last few nights have sucked :(

pandatx wrote:they originally sent me home with the S9 Escape and told me I didn't need the Autoset because Dr Moore doesn't look at anything besides the AHI number when you come in for follow up. If he went by that, my numbers are totally acceptable even though I'm having shit sleep and am exhausted.

Unless you were give the S9 Escape Auto I don't know where they were going to get even the AHI numbers because the plain S9 Escape gathers zilch AHI. They could tell the doctor that you were getting so so number of hours of sleep and since we know that was lacking...everyone would tell you "give it time". and after so much time and you still not doing well guess what they would say...."gosh, we don't know why you feel like crap" " Let's get another sleep study" Where they would likely again say "gosh, this should be a good pressure to use" and prescribe the same thing and tell you to "give it more time"...and this would happen only if you hadn't sh.t canned the whole thing by then because it wasn't working.

So for any newbies following Amy's story...her experience is a prime reason that we harp on FULL efficacy data machine and also why I prefer the S9 or the PR S1 full data machines....access to the flow rate graphs that you are seeing the examples of here. Not all the other full data machines will gather flow rate. If it isn't gathered it can't be looked at.
The S9 Escape gathers hours of use only. The S9 Escape Auto will gather overall AHI (no breakdown into categories) and pressure numbers...that's it.

Granted not everyone has this problem and runs into this level of difficult BUT IMHO everyone should have a machine that offers this level of detail just in case because we never know what might be going on. Get a good machine to start with and help level the playing field for figuring out what might be going on.

Thank you Mollete for the explanations with pictures. Hugely helpful.

One slightly downer note, though:

The >7-day ResMed Waveform Delete Rule does not allow breath-by-breath analysis of those first few days, but what the hey, "Improvise" is our middle name.

Next, we need some samples of SWJ to show where sleep fragmentation probably (don't forget, we're still guessing) is.

That said, there are also some fair stretches of continuous "sleep".

But in a way, all these FLs and Train Wreck Sleep Architecture are a good thing. It is now an "opportunity".

mollete wrote:The >7-day ResMed Waveform Delete Rule does not allow breath-by-breath analysis of those first few days, but what the hey, "Improvise" is our middle name.

Yeah, a definite negative there and even SH doesn't keep it past a number of days even if a person downloads every day.
Highly annoying.

Right now I have no flow rate in SleepyHead older than March 18 and after I download today I won't have March 18.
Seems safe in ResScan though.
I guess I need to get with Mark and see what is going on with the flow rate going AWOL in SH after a couple of weeks or so.

Mollette, you crack me up. Okaaay....my train wreck architecture is a good thing, lol.

Seriously, thank you. I at least feel like someone sees something going on that explains why I keep saying I'm not sleeping but the numbers in the morning don't really show that. I hope to God that treatment with the Graves Disease helps with this. If I can get that settled down and then be able to get the CPAP benefit I bet I'll feel so much better. I'll keep plugging away!

Yes! It is such a lesson to other newbies! OMG, can you imagine what I'd be stuck with if I hadn't had you guys and then hadn't had the nerve to stick up for myself and be the pain in the ass that I had to be to get what I needed? I'd have the S9 Escape Auto. I would not have my DME/RX to get my equipment anywhere but from the doctor. And I wouldn't have my full data/report. I've had to fight every freaking step of the way. All while I feel like crap. But it was necessary. Look at how much help I've been able to get b/c I listened to the advice here and had the support and encouragement to go along with it.

And, I have to say, I am a pretty determined little thing. I don't like getting bullied. So every time they pushed me to shut up, I just pushed back harder. You have to take control for your own health. I'm running into it again now with the Graves. Getting the right tests. Getting the doctor to listen to me and not shove me into the cookie cutter radiation. Yeah. I'm tired. But determined

mollete wrote:

Drowsy Dancer wrote:

mollete wrote:

mollete wrote:Or if one has OSA with concomitant nasal obstruction being treated with xPAP, wear one under the mask?

That being said, one might postulate that this proposed benefit would not be realized when employing a pillows-type interface.

Not sure why it wouldn't help with pillow interface. Explain, please?

I envision that pillows would inflate compliant areas, where a nasal mask, applying equal pressure intra- and extra-nasally, would not.

Thank you for taking a moment to answer this in the course of the much more important efforts you are making on Amy's behalf. <waves to Amy and Pugsy, resumes lurking>

Dancer, I am so humbled by the help that I've gotten here. I wish I could express it adequately. I haven't taken one moment of it for granted. Every reply, every warm wish, every private message, and the amazing amount of time that Pugsy and Mollette have spent helping me. I just could cry. I feel people's caring and I just shake my head and hope that I can someday be able to give someone else what has been giving to me this past few weeks. You all have become a little family to me. I'm so grateful.

OK, so...

Sleep quality can be evaluated by a number of factors, one of which is the number of arousals that one has, measured as an index (events per hour). "IMHO", problems occur at >100 (or an index of like >15). "Problems" would be EDS, although this it turn may not occur in some groups like insomniacs or thyrotoxicozoids (because they're always going 100 miles an hour).

A review of preliminary data from the NSPGs show:

Diagnostic Study
TST 312.5 minutes for SE 80.5%
60 hypopneas and 16 RERAs for an RDI of 15

130 arousals for an index of 25

Titration Study
TST 250.0 minutes for SE 60.2%
2 central apneas, 2 hypopnea and 16 RERAs for an RDI of 5

125 arousals for an index of 30

Although Arousal Index has gotten slightly worse, this is still quite in keeping with what has been discussed so far:

Is the problem sleep fragmentation or sleep-related breathing (UARS)? If it's UARS, is it being effectively treated (and I believe if we had Barry Krakow in here, he might have a comment or two right about now)?

This is all really confusing to me. I don't understand what you are saying? Sorry to sound dumb...but I'm lost. Are you saying "no apnea"? Or that I really don't need cpap at all? Or do I keep working at it while trying to get the Graves under control? Its all just a big jumble to me....and my emotions are all over the place right now (Graves) and I sort of feel like crying. How can they diagnose apnea if its not apnea?

Dear Panda,
Thanks so much for your candor and honesty!! I feel the same way. We have so much to learn and we are in the midst of geniuses here Let's hang on though because we will get better and life is wonderful.

Hang in compadre
Dreaming

As an aside, and in response to Pugsy's question, the Oxygen Desaturation for Diagnostic was 1, and Titration was <1, so desaturations were not an issue, and most/all of the hypopneas were scored based on associated arousals.

Simply put, getting the Arousal Index down to < 5.0 and Sleep Efficiency > 90% (I know, everybody says > 85% but it really needs to be >90%) is target. For the moment there are 2 working diagnosis (SDB and Graves')(insomnia could also be in there but let's hold on that for now). You've got a ton of FLs. They may be creating issues and perhaps should have been given a more robust challenge in Sleep Lab to see how they respond (i.e., the arousals disappear and/or waveform becomes rounded).

Or, as previously noted (and if the FL does not respond to challenge), then the arousals are truly spontaneous, may be due to Graves' and you need to shoot the thyroid.

At some point, alternate treatment for SDB might be considered because you certainly fall into that category (mild to moderate SDB and no real desaturation).

Okay....so.....(trying to comprehend)...what is my next step? How to proceed? do I change anything at all? Mask, settings, etc? See a cardiologist? Or do I keep plugging along while waiting for the anti-thyroid drug to kick in (and hopefully be tolerated). Or do I stop CPAP while waiting for that?

Hey, I know none of you guys is a doctor, giving medical advice. I just appreciate the guidance and suggestions so much. Do you know how much I wish that the doctor had helped me a little bit more, you know?

Thank you for the help, again.

xo
Amy

Well, first of all you really should get your physician involved with the treatment plan because arbitrary setting changes ("Dial Wingin"") won't look good if/when you need him for something (let's say you need a prescription for BiPAP because that's a good machine for comfort in failed CPAP users). These guys get crazy when they see someone has DWed their settings all over the place, and at that point they're just gonna say "See you didn't do what I told you so it's all your fault!" So let's work him in and at least let him think he's being helpful.

Further, improvement may take considerable time, with treatment for both of these entities taking a while to set in.

Arguably, you may be pressure intolerant (as noted in the Titration Report), so an aggressive pressure attack (as might be proposed by Krakow) could be self-defeating.

Admittedly, I have heard more than one big gun say "If a patient with mild to moderate SBD (RDI<20) feels much worse with treatment, then what's the point?", but I think it's way too early to go down THAT road yet, and you need to at least see what happens when the FLs get straightened out.

Inevitably, I start every sentence with prepository adverb.

Finally, if you get the impression that mollete does not participate in DWing, that is correct.

You're funny

Okay, well I have my 30 day appt with him in about 10 days or so. I'll just keep that and then see what he says. Since all he does, though, is look at the AHI number (seriously, that's it), maybe some of you guys here can help me make up a list of questions to ask him when I go?

I think we should still try to look at the raw NPSG data (both studies) though. Specifically, looking to see if the titration was sub-optimal.