ASV One Week Trial - Continuing Updates

This DME gave me an AVAPS machine a while back. The purpose was to see if I slept any better with less awakenings and/or felt better during the day. It didn't do anything differently (better or worse) than the Trilogy. Since I already had the Trilogy, we stuck with that.

I have emailed my doctor basically outlining how either machine seems to be okay on any given night, but how research into Respironics protocols (that's how I phrased it) indicated AVAPS or Bipap S/T was appropriate for neuromuscular disease, NOT ASV.

My bottom line to her was that at this point, either machine will treat the respiratory issues okay, so it's the lesser of two evils when it comes to sleep/rest and feeling refreshed. Neither of them gives me that. But reading the info posted by -SWS from Respironics, it seems like chosing the ASV is NOT the smartest decision, especially if it doesn't provide me with what I want, which is to sleep well enough that I FEEL more rested during the day.

-SWS -- I am very much hearing what you are saying here and have relayed your information to my husband. This is weighing heavy on him as well and right now, he agrees that sticking with the Trilogy makes the most sense.

I wish we could find a way to make me feel more rested during the day. As another poster wrote -- I am so sick and tired of feeling sick and tired. All the time, every day, day in and day out.

I know this is all so hard. I have no technical knowledge, but i do have a lot of this:

((( hugs )))

snuginarug wrote:I know this is all so hard. I have no technical knowledge, but i do have a lot of this:

((( hugs )))

I'll take 'em! Thank you. They help more than you know.

Well, for those that were worried (or disgusted) when I suggested going WITHOUT a machine, you can rest easy. I went to bed late last night (after 1am - my current book is so good and the Kindle has made it possible for me to read). I slept fitfully from 1 - 3 waking up a lot and not sleeping well at all. I masked up at 3 and slept much better from then until I had to get up at 6:45.

What's really, really weird is I had this dream (vision) that my husband woke up and whispered to me "you need your mask...put it on" but he swears he never said anything to me. Very weird. Perhaps I was feeling guilty for even trying to go without.

Despite the daytime fatigue, going without is a bad option, but we already knew that. So, we're back to where we started and that's making a final decision -- ASV or Vent. And -SWS's insight and input has pushed me towards the vent, IF we can work out a few things financially with the DME.

Maybe that's the other side of all the people taking their masks off in their sleep. Karma was making you want to put yours on in your sleep.

Huh.. I remember you talking about asv not being for you when I was first getting Diagnosed.. didn't realize you actually tried an asv. I thought you had mentioned your Dr said it wouldn't do for you. Glad you at least tried it to get to that conclusion. Yes, I know this is an old thread. Hope all is well Maddie!

I know this is hard to believe, but I completely forgot about this ASV Trial! It was just a little over a year ago and it totally slipped my mind.

Right now, I think I'm about as good as it is going to get with the Trilogy settings & my current physical situation. I have good days and bad days and I take them as they come. I have found that I still feel more energy (on my good days) since increasing my Minimum IPAP to 18 so I am grateful. What's ironic, though, is that I think the increased energy causes me to overdo, thus being a factor in the bad days. Doing more causes more fatigue and pain and that affects my sleep.

Catch 22. Damned if you do, damned if you don't.

I still try to NOT mask up and lay down until I'm already falling asleep watching TV or reading. And doing that frequently results in less than optimum hours of sleep, which we all know is a factor in my daytime sleepiness.

For now - I'm good. Sleeping fairly well most of the time and enjoying those good, more energetic days and being grateful for them.

Good news!

Madalot: As others have alluded before, your Trilogy can probably do BiLevel for Hypo-ventilation. In other words, you can have your cake and eat it too Check out this recent post below, then PM John (or SWS) if you have questions specific to the settings for the Trilogy. Best wishes, I'm sure you'll get it sorted out. SNO

viewtopic.php?f=1&t=86930&p=792886&hili ... el#p794795

Sir NoddinOff wrote:Madalot: As others have alluded before, your Trilogy can probably do BiLevel for Hypo-ventilation. In other words, you can have your cake and eat it too Check out this recent post below, then PM John (or SWS) if you have questions specific to the settings for the Trilogy. Best wishes, I'm sure you'll get it sorted out. SNO

viewtopic.php?f=1&t=86930&p=792886&hili ... el#p794795

I believe (and experts please correct me if I'm wrong) that my current settings technically ARE BiLevel. The mode doesn't say BiLevel, but I am thinking most of the Trilogy modes ARE BiLevel, just with more bells & whistles than the standard BiLevel machine.

My Mode is S/T (Spontaneous/Timed) with AVAPS (Average Volume Assured Pressure Support) enabled. I believe AVAPS can be used in other modes as well, but don't hold me to that because I haven't tried all modes.