Trilogy - PTB Down - UPDATE

[Madalot]

Since we've been talking about the Trilogy recently.....

Most of you know me but for those that don't, I use the Trilogy 100 because of a rare neuromuscular disease that causes diaphragm weakness/paralysis at night. It's thought I also have OSA just to make things more fun and more complicated. For a very long time, things have been relatively stable and status quo.

I am in S/T Mode with AVAPS enabled. I have my backup rate at 7 because any faster forces me to breathe faster, while awake, than I like. It makes me feel like I'm going to hyperventilate, even at 8. My average BPM, based on the DirectView reports, is usually in the 11 - 13 range each night. I see my Pulmo once a year.

Typically, the reports from the Trilogy indicated PTB in the 90 - 95% which is excellent. My understanding is that says the machine only has to breathe for me 5 - 10% of the night and the rest of the time, I'm breathing on my own. Because things have been so stable, I don't really check things much anymore.

Before my appointment last December, I checked the report and was very surprised to see it showed my PTB down into the low 70's to mid 80's most nights, rather than in the 90's. My doctor didn't seem very concerned about it, saying that's why I'm on the Trilogy to begin with.

I checked again a couple weeks ago and sure enough, it's still down a lot. Instead of most nights up in the mid to upper 90's, that's rare with it being in the low to mid 70's to 80's pretty consistently.

And am I wrong to think (assume?) that a decrease like that indicates my diaphragm weakness is increasing? Like I said, my doctor wasn't too concerned about it and indicated that we COULD increase the backup rate, which didn't make a lot of sense to me. He did say my backup rate IS lower than they usually have it but also said if I am uncomfortable any higher, it's fine to leave it there.

My weight loss since March of 2015 is around 100 pounds, give or take depending on how good I am. With that much weight gone, I would have thought that my breathing would have gotten better, not showing up worse like this.

I'm just curious if anybody has any thoughts on this.

[LSAT]

I'll be waiting to see if the alphabet boy chimes in on this........Hope you find the answer.

[Pugsy]

I really have no idea except I would think that it would be logical to assume that the disease has progressed at bit and the muscles are weakening.
I don't think you are wrong in that thinking at all.
Bummer for sure. Recently had to come to similar conclusion about somethings going on with me. Nothing as serious as yours though...just highly annoying that it reminds me I am no spring chicken anymore despite what my mind wants to tell me.

[robysue]

Madalot,

I think the question is whether the rare neuromuscular disease is progressing, and whether increasing problems with diaphragm weakness/paralysis at night is an expected part of the disease's progression.

And those are questions for your team of doctors to answer. But my understanding is that your condition is expected to worsen with time, and if that's correct, this could indeed be a sign that it has gotten somewhat worse.

But perhaps an equally important question to consider is this: As the PBT number has decreased, are you waking up feeling even worse than normal and feeling worse than normal during the daytime? In other words, what's the big picture look like rather than one data point coming from the machine look like?

[Madalot]

But perhaps an equally important question to consider is this: As the PBT number has decreased, are you waking up feeling even worse than normal and feeling worse than normal during the daytime? In other words, what's the big picture look like rather than one data point coming from the machine look like?

Valid question. And truth is, I haven't slept well in months. I wake up so much (again) and as to feeling rested? What does that feel like again?? I honestly don't remember the last time I felt well rested.

Sadly, my Pulmo has left and I have my yearly check up in December with a new doctor. Since he's never seen me, can't really ask him. I saw my neuro on Friday, but he was, very uncharacteristically for him, super rushed and seemed determined to find that everything is perfect. He doesn't really deal with my breathing/sleeping issues so pointing it out to him on Friday seemed pointless (I think the clinic was short staffed, thus why he rushed me through).

Despite my Neuro's desire to say everything is great, I feel the disease is progressing, despite the medication that WAS making it better. It's still better than it was at one point, but I can see obvious examples of things worsening, the PTB, awakenings being among them.

Well, thank goodness for the Trilogy, right? At least with it going, it keeps me going. Even 70's is pretty good, all things considered.

Thanks guys.

[LSAT]

I'll be waiting to see if the alphabet boy chimes in on this........Hope you find the answer.

==========

of course i will chime in

keep watching

IDIOT!

[LSAT]

Since we've been talking about the Trilogy recently.....

Most of you know me but for those that don't, I use the Trilogy 100 because of a rare neuromuscular disease that causes diaphragm weakness/paralysis at night. It's thought I also have OSA just to make things more fun and more complicated. For a very long time, things have been relatively stable and status quo.

I am in S/T Mode with AVAPS enabled. I have my backup rate at 7 because any faster forces me to breathe faster, while awake, than I like. It makes me feel like I'm going to hyperventilate, even at 8. My average BPM, based on the DirectView reports, is usually in the 11 - 13 range each night. I see my Pulmo once a year.

Typically, the reports from the Trilogy indicated PTB in the 90 - 95% which is excellent. My understanding is that says the machine only has to breathe for me 5 - 10% of the night and the rest of the time, I'm breathing on my own. Because things have been so stable, I don't really check things much anymore.

Before my appointment last December, I checked the report and was very surprised to see it showed my PTB down into the low 70's to mid 80's most nights, rather than in the 90's. My doctor didn't seem very concerned about it, saying that's why I'm on the Trilogy to begin with.

I checked again a couple weeks ago and sure enough, it's still down a lot. Instead of most nights up in the mid to upper 90's, that's rare with it being in the low to mid 70's to 80's pretty consistently.

And am I wrong to think (assume?) that a decrease like that indicates my diaphragm weakness is increasing? Like I said, my doctor wasn't too concerned about it and indicated that we COULD increase the backup rate, which didn't make a lot of sense to me. He did say my backup rate IS lower than they usually have it but also said if I am uncomfortable any higher, it's fine to leave it there.

My weight loss since March of 2015 is around 100 pounds, give or take depending on how good I am. With that much weight gone, I would have thought that my breathing would have gotten better, not showing up worse like this.

I'm just curious if anybody has any thoughts on this.

======

listen to the doctor not lsat
lsat is just a failed lawyer wannabee who didnt pass the bar

i doubt that wait loss can replace what the disease is doing and has done

From a "brilliant" engineer.

[HoseCrusher]

Congratulations on losing the weight!!! That is awesome.

A question: With your current diet how much bread do you eat?

The reason for the question is that there is some evidence of a relationship between gluten and neuromuscular decline. Occasionally a change in diet results in restoring lost function. It is a bit of a long shot but...

It is not unusual to see an ebb and flow in neuromuscular degradation. People seem to reach a plateau for a while, then go through a change only to reach another plateau. One theory on this is that the body wants to work properly. Disease interferes. The body goes through a period of degradation while the body works to find a work around path to get things back to some form of functionality. While the attack continues the work around hold for awhile, then break down and the cycle continues. IF...

If the cause of the disease can be identified and eliminated, the body heals.

If the body can rebuild faster than it gets torn down, the body heals.

Unfortunately those are big IF's.

[Madalot]

Since we've been talking about the Trilogy recently.....

Most of you know me but for those that don't, I use the Trilogy 100 because of a rare neuromuscular disease that causes diaphragm weakness/paralysis at night. It's thought I also have OSA just to make things more fun and more complicated. For a very long time, things have been relatively stable and status quo.

I am in S/T Mode with AVAPS enabled. I have my backup rate at 7 because any faster forces me to breathe faster, while awake, than I like. It makes me feel like I'm going to hyperventilate, even at 8. My average BPM, based on the DirectView reports, is usually in the 11 - 13 range each night. I see my Pulmo once a year.

Typically, the reports from the Trilogy indicated PTB in the 90 - 95% which is excellent. My understanding is that says the machine only has to breathe for me 5 - 10% of the night and the rest of the time, I'm breathing on my own. Because things have been so stable, I don't really check things much anymore.

Before my appointment last December, I checked the report and was very surprised to see it showed my PTB down into the low 70's to mid 80's most nights, rather than in the 90's. My doctor didn't seem very concerned about it, saying that's why I'm on the Trilogy to begin with.

I checked again a couple weeks ago and sure enough, it's still down a lot. Instead of most nights up in the mid to upper 90's, that's rare with it being in the low to mid 70's to 80's pretty consistently.

And am I wrong to think (assume?) that a decrease like that indicates my diaphragm weakness is increasing? Like I said, my doctor wasn't too concerned about it and indicated that we COULD increase the backup rate, which didn't make a lot of sense to me. He did say my backup rate IS lower than they usually have it but also said if I am uncomfortable any higher, it's fine to leave it there.

My weight loss since March of 2015 is around 100 pounds, give or take depending on how good I am. With that much weight gone, I would have thought that my breathing would have gotten better, not showing up worse like this.

I'm just curious if anybody has any thoughts on this.

======

listen to the doctor not lsat
lsat is just a failed lawyer wannabee who didnt pass the bar

i doubt that wait loss can replace what the disease is doing and has done

I am taking your last statement at face value and agreeing. HOWEVER, weight loss as significant as mine DOES have a bearing on the breathing. With muscle weakness, extra weight makes it harder for the diaphragm. Without the extra fat, it should make it a little easier.

Congratulations on losing the weight!!! That is awesome.

A question: With your current diet how much bread do you eat?

Thank you. The weight loss coincides with the Type 2 Diabetes diagnosis. I have found that bread is my biggest sugar trigger. I'm not saying I don't eat it but I have cut WAY back on what/how much of it I eat. It's weird because I can eat sweets (cakes, cookies, ice cream - limited of course) and it barely does anything to my sugar. But I eat a sub? Oh boy it shoots WAY up, sometimes as high as 300. If I behave myself, I can keep my sugar under 100 before meals and if I eat really smart, around 110 - 120 after meals. It's almost like I'm not diabetic anymore but overdo it on bread (or rice) and whoa....

But the rest of what you said makes sense. I've noticed a few other things as well that would agree with you statement about the ebb and flow and plateaus. That's probably all it is.

[raisedfist]

I think you are most likely correct in your deduction that less patient triggered breaths (PTB) means your diaphragm muscles have further weakened, assuming that you haven't changed any of the S/T AVAPS settings in recent times (which I'm pretty sure you haven't). Further weakening can manifest an increase in central apneas which would cause the backup rate to kick in more often.

You may be well served by making the trigger slightly more sensitive which could potentially increase your PTB. Do you use a manually set flow based trigger, or the Auto-Trak triggering system? If flow trigger, have you ever tried the Auto-Trak (sensitive) mode? I believe this mode automatically controls triggering and cycling. Some people like it and some people don't.

Are you still meeting the same target tidal volume? Perhaps constant awakenings are a protective mechanism due to a further increase in hypoventilation that your machine as-set is not able to address?

Has everything generally been the same in your day to day life? With medications?

[Madalot]

Here are my current settings (copied from DirectView)

Circuit Type Passive
Primary Settings
Mode S/T
AVAPS ON
AVAPS Rate 3 cmH2O/min
Tidal Volume 400 ml
IPAP Max Pressure 23 cmH2O
IPAP Min Pressure 18 cmH2O
EPAP 10 cmH2O
Breath Rate 7 BPM
Inspiratory Time 1.5 seconds
Trigger Type Flow Trigger
Flow Trigger Sensitivity 6 l/min
Flow Cycle Sensitivity 25 %
Rise Time 4
Ramp Length OFF
Alarms
Circuit Disconnect OFF
Apnea OFF
High Vte OFF
Low Minute Ventilation OFF
High Minute Ventilation OFF
Low Respiratory Rate OFF
High Respiratory Rate OFF
Low SpO2 85 %

Based on the reports, my Tidal Volume is averaging above the target, usually around 450 (target is 400).

I have been VERY tired lately, but I also started working 1-2 hours a day from home and find it extremely stressful. I gave notice this morning and am hoping once I stop doing this, things might improve. But the PTB reduction shouldn't have anything to do with the job I wouldn't think.

Overall, I've been feeling very tired and low energy for months. My sleep is badly disrupted, but I know some of that is attributed to stress. Some, but not all. I wake up 5-6 times a night and sometimes can't fall back to sleep (very unusual for me). I've sometimes given up around 4 - 4:30 and gotten up for the day (again, unheard of for me). I can no longer sleep easily until 7:00 - 8:00, struggling to make it through until 6:00.

Just seems like a lot of things are out of whack right now....

[HoseCrusher]

In an effort to help get things back into sync... may I suggest taking a look at this 2017 DeMarini Voodo Insane Bat.

http://www.justbats.com/product/2017-de ... bat--dxvic

Guaranteed to whack with the best of them...

[Madalot]

In an effort to help get things back into sync... may I suggest taking a look at this 2017 DeMarini Voodo Insane Bat.

http://www.justbats.com/product/2017-de ... bat--dxvic

Guaranteed to whack with the best of them...

If only it was that simple!!

[robysue]

I have been VERY tired lately, but I also started working 1-2 hours a day from home and find it extremely stressful. I gave notice this morning and am hoping once I stop doing this, things might improve. But the PTB reduction shouldn't have anything to do with the job I wouldn't think.

I would guess that the PTB reduction is connected to the neuromuscular condition and whether it has recently gotten worse.

But stress can contribute to the overall reduction in quality of sleep. Stress can cause a lot of problems with middle of the night wakes and waking up too early, but finding that you can't get back to sleep. All of which is relevant because you also write:

Overall, I've been feeling very tired and low energy for months. My sleep is badly disrupted, but I know some of that is attributed to stress. Some, but not all. I wake up 5-6 times a night and sometimes can't fall back to sleep (very unusual for me). I've sometimes given up around 4 - 4:30 and gotten up for the day (again, unheard of for me). I can no longer sleep easily until 7:00 - 8:00, struggling to make it through until 6:00.

Just seems like a lot of things are out of whack right now....

I know things are hard for you Madalot. But it may be necessary to tease out how much is stress related, how much is related to the neuromuscular problem, and how much might be able to be addressed by possible tweaking of your machine's settings. As I recall, you've tweaked in the past, but only with substantial feedback from your medical team. And in your case I think that's very wise.

A couple of questions about the wakes where you can't fall back to sleep reasonably quickly: Are you waking up with your mind racing a mile a minute with worries about the stressful things in your life? Do you wind up starting to worry about things after the wake and then find you can't get back to sleep?

As for where to go from here, here are my suggestions:

1) Don't lose sight of the very positive side of the weight loss. While it might not have helped your sleep enough for you to tell, it's got to make things much easier for you during the daytime. Keep up the good work there and remind yourself that keeping the Type 2 diabetes under control might not make you sleep any better, but it surely makes things easier during the daytime.

2) Gather some data if you think you are up to keeping a daily log of some sort. I'd suggest tracking the following things:

• Daytime stress level---Keep it short and simple. Maybe a 0-5 scale where 0 = no stress and 5=stressed out all day long. I would NOT keep notes about what stressed you out, however, since that can induce a lot of stress all by itself.
• Bedtime, wake-up time, number of wakes you actually remember. Don't try to analyze what woke you up or when the wakes occurred. Do make a note if you had trouble getting back to sleep after one or more of the wakes, but don't try to analyze why it happened in the log. It's enough to just say, "Had trouble getting back to sleep on 2 of the wakes"
• A note how you feel when you decide to get up; keep it a simple 0-5 scale if you want to. Also make a note if you are getting up earlier than you want because you just can't get back to sleep. Again, there's no need to try to analyze why you can't get back to sleep.

If the new, bothersome wakes where you can't get back to sleep are tightly correlated with stress, that should show up within a week or two of keeping the log.

3) Finally you write:

Sadly, my Pulmo has left and I have my yearly check up in December with a new doctor. Since he's never seen me, can't really ask him. I saw my neuro on Friday, but he was, very uncharacteristically for him, super rushed and seemed determined to find that everything is perfect. He doesn't really deal with my breathing/sleeping issues so pointing it out to him on Friday seemed pointless (I think the clinic was short staffed, thus why he rushed me through).

Despite my Neuro's desire to say everything is great, I feel the disease is progressing, despite the medication that WAS making it better. It's still better than it was at one point, but I can see obvious examples of things worsening, the PTB, awakenings being among them.

I think you may need to contact both doctor's offices. Yes it's difficult, but the fact is they know far more about your neuromuscular condition that we do, and it is reasonble to ask for a phone call back, at least from a nurse.

For the neurologoist, I would keep the questions directly tied to the neuromuscular condition and its connections to the diaphragm weakness that you have. It's important to ask him/her the question, "Is the diaphragm weakness expected to get worse with time? If so, how will I know that it's happening?" It's also critical for you to have a conversation with the neuro about the fact that medicine no longer seems to be helping. Perhaps a dosage adjustment needs to be made. Perhaps an alternate medication should be tried. Perhaps nothing can be done. But the doctor needs to be informed that the medicine doesn't seem to be working anymore.

As for the new Pulmologist: Who is scheduled to see you in Dec? The new doctor? or a PA or nurse practitioner? Again, it seems to me that it is perfectly reasonable to give the new doc's office a call to report the on-going problems, particularly given your long medical history and the fact that you had been treated for several years by the Pulmo that left. It is worth trying to speak to a PA or nurse on a call back just to find out whether you should push to be seen earlier than December: Five months is a long time to wait when you are having real problems. At a minimum, maybe you could ask to be put on a cancelation list ....

[raisedfist]

Here are my current settings (copied from DirectView)

Circuit Type Passive
Primary Settings
Mode S/T
AVAPS ON
AVAPS Rate 3 cmH2O/min
Tidal Volume 400 ml
IPAP Max Pressure 23 cmH2O
IPAP Min Pressure 18 cmH2O
EPAP 10 cmH2O
Breath Rate 7 BPM
Inspiratory Time 1.5 seconds
Trigger Type Flow Trigger
Flow Trigger Sensitivity 6 l/min
Flow Cycle Sensitivity 25 %
Rise Time 4
Ramp Length OFF
Alarms
Circuit Disconnect OFF
Apnea OFF
High Vte OFF
Low Minute Ventilation OFF
High Minute Ventilation OFF
Low Respiratory Rate OFF
High Respiratory Rate OFF
Low SpO2 85 %

Based on the reports, my Tidal Volume is averaging above the target, usually around 450 (target is 400).

I have been VERY tired lately, but I also started working 1-2 hours a day from home and find it extremely stressful. I gave notice this morning and am hoping once I stop doing this, things might improve. But the PTB reduction shouldn't have anything to do with the job I wouldn't think.

Overall, I've been feeling very tired and low energy for months. My sleep is badly disrupted, but I know some of that is attributed to stress. Some, but not all. I wake up 5-6 times a night and sometimes can't fall back to sleep (very unusual for me). I've sometimes given up around 4 - 4:30 and gotten up for the day (again, unheard of for me). I can no longer sleep easily until 7:00 - 8:00, struggling to make it through until 6:00.

Just seems like a lot of things are out of whack right now....

1) Am I correct that you have not changed those settings in quite some time?
2) While awake, do you ever notice times when you actively try to make an inhalation, but the machine doesn't seem to respond?
3) How and when was the flow trigger and sensitivity set up? Have you tried the digital auto-trak (auto-trak sensitive) option?
4) Regarding your EPAP of 10, during a sleep study did you have documented obstructive apneas? As far as I recall, usually in NMD the EPAP is minimized as much as possible to reduce the work of breathing.

Your settings seem rather tight (the IPAP min and max) and aggressive at the same time (an AVAPS rate of 3.0). Do you find the IPAP min of 18cmh2o comfortable? Or, do you have a hard time falling asleep because of it?

Lastly, for now, it doesn't really seem that your physicians are exactly in your corner helping you out. Have you considered seeking out a new doctor/rt? I know it's a PITA but clearly they have a different view of "things look great" than you do and it won't ever be reconciled most likely.

Edit: To add, it may be possible that your increased activity during the day causes an increase in the fatigue of your diaphragm muscles? Maybe by the time you lay down you are even more pooped, so they are at a higher disadvantage by the time you fall asleep and unfortunately hit REM sleep. That's probably not correct, but it would be an interesting connection - and something to think about should you cease said activities.