UARS, low numbers bad sleep, MMA, now on CPAP

[patrissimo]

P.s watched the papcap fitting video: http://www.youtube.com/watch?v=5CyhzcNaCRI. The papcap doesn't fit on my head like in the video, it's too big (I have the small-medium). I also wasn't using the chinstrap right, I was only holding my jaw shut and not moving my lower lip up, I think I had backwards tension instead of forward tension. The instructions are so bad, they really need a bunch of diagrams! I will try it again with forward tension and see what my leak/AHI are.

Using the nasal pillows has helped me appreciate my FFM, it feels much roomier & more comfortable, although I don't like how it presses on my face. Last night I ordered a Mirage Quattro to have a newer FFM alternative. I was also able to wear the Swift FX for longer last night before switching back to my FFM, though I don't think it was fitted quite right. I tried taping my mouth, but still got chipmunk cheeks until I wrapped an ace bandage around my mouth in addition, horizontally, which added enough pressure on my cheeks to keep them in.

[patrissimo]

patrissimo,

I have your type of history with a UARS hyped-up nervous system. I didn't do well at all with my first mask, the Resmed FX. I was new to CPAP and didn't know the difference, but the nose pillows were constraining my breathing. It got worse later at night after being in bed for a while. Sometimes I would remember waking up and futzing with the mask, but I think most of the time I would be sleeping (poorly) through it. I believe it just compounded my experience of sleeping airway restriction.

That's really interesting to hear, glad to know I'm not the only one.

I started using an Aloha mask, which my DME Apria was able to special order. According to some forum posters here, it is similar in design to the Resmed Swift LT (I hope I have the Resmed names right). The Aloha nose pillows are bigger (in medium) and stiffer than Resmed's, and actually help hold my nostrils open. Also, for me anyway, the nose pillows don't collapse and get out of alignment as much with this mask. I put a soft fuzzy sock on each side strap, along my cheeks, to keep me from having residual dent marks in the morning. With the socks it is actually pretty comfy, especially when I sleep on my side.

Cool, I will keep this option in mind. Looks like the Aloha has very configurable nose pillows.

Finally, you probably know that with a UARS person, things that wake you up frequently are likely to mess up your hormones quite a bit, but won't show up as AHI.

Before going to ASV, I would sometimes have my highest leaks and highest AHI when it felt like a relatively good night. I decided it was because I was actually sleeping through things for a change.

Another thing to think about - Dr. Krakow would look at the shape of your breathing waveform to see if it is normalized. You can check this yourself once you get set up with Sleepyhead.

So did you find that ASV made a big difference? I have been thinking of getting an ASV machine, but am unsure how much it will help someone like me on low pressure with no central apneas. I will search the forums and read your posts about it. I am going to get a new machine in the next couple days so I need to decide soon!

I can't wait to get high-res full night data! And to get RERAs or whatever else they detect nowadays in addition to As and Hs. If my breathing looks normalized I will focus on insomnia reduction, if it isn't I will focus on airway / breathing. Will it be easy to tell in Sleepyhead?

[Pugsy]

Do other people find nasal pillows feel like breathing through a straw? Do I need higher pressure (than 8mm)? Or do I just need to get used to it? How long does it take? I'll keep trying it, but it seems like maybe I should get a nose mask and/or full face.

What size nasal pillow did you try? You might try the next larger size if it is available. The openings are a bit larger and air will move easier....less like breathing through a straw.

Loosen the straps. Most people do tend to tighten them too much (will cause the end of the nose to be sore) because it sort of pulls the end of the nose upwards. Most often the top strap is the offender. If you look in the mirror and your nose looks like piggy nose then the straps are too tight.
Also when the straps are too tight the pillow itself sort of compresses and is not able to inflate like it should and this contributes to the breathing through the straw feeling because there isn't enough air movement to be comfortable.

If you are experiencing anything more than very minor tenderness at the nostrils with nasal pillows....straps are too tight.
I have tried and used multiple nasal pillow masks (only thing I have ever used) and this holds true with any brand.
They don't have to be tight to hold the seal. They need to be able to inflate. I can put my entire hand under my straps (granted I have small hands) and I can remove and put my mask on pretty much with one hand and even just a couple of fingers if I had to.
Do your final mask fitting adjustments while laying in bed. The nasal pillow masks are so light that the weight of the short hose can pull on things and what seems just fine sitting up can be too tight when laying down.
Once adjusted just right there is no need to alter adjustments with removal or applying the headgear. Just use the stretchiness of the straps.

Can't help you with Pap cap or chin strap stuff. Don't use them.

Cheeks inflating...chipmunk cheeks..caused because the air goes up the nose and down the airway and tries to exit through the mouth..premature exit of course and unwanted. The trick is to use the tongue as a barrier. Easy to do while awake (just plant the tongue in the roof of the mouth) but when we go to sleep the tongue goes to sleep on the job and will fall away from the roof of the mouth. Usually with time, patience and experience the tongue learns to stay put.

[patrissimo]

Hey all. I am still feeling bad, but my CPAP & Zeo numbers are starting to trend in the good direction, and I've had 2 nights that felt noticeably better, one of them where I even felt better the next day. So I'm optimistic that things will take a turn for the better. I got a new Mirage Quattro FFM last night, which is much comfier and seals much better than my ancient Mirage Full. My leak was 0.0 (so presumably the leak is less than the difference between the old and new masks default flow rates), and my AHI has been < 2 for 6 of the last 7 nights.

I'm giving up on nasal pillows for now, as I see the benefit as being increased comfort, not better therapy, and I just don't have the energy to risk my therapy quality getting used to a nose mask, with all the complication of mouth taping and such. I'm going to experiment with slowly increasing my minimum pressure, and I'm eagerly awaiting my new S9 APAP from Mark with full night data.

I thought y'all might be interested in the continuing trend of my CPAP/Zeo numbers. Specifically, the correlations here:

What vs. What R R^2
AHI vs. Deep % -0.304 0.09
AHI vs. REM % -0.640 0.41
AHI vs Deep+REM% -0.731 0.53
Min Press vs. AHI -0.492 0.24

I only have 14 data points, but most of these correlations are still high enough to be significant at the 0.01 level (translation: the relationship is strong enough to not be chance even with just 2 weeks of data). "R" here is the correlation, and R^2 means "The % variation in each variable explained by the other". In other words, 53% of the variation in my % time in Deep + REM stage sleep (from the Zeo) is explainable by my AHI (from the CPAP), which is quite high. And as I mentioned, my AHI has been steadily trending downward as I experiment with my setup, so while I feel like shit, I'm very hopeful that I'm getting better sleep and will feel better over time.

Also, at least at the pressure range of 5 - 8 that I've tried, the higher my pressure the lower my AHI. (Though I've found leak rate & mouth taping seem to make a big difference on AHI too). For fun, here are some graphs:



You can see how strong the relationship between AHI and Deep+REM is.

[Jay Aitchsee]

Hi Patrissimo,

Interesting work.

As you know, I've done some work along these line, too. viewtopic.php?f=1&t=85585&st=0&sk=t&sd=a#p778673 At your suggestion, I did do some charting using % deep instead of deep. The result was smoother and the trend line was a little different so it gave the chart a little different perspective. It was interesting to me, but I didn't see enough difference to warrant posting.

I have a question about your methodology. Zeo out puts the following: ZQ, Total Z, Time to Z, Time in Wake, Time in REM, Time in Light, Time in Deep, and Awakenings. What are you using for a denominator to determine your percentages of time in REM and Deep? Since Total Z, the obvious first choice, doesn't include time in Wake, I just wondered if you were adding time in wake to it? And what you think the implications of either using or not using Time in Wake might be?

Jay

[RestedRebel]

Do other people find nasal pillows feel like breathing through a straw? Do I need higher pressure (than 8mm)? Or do I just need to get used to it? How long does it take? I'll keep trying it, but it seems like maybe I should get a nose mask and/or full face.

I find the nasal pillow so comfortable and love that they make me breathe through my nose because I used to have a bad habit of mouth breathing. I will admit that I do suffer from anxiety and took an anxiety pill for the first week until I got used to using the nasal pillows and machine. Now I look forward to using them. It's a relief to be able to use them because my nose used to be perennially stuffed up and now with my machine and its humidity, my nose is comfortable, not only at night but also during the day time. That has been such a blessing to me in addition to feeling rested, happy, and energetic during the day time.

[patrissimo]

I have a question about your methodology. Zeo out puts the following: ZQ, Total Z, Time to Z, Time in Wake, Time in REM, Time in Light, Time in Deep, and Awakenings. What are you using for a denominator to determine your percentages of time in REM and Deep? Since Total Z, the obvious first choice, doesn't include time in Wake, I just wondered if you were adding time in wake to it? And what you think the implications of either using or not using Time in Wake might be?

I just use total Z. I actually first tried a metric of (REM minutes + Deep minutes - wake minutes) / Total Z, as a sort of ZQ-like score, but including wake minutes totally messed up the relation, though it seems more accurate to divide by (Total Z + Time in Wake), as you suggest. I do calculated a "corrected total time" of (Total Z + Time To Z + Time in Wake) that I compare to my CPAP usage time to determine CPAP compliance.

Partly the issue is that my wake time is so variable & externally influenced - I have a few nights in my data where I was awake for an hour+ (once four hours!) because my kids were sick, and they happened to be low AHI nights, so they mess up the relationship. If my wake time varied from 5-20 minutes and was all related to my sleep quality and breathing, I would expect to see a sensible relationship, and I would include it.

[Jay Aitchsee]

mmm, interesting. Since (Total Z = Deep + REM + Light), then (Time in Deep + Time in REM) = (Total Z - Time in Light), or (D+R=Z-L)
so that your fraction, (D+R)/Z, becomes (Z-L)/Z, indicating that the resulting percentage is inversely related to time in Light - I think.
Now, I think what this means is that since you've shown that AHI is inversely related to Deep + REM, then AHI must be directly related to Light. Which kind of makes sense, but is a little hard to wrap the head around at first. Thinking about it makes my head hurt.
Jay

[patrissimo]

That's right Jay. If we just ignore wake time, the Zeo partitions all sleep into Deep, REM, and Light, so any increase in deep & REM comes at the expense of light, and vice-versa. Respiratory arousals kick us out of those physically (deep) and mentally (REM) refreshing stages into light sleep (and brief awakenings).

[patrissimo]

In case anyone finds this thread searching, let me link it to my sleep data thread w/ my SleepyHead graphs:

viewtopic.php?f=1&t=85897&p=781978#p781742

[patrissimo]

I'm getting pessimistic about APAP working for me . My AHI is consistently below 1 on my new S9 Autoset APAP, yet my EDS is just as bad. Overall I feel like I'm sleeping a little better on the CPAP (a month in), I'm noticing that I dream more, and my Zeo shows slightly more deep sleep than before (21% vs. 16% average). But I don't feel any less tired and I still wake up 3-5x every night and use the bathroom (nocturia = untreated SDB, right?). My few nights of SleepyHead graphs show substantial flow limitation, sometimes corresponding with REM sleep.

I'm not going to give up on xPAP, but I'm I wondering if it's time yet to explore other things. I guess it's probably just too soon to tell. And I did feel worse over Christmas when I spent 5 days without CPAP. But I don't feel anywhere near good on cpap, just slightly less terrible. I guess I'm wondering which of these is most likely true:

1) CPAP is curing me, I just need to be patient, it takes time to work. (But if it's curing me, why do I wake up so often?)
2) CPAP will cure me if I get the pressure/mask/etc right.
3) I need BiPap/ASV and higher pressure to round out my breathing curves (the Krakow theory).
4) My EDS is caused by SDB, but an air splint won't cure it. (In which case what do I do? Not many surgeries left. Dental device?)
5) My EDS is not actually caused by SDB (to convince me of this I'd need to have a treatment that regularized my night time breathing, and not sleep better, and not feel better).

In terms of my current plan, I'm:
1) Going to continue increasing my pressure as tolerable, to see if my events and/or FL decrease or I feel better.
2) Trying to see if I can rent an ASV or BiPap for a month from a local DME.
3) Considering a "virtual second opinion" or visit to Maimonides to see Dr. Krakow.
4) Considering sleep restriction therapy (perhaps my bad sleep is insomnia, not just SDB).

[SleepingUgly]

My AHI is consistently below 1 on my new S9 Autoset APAP

But your RDI may be high if your FLs are actually RERAs.

Why don't you go to Stanford and get titrated?

[patrissimo]

My AHI is consistently below 1 on my new S9 Autoset APAP

But your RDI may be high if your FLs are actually RERAs.

Why don't you go to Stanford and get titrated?

I looked back at my old sleep studies, all at Stanford, and none of them measured RERAs. Isn't that weird? I thought Stanford discovered UARS and RERAs, and they don't even measure them.

Next meeting with my sleep doctor, I will discuss getting titrated at a lab that can measure RERAs and take them into account in the titration. If that can't be done here, I will look into going to Maimonides to see Dr. Krakow, based on the excellent reviews he has received from users here who have tried his clinic.

[SleepingUgly]

Stanford's RERA is another lab's hypopnea. I'm pretty darn sure that they are not overlooking RERAs.

[4betterO2]

Do other people find nasal pillows feel like breathing through a straw? Do I need higher pressure (than 8mm)?

I've read that nasal pillows do cause more resistance than other masks. The Respironics machines have a setting that you set for different types of masks and it would compensate for the difference in pressure need. Not sure how well that works. I hope someone will answer your question, because I also would really like to use nasal pillows, but I need to make sure what the pressure requirements are.
I would like also to find a good solution for keeping my mouth shut (don't laugh) to use nasal pillows, otherwise I can only use a FFM mask...