. Since my Secondary is already AVAPS-AE, it's really only a couple of changes to set it up. I REALLY need to do an overnight and I'd like that on my current settings so I'll do that Friday, then make the changes for Saturday night.
After having trouble with my pulse ox monitor, I finally got an overnight done, uploaded the data to the software this morning and printed a report. It looks fantastic. The SP02 graph looks pretty regular with no serious dips. Exactly what my previous doctor wanted so...

I may switch to auto-trak tonight (see how my day goes) and give that a whirl. See if it helps with all these darned awakenings!!

Well that is good news!

Perhaps like you said the frequent awakenings are causing you to not be well rested, which is detrimental to your strength during the day. Hopefully once you resolve the awakenings you will have more energy during the day. Whatever is causing your PTB% to dip is most definitely related to your lack of refreshing sleep.

Madalot · Post by **Madalot** » Sat Aug 05, 2017 8:47 am

raisedfist wrote:
Madalot wrote:
Madalot wrote:
raisedfist wrote:One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.
Thanks for the suggestion and I'll give it a try starting Saturday. Since my Secondary is already AVAPS-AE, it's really only a couple of changes to set it up. I REALLY need to do an overnight and I'd like that on my current settings so I'll do that Friday, then make the changes for Saturday night.
After having trouble with my pulse ox monitor, I finally got an overnight done, uploaded the data to the software this morning and printed a report. It looks fantastic. The SP02 graph looks pretty regular with no serious dips. Exactly what my previous doctor wanted so...

I may switch to auto-trak tonight (see how my day goes) and give that a whirl. See if it helps with all these darned awakenings!!
Well that is good news!

Perhaps like you said the frequent awakenings are causing you to not be well rested, which is detrimental to your strength during the day. Hopefully once you resolve the awakenings you will have more energy during the day. Whatever is causing your PTB% to dip is most definitely related to your lack of refreshing sleep.

Looking at the report more closely, my SP02 levels are FANTASTIC. I can see minor spikes in the PR though and while not 100% positive, I'm hypothesizing they coincide with my awakenings. There are about 6-8 of them last night. I'm wondering IF my PTB is simply dropping (disease related) and sometimes the machine doing the breathing for me is waking me up? Seems as logical an explanation as any since I can see a decrease in PTB on the DirectView reports AND see the PR spikes - 2 + 2 = 4?

Still going to give Auto-Trak a whirl tonight (already set it up on Secondary settings). So, we'll see what happens.

chunkyfrog · Post by **chunkyfrog** » Sat Aug 05, 2017 10:31 am

The stuff you guys know ought to be in a textbook, so providers have access to real facts
--instead of their own half-assed guesses.

raisedfist · Post by **raisedfist** » Sat Aug 05, 2017 1:00 pm

Madalot wrote:
raisedfist wrote:
Madalot wrote:
Madalot wrote:
raisedfist wrote:One thing I would be interested in seeing you do is create a temporary/test prescription and change your flow trigger to the digital auto-trak one with all your other settings the same. Let the auto-trak handle the trigger and cycling. Maybe it will allow better synchrony between you and the machine, and by consequence improve your PTB%. Maybe at current your machine is comfortable while awake, but you are not aware of what it's doing when you're asleep. You would have to be comfortable doing this change of course.
Thanks for the suggestion and I'll give it a try starting Saturday. Since my Secondary is already AVAPS-AE, it's really only a couple of changes to set it up. I REALLY need to do an overnight and I'd like that on my current settings so I'll do that Friday, then make the changes for Saturday night.
After having trouble with my pulse ox monitor, I finally got an overnight done, uploaded the data to the software this morning and printed a report. It looks fantastic. The SP02 graph looks pretty regular with no serious dips. Exactly what my previous doctor wanted so...

I may switch to auto-trak tonight (see how my day goes) and give that a whirl. See if it helps with all these darned awakenings!!
Well that is good news!

Perhaps like you said the frequent awakenings are causing you to not be well rested, which is detrimental to your strength during the day. Hopefully once you resolve the awakenings you will have more energy during the day. Whatever is causing your PTB% to dip is most definitely related to your lack of refreshing sleep.
Looking at the report more closely, my SP02 levels are FANTASTIC. I can see minor spikes in the PR though and while not 100% positive, I'm hypothesizing they coincide with my awakenings. There are about 6-8 of them last night. I'm wondering IF my PTB is simply dropping (disease related) and sometimes the machine doing the breathing for me is waking me up? Seems as logical an explanation as any since I can see a decrease in PTB on the DirectView reports AND see the PR spikes - 2 + 2 = 4?

Still going to give Auto-Trak a whirl tonight (already set it up on Secondary settings). So, we'll see what happens.

Not sure, but I don't think it's the case that disease progression means that sleep fragmentation is not fixable. We just have to figure out how you can make adjustments along the way. Whether that's a more sensitive trigger to counteract your muscle weakness...or something else...we will hopefully find out.

Madalot · Post by **Madalot** » Sat Aug 05, 2017 6:17 pm

raisedfist wrote: Not sure, but I don't think it's the case that disease progression means that sleep fragmentation is not fixable. We just have to figure out how you can make adjustments along the way. Whether that's a more sensitive trigger to counteract your muscle weakness...or something else...we will hopefully find out.

Thank you! Planning to sleep on Secondary settings tonight (Auto-Trak) and will report tomorrow how it goes!!

Madalot · Post by **Madalot** » Sun Aug 06, 2017 5:12 am

Tried Auto-Trak last night. And at the risk of sounding like a certain somebody that complains and can't get anything to work right (sorry) -

Took 5 minutes before I switched back to my regular settings. And here's where I am NOT like "you know who" and will say that it is highly possible I had something set wrong. I tried to check but everything seemed right to me. I was very tired so I gave up.

When I switched to Auto Trak and removed AVAPS-AE settings, I tried to set everything the same as my regular AVAPS settings: Min/Max IPAP, EPAP, RR, TV, etc.

My RR is slow and my rate is set at 7 because any faster forces me to breathe too quickly. On Auto Trak, it was forcing me to breathe VERY quickly and if I tried not to breathe, it started pulsing at me (FOT's??) and pushing breaths. I looked at the display at one point and it had my RR up to 27. I can't breathe that quickly on my own no matter what!

I really tried to stay with it, hoping it would do its thing and settle down but it kept pushing breaths so quickly, pulsing like crazy, that it was becoming very uncomfortable.

So, I am open to suggestions about where I may have goofed in the set up (entirely possible) or any other ideas on that.

Edited to add: I forgot to mention that when the Trilogy was first turned on (twice) on the Secondary settings, it gave a "Low Inspiratory Pressure" alarm, which is weird because that alarm was turned OFF.

raisedfist · Post by **raisedfist** » Sun Aug 06, 2017 9:08 am

I believe auto-trak controls both trigger and cycle so it is possible that it just won't work for you since you're a slow breather. I actually remember when I used the trilogy it made me pretty much hyperventilate as well - my rr was always higher than normal.

With your current flow trigger, do you know how to adjust it to make it slightly more sensitive? Maybe by only adjusting that variable you will have some progress.

Madalot · Post by **Madalot** » Sun Aug 06, 2017 4:07 pm

raisedfist wrote:With your current flow trigger, do you know how to adjust it to make it slightly more sensitive? Maybe by only adjusting that variable you will have some progress.

Sure. I can do that. But refresh my memory (sorry) -- why are we thinking this needs to be done? Are we thinking that I'm not triggering the machine with my inhalations?

raisedfist · Post by **raisedfist** » Sun Aug 06, 2017 4:47 pm

Madalot wrote:
raisedfist wrote:With your current flow trigger, do you know how to adjust it to make it slightly more sensitive? Maybe by only adjusting that variable you will have some progress.
Sure. I can do that. But refresh my memory (sorry) -- why are we thinking this needs to be done? Are we thinking that I'm not triggering the machine with my inhalations?

I would say so - during your sleep your muscle weakness may be causing you PTB% issues, especially in REM sleep. As that progresses, I can only guess that you will need more assistance in triggering a breath. If you haven't changed any settings and you used to get a high % of PTB, I think it is most likely the case.

Madalot · Post by **Madalot** » Sun Aug 06, 2017 4:55 pm

raisedfist wrote:
Madalot wrote:
raisedfist wrote:With your current flow trigger, do you know how to adjust it to make it slightly more sensitive? Maybe by only adjusting that variable you will have some progress.
Sure. I can do that. But refresh my memory (sorry) -- why are we thinking this needs to be done? Are we thinking that I'm not triggering the machine with my inhalations?
I would say so - during your sleep your muscle weakness may be causing you PTB% issues, especially in REM sleep. As that progresses, I can only guess that you will need more assistance in triggering a breath. If you haven't changed any settings and you used to get a high % of PTB, I think it is most likely the case.

Thank you. I can check/increase the sensitivity settings easily. I will give that a try and see what happens.

Trilogy - PTB Down - UPDATE

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Re: Trilogy - PTB Down

Re: Trilogy - PTB Down

Re: Trilogy - PTB Down

Re: Trilogy - PTB Down - UPDATE

Re: Trilogy - PTB Down

Re: Trilogy - PTB Down

Re: Trilogy - PTB Down - UPDATE

Re: Trilogy - PTB Down - UPDATE

Re: Trilogy - PTB Down - UPDATE

Re: Trilogy - PTB Down - UPDATE

Re: Trilogy - PTB Down - UPDATE

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