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My last musing (babbling) is an example of why one should not post at 2:00 a.m. when one should be sleeping! The brain was obviously not fully engaged. I should be kept away from the computer at such times. Maybe there should be some sort of device that measures brain function when using the computer, and it'll lock you out if you aren't thinking clearly.

Your RERAs are what got me looking into UARS. While your sleep study results don't seem to fit the definition of UARS, one of the things that stood out to me was Dr. Park's statement that "UARS patients have intact or hypersensitive nervous systems and sleep apnea patients have diminished nervous systems". Since you have described yourself as a highly sensitive person in a past post, I guess I was making some correlation there.

I'm very interested in what you discover, secret agent girl, and I hope you're sleeping soundly and feeling great very soon! I'm learning a lot by reading what you and the experts write! I always enjoy reading your posts.

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Your Question:

I would like to hear your ideas on whether you'd change anything at this point, and if so what.

The answers provided:
From Ozji

I would do either of the following:
•Keep the pressure at a very narrow range, e.g. 9-11, or at least bump the min. to 10
•Set the machine on a fixed pressure of 10 or so, depending on where the 95% was for the majority of those nights.

From Julie

If you mouth breathe once asleep and lose the Cpap air that way, you're not going to feel a lot better, so if you can try taping for a couple of nights to see if it helps, you may then want to look at full face masks.

From Black Spinner

Meditation is good too. Try to remember that for years your mind has been keep you alive by keeping alert and not letting you sleep deeply It is maybe still in "Stand on guard for thee" mode (as the Canadian anthem goes) and trusts this thing on your face even less. My doctor said that the mind can hold on to this mode for months. Using meditation and affirmations you may be able to deal with that. You have to persuade (not coerce) your inner self that this is good for you and it is safe to sleep.

From GerryK

I am sure you have read on here that having a pressure too high can cause more apneas or cause apneas by inducing central apneas.I would go back over your data and see what the highest your machine went up to and look at that and your 95% and probably set your machine at a fixed pressure either very close to or at your 95%.

From Dream STalker

If you can't do the savvy plot ... use your 95% average value and see how that goes in CPAP mode.

The list goes on and on.....answering your question "what would you change 1st?"

So now you don't know what to look for?????? I guess I no longer understand what you are looking for?

KatieW wrote:Dori, you are such a loving wife, your husband is a very lucky man to have you watching over him, like a guardian angel.

Hi Katie, I just noticed your sweet comment, thank you. Sometimes caregivers need a little pat to keep us going too. I have to keep reminding myself that he's OK now and I've done my job, but I sometimes feel that I'm still on the outside looking in, if you know what I mean. That's why this forum means so much to me. Dori

DoriC wrote:I have to keep reminding myself that he's OK now and I've done my job. Dori

...and that's why you're so important to this forum.

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SAGirl, have you considered running at a range of 10-10 (yes both 10) for a few nights to see what happens with your numbers? Could be you don't do well with varying pressure. Can't remember if you use ramp...based on your numbers, I'd set it to 8 or 9 for just a few minutes...that's if you need it at all. My ramp was set at 5 mins, just long enough for me to fall asleep.

Muse-Inc wrote:SAGirl, have you considered running at a range of 10-10 (yes both 10) for a few nights to see what happens with your numbers? Could be you don't do well with varying pressure. Can't remember if you use ramp...based on your numbers, I'd set it to 8 or 9 for just a few minutes...that's if you need it at all. My ramp was set at 5 mins, just long enough for me to fall asleep.

Muse, what's the difference between APAP from 10-10 and CPAP at 10? Seems the same difference to me.

DoriC wrote: but I sometimes feel that I'm still on the outside looking in

And this is another reason why your observations are very helpful to the rest of us. Cos you're on the outside.

GaryG wrote:...difference between APAP from 10-10 and CPAP at 10? Seems the same difference to me.

Someone (tweaking pressure and being a data geek) posted there is more data if run in APAP mode with range set 10-10. I need the varying pressure, so I wouldn't do this. SAGirl appears to like data and if the 'someone' is right, then SAGirl would be happier with the extra data. I dunno on this as I'd never try it...Gary, wanna give it a try and verify or disprove?

Setting min/max the same does give you FL(Flow Limitations) which have been described here as HI wannabe's. From what I gather the pros don't get too excited about them or pay much attention.

Muse's suggestion is important when you use a Respironics machine, the PB420E (and I believe Sandman too).
On those machines, CPAP mode switches you to a "CPAP report mode" that does not contain some of the data you get if you use the machine in Auto mode. By setting those machines at Auto with min=max, you get a far more detailed report.

It's different for ResMeds: The reported data will not contain snores or flow limitations, no matter what your mode. You need a ResLink hardware module (expensive and not very available) snapped onto the machine to get that additional data - and then you get lots of it.


Dori, I was just thinking yesterday how wonderful it must be for newbies to see your friendly welcoming face and hear your wisdom when they arrive here. We all need you here!
O.

ozij wrote:...Respironics machine, the PB420E (and I believe Sandman too)...CPAP mode switches you to a "CPAP report mode" that does not contain some of the data you get if you use the machine in Auto mode. By setting those machines at Auto with min=max, you get a far more detailed report.

It's different for ResMeds: The reported data will not contain snores or flow limitations, no matter what your mode. You need a ResLink hardware module (expensive and not very available) snapped onto the machine to get that additional data - and then you get lots of it.

Thanks! I remembered some but not all of the details...maybe this will help the mfg details stick

Pressure setting of over 9 and up to 16 seems significantly high to me that the upper settings could be disturbing you enough to interupt your sleep? I wonder too if now that you are consciously waking less and getting better sleep, that any arousals to disturb you are now noticed by you and your body even more, so you still feel tired? In my tests, I was trying to seek the lowest pressures possible for good results, as higher pressures were just far more difficult for me to sleep through and they caused more leaks more often and I needed a tighter mask to prevent leaks, which was also not easy to get used to and so was disruptive. So I experimented with lower pressures and it always seemed that my 90-95% range was at the lower numbers, and if my APAP was set at a higher pressure range, it would still sometimes go to the higher end presumably to respond to an apnea event, but maybe it didn't need such a high pressure, which usually woke me up or caused a leak. In the end I settled with using a pressure range of 8-9 on APAP which has been the best so far for reduced events. Sure it misses a few events, but so did all higher pressures, narrow ranges at higher pressures and so did a straight CPAP pressure at various settings. But this too was before I came upon what causes "most" of my events, which are positional apneas, or apneas caused by being on my back, partially, or completely, or anywhere in between to have my airway able to collapse enough to cause an event.

One thing that you said is that you now only seem to wake up if your neck and or shoulder are causing pain. Now why would that happen? Perhaps that is a clue to some sort of positional problem that is causing arousals. My other thought was to video tape your sleep for a few nights to see if that provides any clues? For me, I learned that positional apneas are my main problem. Last night for example, I woke 2-3 times, partially on my back, twisted up a bit, and or just my head turned onto it's back and my AHI when I checked at my bathroom break was also up, so back position = higher AHI = arousals. I have no idea why my body or brain is so insistant to get onto my back, where it should know that sleep and apneas are the worst for me. It also tells me that I need to a bit more work to my anti-back pack, though most nights it works really well to keep me completely off my back and greatly reduce events, arousals which = better sleep which = a good day. When I can get a video recorder, I hope that it might provide me with my some more clues as to what is going on to still keep some hypopnea events and some higher IFL's. Without video and sound evidence, I'm still guessing at what is causing the events that my software is reporting and that I am feeling.

So to sum up, test a reduced pressure range and try to somehow monitor sleeping positions for arousals / sleep disruption?