Trilogy - PTB Down - UPDATE

[Madalot]

To robysue & raisedfist -

You have both given me a lot of information, asked a lot of excellent questions, to which I plan to respond.

Just not today. I've hit that point in the day where I am just about worthless. Especially in the summer (which my Neuro confirmed is bad for people like me) I hit a wall around 3pm and functioning is even more difficult. And I am there right now. Put a fork in me - I am DONE.

So, I will try to respond to all of it tomorrow (around working of course).

Thank you so much. I truly appreciate the help & input.

[Lucyhere]

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.

=

nope

the voice to text ap was written by some hack programmer

BS

.

[Lucyhere]

.
Madalot -- losing 100 pounds is miraculous! Big congrats to you! I hope your other issues get solved quickly!

.

[Lucyhere]

you libtards are all BS and are afraid of logic and facts

,



He says OVER, AND OVER, AND OVER, AND OVER, AND OVER... ad nauseam.

.

[lonely]

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

Now that is the epitome of a lonely lifestyle when you worry about things you have no control over. Not that you have to wait but you feel you do. I guess it passes the day for you eh?

[Madalot]

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:

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.

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 ....

I've given it a lot of thought and my inability to fall back to sleep IS stress related most of the time. Yes, I wake up and my mind starts going - usually about work. Once I've stopped working, at least on this stressful contract, I'm hoping that aspect will resolve.

Yes, the weight loss has been super beneficial to me. Carrying around 100 less pounds has made me a little more mobile. I still have the disease and associated weakness and fatigue, but I get around a little better, a little longer. So I'm definitely not discounting that. As a matter of fact, I still weigh in EVERY day and although I AM up about 5 pounds, I have a limit to how much I allow myself to gain and when I get too close, I get back on my good eating habits immediately and drop back down. Being VERY careful on that.

Doctors - I am thinking about calling my Neuro's office and "clearing up" a few things. I've noticed in the last few years how things we talk about end up being put into my record inaccurately. Last year, I told them I bought a small, manual vacuum and was able to use it, FROM MY WHEELCHAIR, to get the cat hair off an area rug. Friday, the student read my record and asked "Are you still able to vacuum?" I CANNOT use a vacuum - I tried and it doesn't support me enough to do it. There's a huge difference between what I do and real vacuuming. That's just one example of how what I tell them gets misconstrued in the records. Plus, I want to make it clear that despite the rushed appointment and my lack of complaining - things are worsening.

My Pulmo - he told me in December he was leaving and told me who was taking ME as a patient. There are other pulmos but in my case, he assigned me to the one he thought would do the best. And yes, I may give him a call. The problem with trying to get in sooner is the distance, I don't drive anymore (my eyes are badly affected) and my husband is SO busy. But we'll see how that goes....

[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....

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.

You are correct that the settings have NOT been changed in a long time. The last change was a few years ago after my overnight pulse ox and my Pulmo didn't like how chaotic the oxygen line was. It was above 90, but bounced a lot and he wanted it more even. He gradually upped my minimum IPAP from 15 to 18, then he also bumped up my EPAP to 10. Thus the tight settings you mention. My DirectView reports indicate my AVERAGE IPAP/EPAP number at 18/10 most nights.

IPAP of 18 was HARD at first, but I've adapted to it and now, I barely notice it. But I agree that the setting of 18-23 is tight, but it doesn't seem like I really need it any higher than that. And after doing it, my oxygen line was a lot more stable.

I really should do another overnight and see how things are going. I'll put that on my "to do" list.

One thing that has changed since last year is I drastically changed my sleeping habits. I used to stay up until 11:00 - 12:00 and sleep until 7:00 - 8:00. I started getting up at 6:00 with my husband during the week and trying to to go sleep by 10:00. I've definitely gotten into that habit and I am falling asleep now by 10:00. But my inability to sleep past 5:00 or 6:00 is still abnormal. I found that I felt my best with 9-10 hours sleep (sleep helps a lot with the weakness). The 10:00 - 5:00/6:00 is only giving me 7-8 and that's another aspect of this. I NEED 9-10 and am only able to get around 8 (sometimes less).

[raisedfist]

When is the last time that you had an in-lab sleep study done? It might be worth undergoing a night in the lab with your current settings to document that adequate ventilation, oxygenation and muscle rest are (still) occurring. I realize that in-lab is a pain in the butt for everyone, let alone someone with NMD and who probably experiences physical pain positionally.

In the lab they can monitor your carbon dioxide levels to make sure they are well controlled. They can also document that adequate muscle rest is occurring. They can also make sure that the patient and ventilator are working in synchrony - especially while asleep. At home you can only really monitor oxygen saturation which is not a good measure of ventilation.

It sounds like with your frequent arousals and not waking up feeling refreshed, something more than just "my disease is progressing" is occurring. I don't think it necessarily has to follow that disease progression leads to increased sleep fragmentation or waking up feeling not refreshed. It may be inevitable though that you start getting more and more tired earlier in the day as time goes on (ex: a good night of sleep lets you be active for 12 hours, then the next year 11, etc).

[Madalot]

When is the last time that you had an in-lab sleep study done? It might be worth undergoing a night in the lab with your current settings to document that adequate ventilation, oxygenation and muscle rest are (still) occurring. I realize that in-lab is a pain in the butt for everyone, let alone someone with NMD and who probably experiences physical pain positionally.

In the lab they can monitor your carbon dioxide levels to make sure they are well controlled. They can also document that adequate muscle rest is occurring. They can also make sure that the patient and ventilator are working in synchrony - especially while asleep. At home you can only really monitor oxygen saturation which is not a good measure of ventilation.

It sounds like with your frequent arousals and not waking up feeling refreshed, something more than just "my disease is progressing" is occurring. I don't think it necessarily has to follow that disease progression leads to increased sleep fragmentation or waking up feeling not refreshed. It may be inevitable though that you start getting more and more tired earlier in the day as time goes on (ex: a good night of sleep lets you be active for 12 hours, then the next year 11, etc).

My last sleep study was many years ago and to be honest, it ticked me off in a major way. I wasn't sleeping well, waking up a LOT and the lab didn't have, and refused to get, an actual Trilogy. They did the study on another piece of equipment that could do either ASV or AVAPS (I want to say it was an Omni???). They mimicked my Trilogy settings and said everything was PERFECT.

After my last Pulmo upped my Min IPAP/EPAP, things DID settle down and I was sleeping pretty well. Things were going fairly well for a long time.

Should my new Pulmo, at some point, decide on a new study, it would be at a different University lab (my doctor has changed). It's something to think about for sure.

I just went back through DirectView to see when the PTB seemed to go down, hoping it would coincide with my working (stress). Sadly, it started before I began working so that probably isn't what's causing that. But...

I think my first course of action is try to take Robysue's suggestion about logging these things at least until I stop working. I will probably continue the job for another 4-6 weeks (out of a moral obligation). After that stress is gone, we'll see if my overall sleep improves.

I am also going to do another overnight pulse ox just to make sure we're keeping my oxygen levels up there and that's not an issue. I haven't tested in several months so I'm due.

Thanks for all the input and suggestions! I know my situation isn't ordinary for the forum and outside the realm of many people's knowledge and understanding, but I always get GREAT input and I appreciate it. I truly do.

[EdNerd]

Madalot: I have no insights on your condition or your machine, but some other thoughts that may or may not fit. Feel free to ignore them if they're too far out there.

I am personally involved with someone who has fibromyalgia and sleep issues. While they only use a CPAP (and the doctor said it's only a "lifestyle" decision, not a critical need - I'm jealous!!), the sleep problems are there. Sometimes so tired that activity is near impossible, yet unable to actually fall asleep or stay asleep. Waking up at odd times, mind too active at times - other times can't seem to hold on to a thought. Don't know how closely that mimics your situation.

Doing a lot of reading on both sleep and fibro. One point that jumped out is that a lot of doctors simply treat the pain and the sleep, and not the underlying cause of why the patient feels like this. Fibro is not a muscle pain issue - it's a nerve issue, possibly in the spinal cord or somewhere in the brain, that regulates how the body processes pain. And these are mechanisms that react to things like stress, food allergies, and lack of sleep. Talk about a vicious cycle!! Discomfort causes less sleep, which throws the appetite and stress responses out of whack, which causes more sleep disturbances, and so on .... And it's amazing how much depends on decent sleep.

Is it possible that other factors are disturbing your sleep, and affecting your NMD?? Rather than your NMD progressing and causing sleep issues? Since you lost all that weight (*huge* congratulations!!), how has that affected how you position yourself while you sleep, sit, and move? I'm assuming you are watching your diet to ensure proper vitamins and nutrition, not just fewer calories? Have you started any new meds? Have you had any current meds re-evaluated for your new body style? At 100 pounds less, you really are a totally different person.

Anyways - just some thoughts. I hope you find some answers - sometimes they are hard to dig out! Do not let the doctors off the hook!!

Ed

PS - You said you are sticking with this contract for a few more weeks due to "moral obligations". That's understandable and commendable - but it may not be the best thing for you. Your pulmo dr left you and several other patients - a moral obligation if ever there was one - because there was a higher obligation (giving him the benefit of the doubt here). How good are you going to be on this contract in three weeks if this continues? Can you continue to give the measure of service you feel obligated to, if this doesn't ease up because of the service you feel you must render? Are there others you can't serve because of all of this? I'm not trying to put any kind of guilt trip on you - but sometimes the kindest and most selfless people have a hard time looking in the mirror. If this contract truly is a higher moral obligation - and only you know that - then I hope you can see it through to the end. But please do not overlook the others who love you, and especially yourself.

[raisedfist]

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.

[Madalot]

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.

[ajack]

are you up for another sleep titration to tweak your settings? that would be the best outcome
I can understand you need to sleep, I'd use the auto titration feature for a few nights over a week or 2 so it doesn't stop you getting some rest in between. you never konw you may get use to the FOT, most resmed cpap users do. Or you may then set it up in avaps mode using the new data, as per the results.
it seems it should do the job
http://www.medtechnica.co.il/files/1402301644l44Ui.pdf

does it have a sd card,...It's ok I got to the part where it shows a sd card.. can you put a sleepyhead chart up?

Is 4 is a slow rise rate, did the doctor set this ? I know 4 is slow on the philips asv

[Madalot]

are you up for another sleep titration to tweak your settings? that would be the best outcome
I can understand you need to sleep, I'd use the auto titration feature for a few nights over a week or 2 so it doesn't stop you getting some rest in between. you never konw you may get use to the FOT, most resmed cpap users do. Or you may then set it up in avaps mode using the new data, as per the results.
it seems it should do the job
http://www.medtechnica.co.il/files/1402301644l44Ui.pdf

does it have a sd card,...It's ok I got to the part where it shows a sd card.. can you put a sleepyhead chart up?

Is 4 is a slow rise rate, did the doctor set this ? I know 4 is slow on the philips asv

The Trilogy is a different animal all together. There is no auto titration feature, per se. Also, the data it collects and stores is NOT sleep related but respiratory related. Some of it is the same, but most of what the Trilogy provides is not what you are looking for on a sleep apnea patient. Also, the Trilogy is not compatible with Sleepyhead since it doesn't provide the data Sleepyhead wants and uses.

I gave AVAPS-AE a good shot, using it for several weeks before giving up and going back to regular AVAPS. At this juncture, I don't feel I'm having any difficulty with the set EPAP at 10.

I chose the Rise Time - seemed to be the best for me.

Getting another sleep study is problematic on so many fronts. Not impossible and may have to happen at some point, but I'm not sure we're there yet. Still a few unknowns that once identified, might help/solve some of these issues.

Edited to add: I just viewed the .pdf provided and it DOES call AVAPS-AE an auto titration mode. I stand corrected on that. I'm going to need to research this a little more because my understanding of AVAPS-AE was all it did was automatically adjust the EPAP. I admit I'm slightly confused.

[ajack]

I'm well out of my depth, I'm use to the paddle pool. and I know you have a lot more experience with this stuff. If you are comfortable doing your own adjustment and, if it's done in stages. With a good grasp of why you are changing a setting , it should be ok.

I wouldn't attempt to advise you in specifics, nor would I take adjustment advice from a forum without fully understanding it, in your position. but as frustrating as it would be for another sleep study and a month or two to get use to the new settings. It may give you the best outcome.