Trilogy AVAPS-AE-Ongoing

[Madalot]

As much as I hate to do it, survival (figuratively speaking) is going to depend on trying AVAPS-AE again.

Pain is forcing me on my back for a large part of the night. I do NOT blame my husband, but last night he shoved my pillow twice and tugged the covers off me 3-4 times to stop the noise I was making while on my back (this all happened within 30 minutes or so). At 2:30, I debated about just getting up so HE could get some sleep, but I was SO tired, plus he doesn't like me up and moving around at night. I thought about switching to AVAPS-AE settings, figuring those pesky FOT's would only disturb me and not him. We've changed my Primary settings some and I wasn't alert enough to try to figure out what to change on the AE settings to make it compatible. I've never been very good at Pressure Support settings. While in theory I understand them, I have trouble figuring out how to set them.

But something has got to give. My husband is incredibly busy and needs HIS rest. I certainly could use more rest myself, but I can get by better than he can since I am disabled and don't work. Since my son has left two weeks ago (joined the Army), *I* am doing much more around the house and if I'm not getting my rest, it's tough. I've been having some cognitive issues in the last few months, probably from not sleeping well due to pain. I am sometimes amazed at the stupid mistakes I make on paperwork. It's scary.

Anybody want to take a crack at revisiting the AE settings based on my Primary? If anyone chimes in with "Sure!" I'll post my current Primary settings & then what the values are for the AE settings.

If nobody pops in with interest, I'll "wing it" --

[photonic]

Hate to say it, but would separate sleeping rooms be a wise choice in this situation?

[Madalot]

Hate to say it, but would separate sleeping rooms be a wise choice in this situation?

I plan on talking to my husband this afternoon/evening. I am going to bring this up as a possible solution, but I know how he (and me too) feels about this. We will only do this as a last resort. And knowing him the way I do, he'll say it isn't bothering him. But after 2 pillow shoves and about 4 cover pulls, it DOES bother him. But he'll deny it if acknowledging it means separate bedrooms.

[Madalot]

I have looked at the AE settings, fiddled with them as much as my knowledge and understanding will allow, and set the machine to use AE tonight.

Something has got to give. Hubby looked like death walking when he came in a while ago. He's NOT getting enough sleep because of me.

Hopefully the AE settings will compensate for my snoring. I've set the maximum EPAP higher than we had it before. If the FOT's wake me up, I can live with that as long as my husband sleeps.

Cross your fingers.

[ems]

Hopefully the AE settings will compensate for my snoring. I've set the maximum EPAP higher than we had it before. If the FOT's wake me up, I can live with that as long as my husband sleeps.

Cross your fingers.

Fingers crossed but I'm sure someone will chime in with a brilliant fix!

[Madalot]

Hopefully the AE settings will compensate for my snoring. I've set the maximum EPAP higher than we had it before. If the FOT's wake me up, I can live with that as long as my husband sleeps.

Cross your fingers.

Fingers crossed but I'm sure someone will chime in with a brilliant fix!

Thank you! If nobody does by around 10:30 - 11:00 pm EST, I'm running with what I've done!

[Hawthorne]

As I've said before, My husband and I made the decision years ago to go to separate beds. It was the best thing for both of us. It has made no difference In our relationship at all. We are both much happier because we both get better rest. It seems you need to at least do that.

[aytikvjo]

I've played with AVAPS-AE, but never stuck with it because of the disturbing nature of the FOTS. It was easier for me just to raise the EPAP statically

[Madalot]

As I've said before, My husband and I made the decision years ago to go to separate beds. It was the best thing for both of us. It has made no difference In our relationship at all. We are both much happier because we both get better rest. It seems you need to at least do that.

We discussed this last night and my husband was less than receptive. He just likes being together, but more than that, I think he feels that he needs to be with me in case I have a problem during the night. The other bedrooms on are different floors and I think he's got a fear that something will happen and he won't hear me (which is a valid concern).

I've played with AVAPS-AE, but never stuck with it because of the disturbing nature of the FOTS. It was easier for me just to raise the EPAP statically

I stopped messing with it for the same reason. A few months ago, I COULD switch between sides and get by. Now, I can't sleep on my left side at all and my right side gets too painful after two hours or so. I HAVE to sleep on my back some now.

When I first lay down last night, it was obvious I had something messed up because the IPAP was only hitting around 15 or 16 (my minimum is 18). I fiddled with the settings (and I'll be honest it was fiddling, nothing with any degree of certainty about what I was doing) and got it to get the IPAP to 18. Once I got that accomplished, I got comfortable and tried to go to sleep.

The FOTs appeared on schedule but since this is very important, I tried to ignore them. And I fell asleep. I flipped on my back as usual, but my husband did NOT bug me. I slept reasonably well and turned to my side again in early morning. I asked him if I snored and/or bothered him during the night and he said "Not too bad."

So, I'm leaving the AE settings as they are, for now, and sleep with it for a few nights. Then I'll check the data and do a pulse ox test to make sure things are the way they should be.

[Julie]

Hi - thought this might be of interest...

http://www.va.gov/MS/articles/Selecting ... ith_MS.asp

[Madalot]

Hi - thought this might be of interest...

http://www.va.gov/MS/articles/Selecting ... ith_MS.asp

This is interesting, Julie. While I don't have MS (I have MD) many of the things talked about apply to me as well.

[palerider]

how about going with two beds side by side?

two single beds side by side are similar in size to the king (iirc) you have, but you'd each have your own cover set, so he woudn't be stealing yours.. he'd still be in the same room and could help you if needed.

[Madalot]

how about going with two beds side by side?

two single beds side by side are similar in size to the king (iirc) you have, but you'd each have your own cover set, so he woudn't be stealing yours.. he'd still be in the same room and could help you if needed.

Right now, he's not open to making any major changes, including different rooms/beds. I've broached the subject of an adjustable bed (still King) with separate controls so I could elevate my head when on my back, but go flat again when on my side. My first sleep study had a working sleep number bed and I LOVED it. It was very comfortable. But he's made it clear he is NOT open/ready for anything like that at this time.

After my fall in June, his main focus is figuring out how to remodel our bathroom (we're working on getting the money right now) so that I can sit in the shower and be able to get in/out of our bathroom easier.

If I can get the AE settings to minimize snoring while on my back, I can let the bed thing go for a while until we figure out the bathroom & our money situation.

[palerider]

If I can get the AE settings to minimize snoring while on my back, I can let the bed thing go for a while until we figure out the bathroom & our money situation.

I wish I could offer a suggestion on that, but I don't know anything about the trilogy hopefully someone else will pop in, or maybe you can either make another post, or change the title in this one, so the headline makes it more clear what you are looking for?

[Madalot]

If I can get the AE settings to minimize snoring while on my back, I can let the bed thing go for a while until we figure out the bathroom & our money situation.

I wish I could offer a suggestion on that, but I don't know anything about the trilogy hopefully someone else will pop in, or maybe you can either make another post, or change the title in this one, so the headline makes it more clear what you are looking for?

Thanks for the suggestion. Unfortunately, there are very few people familiar with the Trilogy and/or the AVAPS & AVAPS-AE settings. Those that know either aren't on the forum at this time or don't have any input for me.

I slept fairly well last night and apparently did NOT disturb my husband much, so I might be on the right track. Assuming things stay the same on these settings, I'll download my data in a few days and do a pulse ox. If things aren't right THERE, I'll have to tweak the settings again.