AVAPS-AE on MY Trilogy - Ongoing

Another couple nights down. For some reason, I feel horrible today, worse than I've felt in MONTHS. I think I slept okay, aside from pain & discomfort being a bit more severe than usual. I feel like I didn't sleep at all. Even coffee isn't doing much for me this morning. I haven't been doing it recently, but I suspect a long nap is in order today.

Data looks typical. PTB around 91%. I did make myself sleep supine a bit more (that's the idea of using AE). No doubt leaks increase supine. I am using a new mask and leaks are a bit better, but still more prominent when supine.

EPAP still isn't hitting anywhere near 12 (current max setting) so I wonder if that's needed at this point.

Per ~SWS's suggestion, did an overnight pulse ox. No problems there (lowest 02 was 94). The 02 line wasn't quite as straight as my doc likes, but I'll take it for now.

At this point, my plan is to give AE another night or so at current settings, then go back to regular AVAPS for a few nights. Then I'll do a side-by-side comparison of the data.

EPAP higher than 9cm presents a potential discomfort. Additionally FOT presents a potential discomfort. While SpO2 and DirectView look good, there is no objective measurement of sleep quality in your present experiment---only a subjective assessment. Needless to say, I think your subjective assessment is important.

Good luck with this stage of analysis/comparison, Madalot. Please continue to keep us in the loop. I'm intently following your progress, and I'm sure others are as well.

-SWS wrote: . . . there is no objective measurement of sleep quality in your present experiment---only a subjective assessment. Needless to say, I think your subjective assessment is important. . . .

Would I be correct to restate your point this way, -SWS?:

My words: "Since Madalot has no sleep-study data to show how her sleep is being affected by the two modes used in this experiment, she can only go by how rested she feels to make her judgment call on how her sleep is being affected. Only a titration sleep test would provide actual objective sleep data, not just breathing data, for comparing the effect of the two modes on the quality of her sleep, not just on the quality of her breathing while asleep."

Am I even close? Or way off the mark?

I think that's a nice expansion with details, Jeff. Madalot's following-day symptoms are not great. That's a pattern she needs to keep a close eye on---for lack of important PSG measures.

I would also add that the oximeter may be a confounder here, if it adds enough discomfort to deteriorate her sleep. If so, the plethora of PSG equipment might similarly degrade Madalot's sleep.

I used the oximeter Sunday night. I also used a new mask / headgear Sunday night. I slept okay Sunday and felt like normal yesterday. I did not use the oximeter last night.

All I know is I woke up in pain and turned to my back. I slept on my back for a couple hours, but woke up in horrible pain which is unusual when I'm on my back. I attempted to turn over to my other side, but couldn't get there and finally got frustrated and sat completely up and laid back down on my bad side once again. I was also having the most bizarre and vivid dreams I've had in a very long time. I can still remember most aspects of the dreams even now.

When it was time to get up this morning, all I could think was "please let me sleep longer!" But I needed to get up.

Other than that, there was nothing unusual about last night. The way I feel today may have nothing to do with sleep. It's possible I'm coming down with a virus or something. But, I don't feel like I'm getting sick. I feel like I didn't sleep at all last night.

Another night on AE with max EPAP at 12. Whatever happened Monday night to make me feel so badly yesterday was probably a fluke. Last night was typical and today is typical.

I have printed out Daily Details for 9/1 on and marked each report with the max EPAP for that night.

Now, I am going to go back to regular AVAPS for 3-4 nights, doing reports daily for comparison.

Oh -- I was able to retrieve some of the data from my old Trilogy. The PTB for the week prior to getting this loaner was typically 94% - 96% so a bit down from my norm, but had not taken the dips I'm seeing now. Still no way to be sure if it was ME having an issue or the loaner or a combination of both.

So unless something radical occurs, I won't post again for 3-4 days, once I get the comparison data.

Madalot wrote: So unless something radical occurs, I won't post again for 3-4 days, once I get the comparison data.

I'll be out of touch with the message board until Tuesday of next week. But I look forward to finding out how your side-by-side comparison shaped up after I return.

Good luck!

Okay -- I have 5 nights down using regular AVAPS. I'm sure the first question is whether I feel better on it or AVAPS-AE. My initial response would probably be "regular AVAPS" but I honestly cannot be that sure. There are SO many variables in play that affect how I feel on any given day.

For those in the know, here is the Dropbox link to the Trilogy data. This is all the data from 8/31/13 - 9/15/13.

https://www.dropbox.com/sh/pnm43shsca1ggy8/Rxj81YMaji

How have things been going with your AVAPS -vs- AVAPS-AE comparison?

-SWS wrote:How have things been going with your AVAPS -vs- AVAPS-AE comparison?

I haven't been doing much in the last week or so other than thinking about the differences. I've been back on basic AVAPS about 12 nights now. I feel I sleep better on this, but FEEL better the next day on AVAPS-AE. I feel more fatigued and drained now and unable to function as well during the day. I feel I'm more apt to fall asleep when I sit down to read or watch television.

When I first switched back to basic AVAPS, I slept hard and soundly the first couple nights, not waking up enough to want to move. After a couple nights, however, pain has woken me, forcing me to move and thus back to the supine issue. I have finally devised a way to get turned over to my left side (requires specific positioning of my left foot, hooked around the mattress and used for leverage). Unfortunately, I can only lay that way for 30-60 minutes before pain forces me to move again.

One thought I've had and just haven't acted upon is since the average EPAP on AVAPS-AE is 9.5, perhaps a higher set EPAP on basic AVAPS might be in order. I would need to bump it up to 10. I had tried that a while back and had trouble tolerating it, but it might be worth giving it another go at this point.

One thing that I have done in the last couple months is break the cycle of going to bed late, only getting 5-6 hours sleep, then napping 1-2 hours during the day. I am NOT staying up very late much and aside from one day last week, haven't laid down to take a nap during the day.

I guess I'm just not sure whether AE or basic AVAPS is better overall. And I'm not sure what my next step should be, so I haven't done anything.

Updated files have been put in Dropbox.

Hi Maddie,
I see you're still testing limits as usual.

One of the reasons that your loaner machine has such wide pressure ranges is so that it can also function as a true ventilation machine for someone who has no respiratory drive. It takes much more pressure to actually force a full ventilation, as opposed to assisting and enhancing pressure for cpap applications.

I haven't read this entire thread, but I did want to touch base with you. There are volume based ventilators as well as pressure ventilators. I honestly don't know what would be best for you at this stage of your disease, but I am pleased that you are stretching the envelope with medical supervision.

I wish you well,
Jamis

jamiswolf wrote:Hi Maddie,
I see you're still testing limits as usual.

Have to find some way to keep life interesting, don't I? lol

jamiswolf wrote:One of the reasons that your loaner machine has such wide pressure ranges is so that it can also function as a true ventilation machine for someone who has no respiratory drive. It takes much more pressure to actually force a full ventilation, as opposed to assisting and enhancing pressure for cpap applications.

I haven't read this entire thread, but I did want to touch base with you. There are volume based ventilators as well as pressure ventilators. I honestly don't know what would be best for you at this stage of your disease, but I am pleased that you are stretching the envelope with medical supervision.

I've used a Trilogy 100 since February 2010. Only thing different about this loaner is updated software/firmware, thus the new AVAPS-AE mode. When I get *MY* Trilogy back next month, it will be more up-to-date than this one.

I've often wondered where I would be had my DME not pushed this machine. Would I have ended up on ASV and how long would that have worked (if it worked well to start with)? Would someone have figured out "AVAPS" and put me on one of those machines? These are things I frequently wonder....

I also know that my condition is progressive and no matter what we do or how well it works, at some point it will stop being as effective. I have to be ready and willing to change in every aspect of my life, sometimes over weeks or months, sometimes almost overnight something stops working for me.

The AVAPS-AE seemed to be the solution to the need to sleep supine because of pain (I slathered Icy/Hot all over my left thigh this morning after sleeping on it for only an hour or so early this morning -- yousa). But I am thoroughly confused by the data indicating it never got my EPAP much above 10, despite my last sleep study saying I needed it at 12 to sleep supine.

I've also figured out that if all things are equal (meaning sleep time/quality seems about the same), weather plays a key role in how I feel. I tend to feel better on sunny days and more tired and worn out on cloudy ones. Today is wrecking havoc because it's doing both!

I've let myself get into a holding pattern in the last few weeks, having gone back to regular AVAPS and let the AVAPS-AE testing slide. Part of that is I am not sure *IF* I was getting much out of AE other than feeling like I felt a more rested during the day, despite sleeping better on regular AVAPS.

To my novice and untrained eye, the data doesn't seem much different in the two modes. Without anything glaringly obvious to go on, I don't know what, if anything, to do.

Pain is an ongoing issue. Some nights I remain on my side all night. Other nights I have to sleep on my back to sleep at all.

I still struggle with needing to force myself to keep active because once I sit down in my recliner, I'm dozing off. I try to keep busy playing Words or reading, but I find myself falling asleep anyway.

I have a checkup with my Pulmonologist on the 15th and get my Trilogy back, updated, on the 17th. The loaner Trilogy is due for it's two-year maintenance in January, meaning it's not all that up to date. My Trilogy *may* have newer/better features.

It seems reasonable to just wait until I have my Trilogy and try AVAPS-AE again, hoping that my Trilogy might have some feature that will make it more obvious whether AE is for me.

Any thoughts?

Hi Maddie,
Going back two posts to your question regarding EPAP pressures. I'm a little rusty thinking about all this stuff. You were surprised that your machine was only showing 10cm, but your study recommended 12cm. Whats your IPAP running...just to give me more info.

Next post you commented that you sleep better with avaps, yet you tend to feel more well rested on the ae setting. How are you determining that you sleep better with plain avaps? By machine data?

I am not advocating to anyone that they ignore machine data. But much info, and possibly even better info, can be garnered from your pure subjective response to how you feel. Before I began cpap, I had the usual symptoms...but also I never remembered any dreams. My Mom sort of trained us (me and 3 siblings) to recall our dreams and we would recount them over breakfast. So if I don't remember any dreams, that's a pretty good hint that I'm not having any. Meaning little or no REM sleep.

Now that my CPAP treatment is going well, I'm back to recalling complex and delightful dreams. So that, and the disappearance of my other bothersome symptoms, tells me that I shouldn't change anything...so I don't. I don't distrust machine data, it's just not the whole picture.

I wanted to tell you about another recent experience I had. I'm always trying to lose weight and I recently tried something I hadn't done in years. I did a 4 day water fast. The purpose was to re-adjust my response and relationship with food. I know many people...some in my family, who get panicky if they miss one meal or are even late for a meal. As you fast, hunger subsides and is replaced with a not unpleasant feeling of emptiness.

The biggest thing I felt though, was a tremendous feeling of energy. I cleaned house, cleaned and organized my tools, did the laundry and generally felt great. Once back on my normal diet, I returned to my normal lower energy level. So now I'm experimenting with ways to keep that light energetic feeling going. I'm pretty sure carbs have much to do with it...and red meat too.

I am not suggesting for anyone to fast, but to look at their diet to see what foods might be eliminated to enhance energy and mental clarity. All things don't lead back to sleep apnea is my point here.

So I guess that's my rap for the day.

Take care,
J