Can I have my own thread?

[idamtnboy]

I'm concerned about making changes night to night. Doesn't give time for things to settle down.

Well, if we accept that premise as a rule rather than exception, then PSG titrations are a bankrupt proposition as a rule rather than exception. I agree that multiple nights at one setting can help with data interpretation amidst variability.

The fact that a one-night PSG titration could very well be suspect (bankrupt is a bit severe I think) is probably the reason my sleep doctor always prescribes an APAP, and if my case is typical, puts the unit into APAP mode, has the patient come back after one month with the machine in tow, looks at the data, and sets a CPAP pressure.

Judging from many comments from users here in the forum I think PSG titrations are often suspect. But, on the other hand, a good share of us on this forum are anal retentive about leaks, AHI, pressure, and the whole thing about CPAP therapy to a far greater degree than may be medically and statistically justifiable!

In the manufacturing world there is the management tool known as process control, measured by statistical process control methods. The underlying premise is that in the real and natural world of manufacturing all processes have some degree of variability inherent in them. There is no such thing as absolute. The control system relies on measuring the process for x consecutive number of times every nth increment of quantity or time. Typical numbers might be 5 times for every 100 pieces. This reliably captures the variability from piece to piece, and slow changes over time in the overall process. The average and spread of a data group is compared from group to group. I argue that the same approach can be used to measure physiological symptoms like blood glucose levels, AHI, and who knows what all. I am now checking my BG level every day for one week every six weeks. I will probably start doing that with my sleep parameters before long. The sleep doctor who says a one night PSG titration is accurate is like some engineers I knew one time. They had the attitude, "A single data point the universe describes." Ridiculous.

SU, sorry about hijacking your thread!

[SleepingUgly]

I agree that a sampling of data on several nights at a given pressure will be more informative of my pressure needs than any one night.

I'm concerned about making changes night to night. Doesn't give time for things to settle down.

But it's not that things need to "settle down", as much as they need to settle out... I probably would benefit from data collected over several days, particularly once I've acclimated to a particular pressure. But, for example, if I can tolerate a pressure of 7 and not leak with it, not wake up more with it, etc., I don't see much point to hanging around at a pressure of 6 hoping that my FLs will improve at that pressure. If my FLs are bad at 6, assuming I don't have a cold or something transient, I don't think they are going to improve a week later at 6. But if I am waking up too much at 6, there may be some benefit to hanging out acclimating to 6 and not rushing it to 7...

That said, I think I will try 7 tonight anyway.

[SleepingUgly]

This thread is really helping me! I would not have used CPAP every night since I started it but for this thread. You guys are great! Thanks so much.

[-SWS]

The fact that a one-night PSG titration could very well be suspect (bankrupt is a bit severe I think) ...

Exactly why was that severe, idamtnboy? You go on to cite a vague but decent argument that.... a one-night PSG titration might well be a bankrupt proposition. You even end your wonderful rhetoric with the word "ridiculous". Here, if you won't come out and say it I will:

A one-night PSG titration might be a bankrupt proposition. So what's the purpose of a pressure titration?

like some engineers I knew one time. They had the attitude, "A single data point the universe describes." Ridiculous.

Post singularity? Ridiculous. So how many data points is a 6,300 breath PSG titration anyway?

This thread is really helping me! I would not have used CPAP every night since I started it but for this thread. You guys are great! Thanks so much.

EXCELLENT!

[robysue]

This thread is really helping me! I would not have used CPAP every night since I started it but for this thread. You guys are great! Thanks so much.

Give yourself a good pat on the back too SU: You're doing the hard work of making the decision to put the mask on and keep it on every night! Best of luck

[idamtnboy]

The fact that a one-night PSG titration could very well be suspect (bankrupt is a bit severe I think) ...

Exactly why was that severe, idamtnboy? You go on to cite a vague but decent argument that.... a one-night PSG titration might well be a bankrupt proposition. You even end your wonderful rhetoric with the word "ridiculous". Here, if you won't come out and say it I will:

A one-night PSG titration might be a bankrupt proposition. So what's the purpose of a pressure titration?

Bankrupt implies it has no value whatever. I think it has value in that it gives a pretty good picture of what needs to be done to handle the conditions of that night, but the conditions of that night may not accurately reflect the average of long term conditions. It gives a good starting point for defining the parameters of the therapy.

like some engineers I knew one time. They had the attitude, "A single data point the universe describes." Ridiculous.

Post singularity? Ridiculous. So how many data points is a 6,300 breath PSG titration anyway?

6300 repeat measurements of yesterday's bad dinner, or of yesterday's fight with the spouse, or yesterday's phone call about the new job, or yesterday's anxiety of facing the PSG,.... You get the picture. The 6300 data points paint a very good picture of one point in time, of one set of personal circumstances.

[idamtnboy]

This thread is really helping me! I would not have used CPAP every night since I started it but for this thread. You guys are great! Thanks so much.

Thank you for the feedback. To help someone is good. To know that that someone was helped is also good!

[-SWS]

Interestingly some UARS researchers now suspect daytime UARS symptomology MIGHT be related to yet other stressors besides/in-addition-to RERAs.

What are you referring to here?

Recall researcher Avram Gold's recent presentation in which he postulates sensitivity to flow limitations as "stressors" that conceivably activate the hypothalamus/pituitary/adrenal axis and limbic system. Dr. Krakow claims improved patient outcomes when treating FL irrespective of RERAs. And here Dr. Park summarizes both microarousals and PSG-immeasurable subcortical arousals as possible sleep stressors irrespective of PSG-measurable RERAs:

Many of the RERAs that are described (respiratory effort related arousals) are probably measuring these short micro-obstructions and arousals, but you also see many non-respiratory related events. One possibility (one that Dr. Guilleminault shares) is that there are reflexes in the throat that senses when you're about to obstruct which sends a signal to the brainstem which loops back a signal to tighten your throat/tongue muscles because you're about to obstruct. This happens behind the scenes, with these signals not ever reaching the outer brain cortex (where we measure EEGs). So you'll have many of these subtle deep sleep interruptions that don't ever how up on a test.

http://www.apneasupport.org/post-141513 ... isturbance

On the other side of the FL coin, I believe mainstream sleep medicine currently treats FL only when associated with RERAs---if they elect to measure and treat FL at all (optional according to AASM best practices).

Unfortunatley many patients with daytime UARS symptomolgy are ALSO sensitive to pressures beyond 6cm to 8cm according to UARS researchers and practitioners.

Really? Have you seen those numbers cited?

Bear in mind the medical community currently maintains widely differing views and definitions of UARS. This white paper summarizes Christian Guilleminault's early findings that low pressures were most suitable to treat his UARS phenotype patients:

Treatment with CPAP at low pressures (7) reduced the arousal index to an average of 7.9, all patients ending up in a "normal range" of less than 10

http://www.talkaboutsleep.com/sleep-dis ... ract13.htm

That 7cm treatment pressure might have more to do with offsetting disruptive negative esophageal pressure typically terminating around 6cm in Guilleminault's UARS patients versus much higher negative esophageal pressures in typical OSA patients. Alternately it might have to do with pressure-tolerance thresholds associated with general airway hypersensitivity. If UARS is an airway hypersensitivity disorder, then that UARS-suitable 7cm treatment pressure might well have to do with both factors. But Guilleminault hypothesizes along the lines that UARS is a distinct syndrome from OSA---and that it entails hypersensitivity versus OSA hyposensitivity. Speaking of airway hypersensitivity in UARS patients:

It’s not surprising that you can’t tolerate CPAP. Even Dr. Guilleminault, the sleep medicine pioneer at Stanford who first described UARS (and treated with CPAP) now admits that UARS patients can’t tolerate CPAP. It’s thought to be due UARS patients’ hypersensitive nervous systems.

http://doctorstevenpark.com/whats-a-deviated-septum

Some UARS researchers suspect UARS sleep-related symptomology and CPAP pressure intolerance might BOTH be related to airway or blood-gas hypersensitivity.

What do you mean by this?

That UARS hypersensitivty discussed above just might be attributable to stretch/closure related receptors---or even chemoreceptor hypersensitivity that is associated with blood gas transients. I think the former makes more sense.

[SleepingUgly]

Last night, at 7cm EPR 3, I slept a little more soundly probably because I was tired from the bad night before, but I had aerophagia and had to terminate CPAP early. My FLs don't look as good as I'd hoped (compared to how they looked when I tried these settings back in January).

I am not sure whether I'm having aerophagia because I'm opening my mouth, in which case sealing my mouth would help OR if it's unrelated, in which case sealing my mouth would be a disaster (burping impossible).

[SleepingUgly]

Aerophagia night (last night):

[SleepingUgly]

Last night I went down to 6cm and no EPR, and didn't have aerophagia. But my mouth kept opening and at some point I felt like my nasal pillows had turned to warm, slippery mush and they were leaking. I tightened the straps, but that didn't do it. I'll start another thread about the pillows.

[-SWS]

SU, bump for status.

Fellow hoseheads, aerophagia, mouth leaks, and mask discomfort are SU's biggest issues right now. In addition to getting over those hurdles, SU hopes to experimentally address her FL with higher pressures----hoping to alleviate some of her Excessive Daytime Sleepiness (EDS).

Given all these simultaneous CPAP challenges, I bet SU would love to hear ideas and opinions about an overall strategy toward tackling the aerophagia, mouth leak, mask discomfort, and FL pressure-treatment hurdles. To get the discussion ball rolling about SU's overall strategy of tackling so darn many hurdles, I'd like to resurrect ozij's ideas from page 3:

Since you've been doing a lot of sleeping withoug cpap, if it were me I would leave the pressure as is (raise to 5 at most), and focus my attention on very careful and systematic problem solving /habituation in the area of mask comfort: including trying different pillows, and different ways of routing the hose.

SU, what have you tried in order to make your masks more comfortable? Your collection of wounds makes it sound like you may need some advice in that direction.

Do we think an incremental or overall strategy can be beneficial in a highly challenging CPAP-acclimation case like this?

Bump for ideas/discussion... Rank newcomers are very welcome to share their ideas or experiences.

[Slinky]

For what it is worth, I call "the air escaping in little "blips" from my mouth" the "lip flutters".

And, I can't burp in my full face mask. But my bi-level pressure is running 10 to 14. Maybe I could at a lower pressure. I don' know.

As we were trying to raise my pressure last year I encountered aerophagia so bad I had to quit PAP entirely and take Dexilant daily for 6 to 8 weeks before starting back on PAP at IPAP 10, EPAP 5. I stayed at that setting for 2 weeks before raising just 1 cm at a time once a week - and if I encountered aerophagia I dropped back down that 1 cm for another week before trying to raise it again. Sometimes I had to stay at a pressure change for two weeks, but always at least one week.

Due to Crohn's disease I have absolutely NO TOLERANCE for bloating and nausea. None. So maybe I am more extreme than you, SU, in what I can and can not tolerate.

[BleepingBeauty]

The first thing I would do is solve the mask issues. Since none of us can hope for effective therapy without a good mask that fits us well, is comfortable and doesn't leak excessively, the mask is priority 1. Experimenting with various pressures won't be very productive if the mask is not working well. That might mean a different mask altogether.

First, I'd try replacing the Swift pillows with the Breeze pillows (as in the Lab Rat Award link I posted in her other thread). The Breeze pillows not only appear to be sturdier than the Swift, but two different sizes can be utilized to match SU's asymmetrical nostrils. If the pillow-leaking problem is solved but mouth leaks continue (and a chinstrap or mouth-taping or other fixes aren't a viable option), then I would go for a FFM like the Hybrid. The mouth is covered, and the nasal pillows can be cut apart to utilize different sizes for each nostril. Bonus: The mask comes with three sizes of mouth cushion and three sizes of pillows, so pretty much anyone can get the fit they need.

If it were me, I'd keep the pressure at a level that didn't produce aerophagia and work on the mask issues until they're solved. As always, one thing at a time, and keep the variables to a minimum. Fix one problem, then go on to the next.

[Slinky]

Right on, BleepingBeauty. Why didn't "I" think of that!! Too logical for me, I guess.