One year -- whazzup with these numbers?

[RubySnooze]

can you enlist the aid of your husband to see if he can figure out where the air is leaking while you're sleeping? perhaps with the aid of something like a matchstick with a bit of thread tied to the end to be blown by air currents?

Thank you, Palerider. Hubs is willing to try pretty much anything. Also says to tell you that he gets up in the middle of the night with a flashlight, when my machine is wailing away, and runs his hands along the tube and close to my face and mask and has never been able to find The Leak.

He was freaking out last night again 'cuz he thought I stopped breathing. He can usually hear my breaths, even though he's hooked up to his own machine (romantic couple that we are ). So I guess last night I had a flashlight pointed at my stomach until he could see breaths being taken.

We'll get set up with something on a thread to give him another shot at finding IT.

[palerider]

He can usually hear my breaths, even though he's hooked up to his own machine (romantic couple that we are ).

I slapped a mask on my bedpartner to quiet the bedshaking snoring. the couple that cpaps together, stays together

We'll get set up with something on a thread to give him another shot at finding IT.

usually the technique for finding faint drafts involves smoke, but I that's probably not a great idea, unless you've got a smoke machine with a hose attached (I have used one of these in the past to find leaks in an air mattress: https://www.thegrommet.com/zero-toys-va ... oCEJDw_wcB

the matchstick (or something similar) with some very lightweight thread (or something similar, bit of silk ribbon, something very light and sensitive to faint air currents) might help isolate the issue. if your hose doesn't have a hole in it, (and, it doesn''t because it wouldn't open and close) then it's got to be something where the mask interfaces with your face, or your lips. (I'm assuming, of course, that you're not a fish and don't have gills, so there's nowhere else for the air to go )

[Dubbayoo]

I would suggest you try the Swift FX Nano CPAP Mask. It's very similar to what you're using but it fits over the entire nose instead. You may even be able to use the same headgear as the Swift™ FX Nasal Pillow. I have both and prefer the nasal pillow headgear.

First, understand my untreated AHI was crazy high (92, not kidding). Even with a CPAP pressure of 19-20 my 90-day AHI average is 8.1. Too high, I know, but I've been trying to see what I can do to get it down before switching to BiPAP and it has been working. It stayed over 10-12 for the first year but that was so much lower than untreated I felt 20 years old again. Now I'm feeling tired again so I'm anxious to get stable under 3 AHI. 60-day AHI is now 7.6; 30-day=7; 14-day=6.5.

I started using the Swift FX Nano Wednesday and 3 of the last 4 nights my AHI has been under 5. Last night was 2.98...lowest since I started in April '14. The machine even adjusted down to 18, where it's been 19-20 the entire time I've used it.

I absolutely HATE the headgear but I can't argue with the results. The headgear digs into my face and the near constant whistling makes me think it's leaking so I keep adjusting it. It doesn't show any large leaks though. Making it tight enough to eliminate the leaks makes my face sore.

I use 5-10mg Melatonin and/or 3 caps ZMA to help me sleep.

[RubySnooze]

July 19
AHI 21.66
Pressure 13/13
No tape anywhere




Here's something crazy: the last two nights I have felt like I got better sleep. Even though AHI has been awful. I'm wondering if it's because I got two 3-hour chunks of sleep each night? That's really rare for me. I usually see an hour here, an hour-and-a-half there.

Did not tape either night in part to see what those leaks look like, unimpeded, at 13 pressure. And in part because we have company and kid-chaos level is high. By the time I hit the mattress I didn't have the stamina to fuss with tape.

Think I'll lower the pressure some and see if I can find the spot where the air chipmunks go away. And try taping the mask to my face.

Palerider, thanks for the suggestions and the link to the Vapo Blaster. Such a relief to finally know how to talk to kids about toroidal vortices. Can't tell you how I've been struggling with that. And a source for fog juice -- home run!

Dubbayoo, hi and thanks for posting about the Nano. Happy to hear it may be working for you ( 2.98 -- wow!). I see a new sleep doc in a couple weeks and will discuss mask options with him. Clearly an area I haven't solved yet.

[Pugsy]

It's not surprising that you felt better with just a couple of 3 hour sessions as opposed to the more frequent 1 1/2 hour sessions even with the ugly AHI. Fragmented sleep will just totally trash how we feel during the day no matter what the AHI might be. That's why we see so many complaints of people still not feeling rested despite a nice low AHI and come to find out they are having a lot of fragmented sleep sessions.

I wish you lived closer to me so I could just watch you one night. So I could see how you are using the mask and what might be causing it to lose the seal so much. Something just isn't adding up here and I don't know what it is.

[OSAHell]

Hi RobySnooze,

Thanks for keeping me entertained with your daily graph!

I don't know exactly how Sleepyhead calculate the leaks average, but data from your machine is really different than SH, even considering the fact that I'm missing 2 days.
Here your machine data up to July 18 vs data up to July 16 in SH
Machine data on July 18

One day = 11%
Seven days = 19%
Thirty days = 10%

Here the Sleepyhead numbers with data up to July 16
-Stats view: % of time above Leak Rate threshold
One day = Can't compare since I'm missing the July 18
Seven days = 51.34%
Thirty days = 29.33%

-Overview view: Large Leaks graph
One day = Can't compare since I'm missing the July 18
Seven days = Med LL 9.43%
Thirty days = Med LL 2.85%

Maybe it would be interesting to look at leak data in Encore program?

Do you have some kind of DV camera? Maybe you can try one to see what's going on during the night...

In my case, when I realized that my numbers weren't good on CPAP, I used one to record during a couple of night to see if maybe it was because I was sleeping on my back when I was having my cluster of apneas. It had a "night vision" feature (so just needed a dim light in the room) and I set it to record 1 frame every 1 or 2 second so all the night could fit on the tape and it accelerated the reviewing time. I did make sure the time I saw on the video feed was the same as the time I saw in SH, a LOT easier to follow!

Mouth taping

"I've tried every way I could think of. One strip vertically down the center, two strips vertically each just off center, one 1.25" strip horizontally, two verticals with a horizontal on top, surgical tape, painter's tape, 2" wide painter's tape with a small roll of gauze in the center to catch any drool, and last night the pièce de résistance: a horizontal strip of surgical tape over a small roll of gauze with a 2" wide horizontal piece of painter's tape on top."

You probably don't have any "shaving" to do in that region anymore!
Sorry, probably a bad taste joke to make to the opposite sex but just couldn't resist. And with every thing you tried I really don't know what else to suggest you...

Maybe you can try FFM again but sleep on your back if you can. Make sure to adjust your mask in your bed, while on your back and remember, don't tight it to much as it can also cause leak if it's too tight… I know it's not something usual to suggest but CPAP should be able to handle it. Your titration was all on your back so IF it was a good titration, the pressure of 13 should handle those events.

"Hole" in data and also thin Flow Rate...

(on July 17 data) ** What is going on around 5:40 when I have no respiration?

I'm thinking the same as the others here for that time but I also think that when looking at your Flow Rate graph when it's becoming really thin that it might also be because of the leaks… My first thought was that it was probably related to your breathing but looking back on your data previous to June, those thin flow period seem pretty much inexistant. Also when the flow is thinner the leaks are often in the high territory...

PS SleepingBeauty: I forgot to put this comment about Sleep hygiene in my previous post. Sleep hygiene is always something to look at but I don't think it can make her AHI number better. In my personal case, working on sleep hygiene was close to impossible when I was on CPAP with average AHI of 8 (and higher depending on pressure). I always had problem with sleep onset insomnia since I was a kid but when I started CPAP/APAP I started to get also sleep maintenance and early morning insomnia... It was only after few months on ASV (with average AHI under 2) that insomnia problems start to disappeared (without any meds) and that's why I've been trying to work on getting better AHI. I hope that when she'll get better AHI with the right leaks and/or pressure and/or machine, her sleep will probably get better and working on sleep hygiene should be a lot easier. Also, about the time in sleepyhead: PR S1 often have time drift problem (the 2 I tried had this problem) and I don't know anyway to ajuste the time on a Respironics Machines...

[Pugsy]

I don't know exactly how Sleepyhead calculate the leaks average, but data from your machine is really different than SH,

I think the problem is where you have SleepyHead set for large leak. You probably have 24 L/min for your ResMed machine and you need to change it to probably around 90 L/min for the Respironics machine.
I have this issue when I change between my S9 and my PR S1. One or the other is totally screwed up in terms of time in large leak. Makes for totally screwed up long term data when the 2 different machines are used.

We could use Encore...I have it if we want to go to that trouble but it really isn't necessary.
Just need to change the large leak line in the sand to around 90 L/min in your SleepyHead Preferences and the calculations should come into a number close to what her machine is reporting in terms of % of time in large leak.

[Pugsy]

While the machine % of time in large leak isn't probably ideal it isn't horribly horrible and if she wasn't having problems staying asleep I wouldn't worry an awful lot about it.
The time % will be correct that is on the machine...and 10% of the night probably isn't the end of the world.
out of 6 hours that's 36 minutes and not normally in one block. Time spent in really big leak over 100 L/min is minimal and that's where therapy and reporting could be impacted.

I was hoping to improve the leak line more to see if it helped with sleep quality than worrying about the therapy itself. To me the sleep quality and wake ups are more of a problem than the not so pretty leak line.
I was hoping that if the leak line got prettier that sleep quality would improve. Unfortunately we can't seem to make the leak line prettier so we still don't know if those leaks are impacting sleep quality and if so, how much.

I think that the fragmented sleep is probably a separate issue but since the leak line was ugly I was hoping that maybe fixing the ugly would fix the fragmented sleep.
Now the AHI is ugly too...I don't understand that expected now we need more pressure when in auto mode it didn't seem to go to the maximum all that much....I am really scratching my head over this one.

[RubySnooze]

July 20
Changed pressure to 11/13
SwiftFX taped to face

[Pugsy]

Looks like large leak territory is somewhere between 80 and 90 L/min. It will vary as the pressure varies when in auto mode.

Interesting that the machine didn't try to increase the pressure during that mess between 5:30 and 7:30.
Don't know what is going on there.

Was your mouth taped closed? And if it was, how secure was the tape when you woke up?
How secure was the masked still taped to your face when you woke up?

[RubySnooze]

Mask was on for 8 hours 57 minutes!

Changed pressure to 11/13

I wanted to get a peek at pressure if it had a little room to maneuver. Looks like the first half of the night it did bump up against the high pressure of 13.

** What are the pressure spikes around 8:00 a.m.? I was awake during that time and felt those spikes.

SwiftFX taped to face

Tape seemed to hold fine. I never found a loose edge. Leaks chart looks marginally better. Mouth was not taped and I was aware of some leak there. ‘Specially the second half of the night. I spose the next step is mouth taped shut and mask taped on.

I wish you lived closer to me so I could just watch you one night. So I could see how you are using the mask and what might be causing it to lose the seal so much. Something just isn't adding up here and I don't know what it is.

Ha…a whole new kind of slumber party. With me as the (incredibly boring) entertainment. I could set you up with wine and snacks and maybe a party hat… I should’ve grabbed you when you were in Vegas!

And yeah, how can I not find such major leakage?? You know it’s gotta be something big and obvious. I feel like such a dimwit.

You probably don't have any "shaving" to do in that region anymore!

You’re clearly not familiar with older women.

Maybe you can try FFM again but sleep on your back if you can.

I was wondering about trying FFM again. Problems being: the leaks under the cheek bones always woke me up. And my headgear allergy means I have to sleep in a hoodie. Blippin’ neoprene. I still have rashy areas that haven’t healed from last November.

** If I go FFM, I should try back-sleeping and a 13/13 pressure?

I was hoping to improve the leak line more to see if it helped with sleep quality than worrying about the therapy itself. To me the sleep quality and wake ups are more of a problem than the not so pretty leak line.

I really appreciate the focus on getting some better sleep. Have slept better the last three nights. Despite how SH looks. Each of those nights I’ve had one or two segments in excess of three hours, which hadn’t happened for a very long time. And each of those nights I felt my sleep quality, ‘specially the first half of the night, was better than it had been. Feeling a step better than the walking dead person I’ve been.

** Is there any way that the 13/13 pressure is letting me sleep better or longer, despite the increased AHI?

Even though leaks are outta control, I sleep better using the nasal pillows than when I was using the FFMs. Most of the time with the pillows, I don’t feel the leaks, even though they’re there.

Now the AHI is ugly too

** Does anyone else think higher pressure did reduce OAs and CAs? But increased hypops?

Thank you all once again for your time and input. Every day I learn more from you. Maybe by August 1st you'll have me up-to-speed enough to hold my own with the new sleep doc!

[OSAHell]

I think the problem is where you have SleepyHead set for large leak. You probably have 24 L/min for your ResMed machine and you need to change it to probably around 90 L/min for the Respironics machine.

That make sense, like you said, there a "Flag leaks ever Threshold" parameter in Sleepyhead's preferences and mine is set to 24L/min.

I have this issue when I change between my S9 and my PR S1. One or the other is totally screwed up in terms of time in large leak. Makes for totally screwed up long term data when the 2 different machines are used.

Don't tell me! I have been on 5 different machines in the last year and a half from 3 diff. brand... :/

We could use Encore...I have it if we want to go to that trouble but it really isn't necessary.

You're right, it would probably don't tell us much more than we already know...

Now the AHI is ugly too...I don't understand that expected now we need more pressure when in auto mode it didn't seem to go to the maximum all that much....I am really scratching my head over this one.

I assure you, you're not the only one scratching his head... As I stated earlier, I think there's more than just obstructive problem going on here like probably central hypopneas but with all those leaks it's hard to tell. On the first 4 months of her therapy she had an average PB (CSR in SH) of about 2% for each month. Now with high leaks PB is 0.05% for July... When I look at some nights in those first months her Flow Rate deffinetly show some sign of PB but it's not as obvious as I thought or as can see in my own case.

Looks like large leak territory is somewhere between 80 and 90 L/min. It will vary as the pressure varies when in auto mode.

That also the conclusion I came to on my July 18 post... Could it be a defective machine?

Interesting that the machine didn't try to increase the pressure during that mess between 5:30 and 7:30.
Don't know what is going on there.

That was pretty much expected since the machine showed similar behaviour when she was on APAP and started posting her daily graph if I remember correctly. Until she see her new Doc in less than 2 weeks, I think going back to APAP is pretty much useless. She might have some breathing problem that are just exacerbate when on APAP... I have this problem when I'm on APAP and the lower AHI average I could get (around 8-9) for a month was with a fixed pressure of 5! Even with that pressure my AHI would go at least once a week in the 20s territory but they were about 80% central apnea, so not much trouble identifying the problem except maybe for the Sleep Docs... :/

[Pugsy]

Doubtful. It's normal for the large leak line to move when APAP is used. Short on time. More later.

That also the conclusion I came to on my July 18 post... Could it be a defective machine?

[OSAHell]

Mask was on for 8 hours 57 minutes!
...
** What are the pressure spikes around 8:00 a.m.? I was awake during that time and felt those spikes.

Maybe pressure probing by the machine? Pugsy what do you think?

Maybe you can try FFM again but sleep on your back if you can.

I was wondering about trying FFM again. Problems being: the leaks under the cheek bones always woke me up. And my headgear allergy means I have to sleep in a hoodie. Blippin’ neoprene. I still have rashy areas that haven’t healed from last November.

** If I go FFM, I should try back-sleeping and a 13/13 pressure?

Considering your allergies to the FFM, thanks for the reminder! And the fact that you seem to sleep better with the new mask/setup in the last few night I would keep the new mask but would go straight to the "option 2" of my July 18 post (go to fixed pressure of 8 and lower) since, even with lower leak, pressure of 9 or more didn't show any good AHI. We might be surprised at what (low) pressure your AHI start to go down!

** Is there any way that the 13/13 pressure is letting me sleep better or longer, despite the increased AHI?

From what I've seen so far, I think it would be unlikely but I might be wrong

** Does anyone else think higher pressure did reduce OAs and CAs? But increased hypops?

I don't know about CAs, your data don't show lots of them, BUT if part of those hypops are central, it sure can!

Doubtful. It's normal for the large leak line to move when APAP is used. Short on time. More later.

Could it be a defective machine?

I know that on APAP large leak line would often move up when going up in pressure but what I meant was that if "normally" a similar machine in good working order can compensate leak up, lets say, 100 L/min, can her particular machine start having problem at 80-85 L/min? I'm so out of ideas that I'm just trying to look at every angle even the smallest one...

[RubySnooze]

Oh...one other variable. I've had some hose management (hook on wall above bed) the last three nights.