One year -- whazzup with these numbers?

Pugsy wrote:To OP...your additional sizes of the nasal pillows should arrive tomorrow according to the post office. Maybe a different size will be more secure.
Forgive me but I may have already asked this question and I don't have time to go back through the entire thread ....but do you take any meds for any reason?....and do you by chance have issues with arthritis or fibromyalgia like discomfort?
And one more question...have you ever taken anything to help stay asleep?
Thank you for doing the awake leak test for me...I was hoping that maybe we simply had a hole in the hose but it doesn't look like we got lucky in that regard.
I am still scratching my head on how to get the mask to be more stable. That amount of leak even though technically not in large leak territory all that long still bothers me.
Do you use a hose management system of some sort? If not, maybe something to try to help reduce hose pulling on the mask as a culprit.

Hi Pugsy,

Thank you for the add'l pillows! I am watching the mailbox. Thanks, too, for the detailed explanation for tedburnsIII. Nicely summed up!

Per your questions:

Yes, I do have health issues that may be impacting sleep. And yes, I do take meds. Although I believe you reviewed and decided they are not likely to be aggravating my sleep situation. I'd hate to think I'm on some rx thing that causes insomnia, as my doc is well aware of how much trouble I'm having with sleep. Doesn't mean it's not happening!

As for taking something to help stay asleep, I'm not really sure. Right now I'm on a mix of low doses of melatonin, duloxetine, doxepin, Teitlebaum's sleep formula, and 2.5 mg zolpidem. If I can't go back to sleep when I wake up in the middle of the night, I take another 2.5 mg zolpidem. If one of those rxs is supposed to keep me asleep, it's not workin'!

Re hose test: I did the hour of laying and also put my hand over the end of the hose while the machine was running. Didn't find any leak. I do have a new, unopened hose here and will switch to that just as a final check.

You are psychic on the hose management system. I was reading some earlier threads about that. With your nudge, I bought a hook yesterday and will rig up something for tonight. With the nasal pillows I am much more successful at sleeping on my side, but the hose is in my way more than when I was forced to sleep mostly on my back.

I really feel like the nasal pillow itself is quite secure. I never find a leak there. It stays secure when I roll onto my side (unlike the FFMs). I find that my lips open some, but when I'm aware of it there is never that huge flow of air. And would lips slightly parted be enough to rack up those big leak numbers?

Oy.

RubySnooze wrote:

BleepingBeauty wrote:I agree with previous posts that the leak is too high; might not enter LL territory for long periods of time, but it's still too high for the pressure you're running at, IMO.

Also, it seems to me that one thing's been overlooked here, and that's your sleep hygiene (good sleep habits). FYI, this might be helpful: http://healthysleep.med.harvard.edu/hea ... oming/tips

Hi BleepingBeauty,

Thanks for weighing in. Yes, the leaks are killing me. And have worsened over time, which is very frustrating. I really am at wit's end on what to try.

You say you're taping your mouth completely closed, and you're not aware of any serious leaking from the mask; but the charts sure would indicate that big leaks are coming from somewhere. Is there any possibility that you've got a defective hose (or just a bad connection at one of the rubber ends)? I'd double-check the rubber tips of the main hose as well as the short one on your mask - if it has one - as well as all of the connections, just to be sure everything's in good shape and seated properly. Just doesn't make sense that the machine is recording so much leak if the all of the equipment and connections are in good working order...

Re sleep hygiene: great article; thanks for posting. Again, not sure where to go with this. I'm living pretty clean in terms of sleep hygiene. I actually start the sleep process way before my Sleepyhead charts kick in. Usually in bed no later than 10:30. Just can't sleep. And then can't stay asleep. Have some health issues that could be impacting this.

Anyway, really appreciate your post. Thank you!

If you're in bed and using the machine at a reasonable hour, it's not indicated by the charts' timing. Perhaps the time is a couple of hours off on the machine (it wouldn't be an issue from Sleepyhead's POV, since the program is only importing the data from the machine). I don't know how to fix that if that's the issue, but there must be a way. You can test its accuracy yourself, by noting the time of night you hit the hay (or the time of a daytime nap) and then checking it against the machine's data to see if the clock is correct.

Sorry I don't have anything more to offer you at the moment. If I do come up with something else, I'll be sure to post it.

RubySnooze wrote:And would lips slightly parted be enough to rack up those big leak numbers?

Unlikely. I have woke up and actually be mouth breathing gently and you can barely see it on the leak graph and only if you knew where to look. I don't have time to go find that example right now but I actually did a 15 minute continuation of the mouth breathing to see what it looked like on the leak graph and then I turned the machine off so I would know where to look.. Known mouth breathing but very gently didn't cause but a very small increase in the leak graph.

The hour test was to see mainly if the leak graph still showed something which might have meant a leak in the hose somewhere but I think a switching out of the hose would be a good thing to try just in case.
Otherwise those leaks look line mine do when the headgear gets too loose and the nasal pillows are unstable and slide all over the place and sometimes it wakes me up and sometimes it doesn't. It's a problem with the P10 headgear stretching and my own lack of a hose management system (I just don't have real problems that often so I haven't bothered) causing the pillows to come out of the nostrils.

Let's see if a little hose management helps or not.

BleepingBeauty wrote: Is there any possibility that you've got a defective hose (or just a bad connection at one of the rubber ends)? I'd double-check the rubber tips of the main hose as well as the short one on your mask - if it has one - as well as all of the connections, just to be sure everything's in good shape and seated properly. Just doesn't make sense that the machine is recording so much leak if the all of the equipment and connections are in good working order...

there was a chart a couple days back where she said she'd worn the mask for an hour or so before going to sleep, the leak line was perfect. that says to me that it's either the mask getting pushed off to the side, or lip leaks.

palerider wrote:

BleepingBeauty wrote: Is there any possibility that you've got a defective hose (or just a bad connection at one of the rubber ends)? I'd double-check the rubber tips of the main hose as well as the short one on your mask - if it has one - as well as all of the connections, just to be sure everything's in good shape and seated properly. Just doesn't make sense that the machine is recording so much leak if the all of the equipment and connections are in good working order...

there was a chart a couple days back where she said she'd worn the mask for an hour or so before going to sleep, the leak line was perfect. that says to me that it's either the mask getting pushed off to the side, or lip leaks.

I went back and found that particular graph just now. The leak is obviously happening during sleep, so it probably *is* coming from the mask, itself. Since I believe she said she's taping her mouth completely, the mask is likely the culprit. Perhaps it would make sense to put a piece of tape around the nasal pillows, then, too, just to stabilize them. Worth a shot, I'd think.

Ruby, I'd try taping the mask, itself (to either side of the nose and/or your cheeks) for a couple of nights and see what the data reveals. Hose management will surely help, whether or not you choose to try taping the mask.

OSAHell wrote:How was last night? I'm guessing not good...

Will post SH stats below to entertain you.

I'm really thinking that those leaks mess the whole thing up here more than we already think... Even if they don't seem to be high enough most of the time to (theoretically) be a problem for the machine to keep the set pressure, they maybe are high enough to mess up the data we're looking at... Particularly when you hit the 80-90 L/min leak mark. And looking at your past data (Large leak graph in Overview view), The large leak start to come up pretty much every nights since may 29, that was just few days before your started to raise the EPAPmin.

Agree. Early on, the leaks were not a problem. Then I started having a bad night here and there. By May, I was having a lot of bad nights. Now it's every night. So it's been a progressive problem.

May 29 is also a few days before I gave up on the Quattro FX FFM and tried the Mirage FFM. I always had trouble with leaks under my cheekbones, but they got progressively worse as the months went on. At the time, I thought they were responsible for my bad leak stats. And I was convinced they were waking me up all the time. But three masks later (Mirage Quattro FFM, AirFit P10 nasal pillow (started June 23), Swift FX nasal pillow) leak stats are worse than ever. At least I don't FEEL leaks with the nasal pillows.

And raising the EPAPmin just seem to worsen the large leak % most of the time. I know you tried and switched between few masks in the last few months from time to time but the one thing that was pretty consistant before may 29 was the fact that there was virtually no large leak showing up on the graph since the start of your therapy. Your AHI numbers wasn't good but you didn't seem to have leak problem. Up until June, your average pressure for each month was in the range of 6 to 8 and 90% Pressure in the 9-12 range. But since your APAP didn't raise the pressure much when you were wide open (4-20) and up to (8-20) as discuss before, it was surely easier on your leaks. We might be on a "Catch 22" problem here until we figured out the leaks...

Ugh.

Can you check on the Info Screen of your machine for the Large leak data?
There should be a 1 day, 7 days and 30 days %time number for each. I would like to compare them with Sleepyhead data…

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

As for your “mouth taping”, can you tell how you tape it? For example, do you use a wide tape horizontally that completely seal your lips or maybe 1-2 stripes of tape vertically that keep your mouth/lips closed but don’t completely sealed them?

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.

Also, if you noted which mask you used every nights for some time, you might look at the Large leak graph in Overview view and compare your %Large leak with the type of mask and if you mouth was tape or not to see if there's a big correlation between numbers and mask/tape setup.

I didn't start taping, of course, until I'd been on the P10 for a couple nights. Since then, I've done a couple experiments where I use tape for part of the night and go without for part of the night:

July 11: went without tape the first part of the night, then taped up from @ 5:00 a.m. on.
July 17 (will post below): used tape 'til around 4 a.m. then went tapeless the rest of the night.

Both nights with tape was somewhat better than without, but not a lot better.

I was really hoping I could get the leak thing figured out before seeing new doc, but guess he's going to have to tackle it. I am truly out of leak-fighting ideas. 'Spose I could go back to the Quattro FX FFM for a couple nights and see what happens. Downsides are I know I'll have a bunch of under-cheekbones leaks which disrupt sleep, and I'm allergic to the headgear.

Dang...I must've been a real miscreant in a previous life.

As for the next move with the pressure... I don't think going up in pressure will be of any use/help with those leaks at this point. And you finally got your 1 week of data, even though leaks are not goods… Since you'll be seeing what appeared to be a good new sleep doc in 2 weeks I would do one of the following 2 options until then if I were you: Stay at fixed 13 and try to figured out the leak’s cause and working on fixing the problem. Or lower the pressure to hopefully get some relief (lower AHI) to a fixed 8 for a few night and “lower” the pressure by 1 every 3-4 nights to do some “probing” on your AHI number until you see higher AHI trending. I would stick with fixed pressure for now since your data showed that your machine doesn’t seem to respond well on APAP anyway for whatever reasons. You might also try option 1 for a few nights and go to option 2 when you “have enough” figuring out leaks… Sorry that I don't have better/quicker option for you.

Thank you so much for the suggestions, OSAHell. Will give this some (sleep deprived!) thought.

July 17
Pressure 13/13
Well taped 'til @ 4 a.m., tape free after that

** What is going on around 5:40 when I have no respiration?

RubySnooze wrote:July 17
Pressure 13/13
Well taped 'til @ 4 a.m., tape free after that

** What is going on around 5:40 when I have no respiration?

my guess, the leaks are so high the machine can't detect respiration.

palerider wrote:my guess, the leaks are so high the machine can't detect respiration.

Ha! Thanks, Palerider.

I was trying to remember if I was dreaming about a bright light at the end of a long tunnel...

RubySnooze wrote:

palerider wrote:my guess, the leaks are so high the machine can't detect respiration.

Ha! Thanks, Palerider.

I was trying to remember if I was dreaming about a bright light at the end of a long tunnel...

most likely not. I've seen this kind of behavior in reports from respironics machines before, usually when there's enough leak that your breathing isn't causing enough change in the flow for the machine to register. it may still be making some variation, but it seems there's a cutoff where it just throws up it's hands and goes off to sulk for a bit.

pretty sure you WERE breathing, though probably having apneas, otherwise you'd be literally brain dead, if not dead dead by now

on the other hand, we do have at least one ghost posting on the forum, are you two? WERE you crushed by that house??? I mean, if you're a ghost now, it's no WONDER you have such a high leak rate

Yeah that little blank at 5:40 or so was big leak affecting the machines sensors...making them useless.

I have seen apaps and auto bipaps behave like cpaps because of high leaks...they don't/can't auto adjust and just provide fixed pressure.
People who send me a report and say their machine was broken and come to find out leaks were exceeding 100 L/min pretty much the entire night.
Fixed the leaks and it fixed the machine and they went back to auto adjusting like they were supposed to.

10% of the night in big leak probably isn't the end of the world if you slept well and were feeling decent but you aren't sleeping all that well.

10% if 6 hours (360 minutes) is only 36 minutes and that's not the end of the world especially if it is broken up into 5 minutes here and 10 minutes there.
We still want to improve on it but it's not like the entire night is in the toilet.

BleepingBeauty wrote:The leak is obviously happening during sleep, so it probably *is* coming from the mask, itself. Since I believe she said she's taping her mouth completely, the mask is likely the culprit. Perhaps it would make sense to put a piece of tape around the nasal pillows, then, too, just to stabilize them. Worth a shot, I'd think.

Ruby, I'd try taping the mask, itself (to either side of the nose and/or your cheeks) for a couple of nights and see what the data reveals. Hose management will surely help, whether or not you choose to try taping the mask.

Thanks, BleepingBeauty. Yeah, I don't see any explanation other than mouth leaks or mask shifting. Although I've been struggling with this through four different masks. Unfortunately, since I switched to nasal pillows, I've only been awake twice when the leak was really going full out. And both of those times I was unable to find any leak.

The painters' tape I've been using does have a tendency to lift a bit because of skin moisture. But I gotta think it takes a while for that to happen. Yet those leak numbers skyrocket as soon as I go to sleep. Oy.

You made me remember that I did tape the mask to my face one night. With no obvious benefit. But I will give that another try; thanks for the suggestion. I've also got what I need to anchor the hose above my head and will set that up tonight.

Onward in pursuit of acceptable leakage. Thank you for all the suggestions!

RubySnooze wrote:Thanks, BleepingBeauty. Yeah, I don't see any explanation other than mouth leaks or mask shifting. Although I've been struggling with this through four different masks. Unfortunately, since I switched to nasal pillows, I've only been awake twice when the leak was really going full out. And both of those times I was unable to find any leak.

The painters' tape I've been using does have a tendency to lift a bit because of skin moisture. But I gotta think it takes a while for that to happen. Yet those leak numbers skyrocket as soon as I go to sleep. Oy.

You made me remember that I did tape the mask to my face one night. With no obvious benefit. But I will give that another try; thanks for the suggestion. I've also got what I need to anchor the hose above my head and will set that up tonight.

Onward in pursuit of acceptable leakage. Thank you for all the suggestions!

One more suggestion for you, Ruby, re: taping your mouth. Some people put a thin layer of Milk of Magnesia around the mouth and let it dry before taping, to make the tape easier to take off in the morning; it might also help you with stopping any skin moisture from loosening the tape. Sexy, I know , but if it helps...

Good luck tonight with the hose hanger!

July 18
Pressure 13/13
No tape anywhere on my body
New hose management system in place

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?