One year -- whazzup with these numbers?

Well that didn't go quite the way I expected.

Sep 2
Pressure 9 / 11
Swift FX with Micropore tape

Wonder what's going on at the beginning of the night to cause such a change.
Were you by chance maybe on your back more?

Pugsy wrote:Wonder what's going on at the beginning of the night to cause such a change.
Were you by chance maybe on your back more?

I could be spending more time on my back. For some reason, aches-n-pains have been worse lately when laying on my side. Wouldn't expect that to cluster early in the night, but guess it might.

Man, it's always sumpthin'.

Maybe you are going to your back sooner.

In general when we see a report where some of the time is really good and some of the time things aren't so good we think "what changed between the times"...and the 2 most common causes are supine sleeping and/or REM stage sleep.
Early in the night...that's too soon for most first REM to occur and that's why I thought supine sleeping.
Later on in the night is when REM is more likely to happen.
First REM is usually around 90 minutes after sleep onset and subsequent cycles bring REM around sooner and lasting longer provided we don't break the cycle too much.

I have been battling some extra aches and pains myself lately. One is my left shoulder since spring and unfortunately that is the side I usually at least start the night out on and even when I try my right side..the sagging of the left side causes pain but at least is less pain than when I lay on it but it's still enough to disturb my sleep.
Then if I get off my sides onto my back or even on my stomach...then the damn back hurts and wakes me up and to top it all off recently both knees have been acting up and last week one of them hurt so bad that I couldn't turn over in bed because it REALLY REALLY hurt to move the knee but I just had to get off my back.

You are right...always sumpthin.

I won't even get started on what happens when I take meds to help with the pain at night...then my ass is dragging the next day because of the hold over from the meds...but right now that hold over is less of a problem than the problem that a gazillion wake ups from the pain would cause.
Damned if I do and damned if I don't.

Pugsy, thanks so much for the detailed explanation! You've given me two much-improved nights:

Sep 3
Pressure 9 / 11



Sep 4
Pressure 9 / 11




Thanks so much for always nudging me back on track! And sorry you're dealing with the As-n-Ps too. They really do screw with your sleep, don't they? Sending pain-squashing vibes your way! <3

Just got back from follow-up appointment with Doc #2. He wants to see how I do on a bipap. I still get the feeling that he is just glossing the surface of my situation, but I agreed to come in and take the bipap for a half-hour test drive during the day.

When pressed, he said he thinks I've done everything possible to make the APAP work but that it's probably not the right machine for me. The only rationale he gave for bipap was that it might be easier for me to tolerate. I don't feel like I have trouble tolerating the APAP. It's more like it's not tolerating ME.

He also wants me to start on albuterol. Says my breathing test showed changes consistent with asthma.

When I was on APAP my minimum was 10 and sometimes it went to 17 or 18. I was doing well with it. No problems really and I thought that I was probably doing as well as I could expect and sleeping decently considering my other issues.

Then I got a BiPap (bilevel) used for a friend of mine that had to use 16 to 18 cm pressure all the time and she had a little bit of COPD and it was a bit of work for her to use those pressures and she didn't like auto adjusting at all.
It was a used machine and she wanted me to check it out before getting it to her.
So I got it and played with it....Took me all of about 2 minutes to decide "I gotta get me one of these".
So I used it 3 nights...man was it ever sweet and I didn't even have the pressures quite optimal. So I send it to my friend and tell her if she didn't want it I would gladly take it back....she got it and used it and after the first night her response was "over my dead body"

So I had to find one for myself. What I discovered was I felt a little better overall using the bilevel and I was looking at the reports after about 6 weeks and I noticed that I gradually had increased my sleep time by 45 minutes when compared to sleep time with APAP. It wasn't a dramatic overnight thing but it was gradual. For some reason (never could figure out why or what) I was sleeping longer with the bipap and for me sleeping longer meant feeling better. I can always see a big difference in how I feel when I can't get the time asleep that my body seems to need.

So...to make a long story short...bilevel might help you get a little bit better (or longer) sleep and it is well worth trying even though you really don't seem to have a problem with apap. It sure won't hurt and it might help and if the doctor is willing to help you at least try it...then do it. Your sleep quality is like mine...fragile because of most likely those other things you have going on. Anything that you can do to maybe make the slightest improvement is well worth trying.
We may have to do a little more tweaking of the pressures with bilevel but that's not a problem.

Pugsy, you always make me feel better. Excellent story about your intro to bipap. Thank you!

Is there a specific type of bilevel machine I need to make sure I get? If things go that way...

Also, Doc 2 said oxygen desats were in the mid 80s all three nights of the in-home study. That was while I was on the apap, of course. And no long runs of sleep, just short segments.

A year ago, two-night oximeter test showed desats to the mid 70s (no machine in use). I've been concerned that no one is checking to see if my oxygen levels are okay, now that I'm on the apap.

I'm wondering if nighttime oxygen might be worth trying? Especially given how crappy my overall health is right now.

Thank you so much for all you do!!

In terms of bilevel machines there's really just 2 main players...Respironics and ResMed.
All are full data and work with SleepyHead or respective manufacturer software.
They might just add the bilevel that works with your existing humidifier and that would be the PR S1 60 series BiPap...either Pro or BiPap Auto.
The ASV models are also bilevel but I doubt they would be wanting to go that way with you.
Most likely what I call the "plain bilevel" would be what you would get.
The Pro model 660 has 2 modes of operation...cpap and fixed bilevel
The Auto BiPap model 760 has 3 levels..cpap, fixed bilevel and auto adjusting bilevel
ResMed has similar machines. I have owned both. Minor pros and cons with either..both are great though.
Devilbiss makes a bilevel but I know nothing about it and it isn't commonly dispensed.

Talk to your doctor about adding O2 at night. I might help your overall well being feelings...mid 80s is a bit too low. Even Medicare allows for adding O2 if it drops below 88% for 4 or 5 minutes during the night.
Worth trying for sure.

Pugsy wrote:In terms of bilevel machines there's really just 2 main players...Respironics and ResMed.
All are full data and work with SleepyHead or respective manufacturer software.
They might just add the bilevel that works with your existing humidifier and that would be the PR S1 60 series BiPap...either Pro or BiPap Auto.
The ASV models are also bilevel but I doubt they would be wanting to go that way with you.
Most likely what I call the "plain bilevel" would be what you would get.
The Pro model 660 has 2 modes of operation...cpap and fixed bilevel
The Auto BiPap model 760 has 3 levels..cpap, fixed bilevel and auto adjusting bilevel
ResMed has similar machines. I have owned both. Minor pros and cons with either..both are great though.
Devilbiss makes a bilevel but I know nothing about it and it isn't commonly dispensed.

Talk to your doctor about adding O2 at night. I might help your overall well being feelings...mid 80s is a bit too low. Even Medicare allows for adding O2 if it drops below 88% for 4 or 5 minutes during the night.
Worth trying for sure.

Thanks bunches for the info, Pugsy! I am feeling much better as I head into Bilevel World.

This doc may be a Respironics guy. He chose the PR ASV for hubs. If this was 2017, hubby would qualify for a new machine and I could take his used ASV.

Do patients ever rent a machine for a month or two to make sure it's gonna work for them? I'm feeling cranky after spending a ton on the APAP and now looking at buying a bilevel less than a year later. And thanks, crappy insurance, for deciding that all equipment comes strictly out of my monster deductible.

I will press the concentrator issue with the doc. Thanks!

RubySnooze wrote: Do patients ever rent a machine for a month or two to make sure it's gonna work for them?

Not normally here in the US. Now in Canada it seems to be done fairly often.
You could ask your equipment supplier if it is possible to try maybe a loaner or used machine for a couple of months. If you don't ask the answer is always "no".

Ruby,

I started with APAP, moved to BiPap 4 months later, and ASV a year after that. I continued to wake up all night long for the next 4months. I bought an overnight recording pulse-oximeter and discovered lots of desats and SpO2 in the 50's. I was put on supplemental oxygen and after the first night I immediately felt better. I still wake up several times a night, but I go right back to sleep. The O2 has made a real difference in the way I feel in the morning.

M'ohms wrote:Ruby,

I started with APAP, moved to BiPap 4 months later, and ASV a year after that. I continued to wake up all night long for the next 4months. I bought an overnight recording pulse-oximeter and discovered lots of desats and SpO2 in the 50's. I was put on supplemental oxygen and after the first night I immediately felt better. I still wake up several times a night, but I go right back to sleep. The O2 has made a real difference in the way I feel in the morning.

Thanks for sharing that, M'ohms. So glad you were able to get it identified and treated!

I really do suspect I've got something similar happening here. Insomnia and fragmented sleep, but also lots of health issues that possibly are not improving, even with major treatment, because the cells can't heal without adequate oxygen.

I've got oxygen at the top of my get-it-done list!

Do you think you might have been okay with a lesser machine (than the ASV) if you'd gotten supplemental oxygen sooner?

I don't think so. Typically, my patient triggered breaths % is around 79%. This means that the ASV initiates breaths for me 21% of the time. A lesser machine would not do this. I love my ASV!

I am really fretting that I'm gonna ransack our ever-dwindling retirement account to buy this flippin' bipap and be told eight months from now that I have to buy an ASV. Is there anything in my stats that shows I don't need an ASV?

Meanwhile, what am I doing wrong with the APAP? Last night's numbers here: