Questions/Rant About Periodic Breathing and Kaiser

[Tunapalooza]

I was diagnosed with sleep apnea in 2007 and have been a compliant CPAP user ever since. I was seen by a medical doctor and had the sleep study done in a laboratory. Aside from replacement supplies and replacements for defective machines, I never had any interaction with my doctor or the DME. In retrospect, the DME ought to have collected data and provided it to the doctor. Water under the bridge.

At the beginning of the year I started with Kaiser insurance. My new doctor referred me to the Kaiser sleep clinic. I brought my memory card to my first appointment. I don't recall any periodic breathing data, but my AHI was 5.5 (average for the past year, I believe). I don't think 5.5 is too bad. For reasons that escape me, Kaiser insisted on an in-home sleep study (Itamar device) without the use of my CPAP. I would have thought that a patient with a six-year history of sleep apnea and a current AHI of 5.5 with CPAP treatment could be re-diagnosed without a sleep study - or at least have it done in a lab. It was a miserable experience. AHI was 77 and O2 saturation dropped to 81%.

I now have a Respironics "System One" and the additional data it provides. I regularly see high AHI and periodic breathing. On my most recent visit, the average of the data for the past month showed an AHI of 9.3 and periodic breathing of 12.2%. Since this is an average, on some nights both numbers were much higher.

My experience at Kaiser is that patients don't see a sleep doctor. Instead, the sleep clinic is staffed by respiratory therapists. I don't think that this is inherently wrong, but I'm not certain that these particular therapists have demonstrated sufficient judgment and knowledge. Aside from putting me through an entirely unnecessary, debilitating, and potentially dangerous sleep study, the therapist pronounced my numbers - 9.3 and 12.2% - as "pretty good since I started with an AHI of 77." I had to point out that I presented with a treated AHI of 5.5. I also expressed concern about the high level of periodic breathing.

Since I declined to be brushed off, I was given an assortment of new masks to try. The therapist's theory is that the numbers are distorted by mouth breathing. As a good soldier, I am dutifully trying the masks and documenting the resulting AHI and periodic breathing. However, I have exceedingly little confidence in the therapist responsible for my treatment, so I'd like to get some feedback from the folks here about my current path.

Is monthlong average AHI of 9.3 and periodic breathing of 12.2% "pretty good?"
Is mouth breathing a likely explanation?
What else should I be doing?
How many of you are treated by respiratory therapists rather than medical doctors?

Thanks in advance.

Marc

[kaiasgram]

Hi Marc,

The way -- the only way -- I finally got to see an actual sleep doctor at Kaiser was through a referral from my primary care provider. But not until after I'd gone through the at-home sleep test and the week-long at home titration, and had been struggling for weeks.

Even knowing firsthand how Kaiser does sleep medicine, I'm kind of appalled reading about what they put you through.

I don't know about your periodic breathing number but your average AHI of 9.3 means not yet successfully treated. I wonder if your primary care person can advocate for you and get you in to see one of the sleep doctors. I don't know where you are but feel free to send me a PM if there's any way I can help you navigate the KP maze.

[cosmo]

How many of you are treated by respiratory therapists rather than medical doctors?

I have the same Kaiser insurance and have never seen a real sleep doctor. I haven't been treated by them, its mostly self treatment/assessments.

[Mary Z]

I see a Sleep Medicine Certified doctor on my appointments. The first was a neurologist who pushed my pressure up so high that my AHI went up then he would up the pressure again and so on. The next doc was a pulmonologist and listened to my input about my treatment and we tried alternatives until we got my AHI from 4-8 (six month average 18.6 before).
I'm really confused about periodic breathing as it is something more common in newborns. As I understand things mouth leaks may make your AHI unreliable. You could try using a chin strap and see if that helps. I have 0 % periodic breathing so I don't think12.2 is (don't know though) normal and an AHI of 9.3 needs attention.
How do you feel? You could start with what the tech suggested- a properly fitted and low leak mask. I would examine my sleep hygiene and be sure I'm getting quality sleep. Look at the medicines you take and figure out if the disrupt your sleep. They should have been able to titrate you to a better Ahi if it was a split sleep study.
Talk to the folks in the office and see if you can get an appointment with the doc. At my last sleep center I began to get the bums rush when it became obvious he was not helping me and my numbers were getting worse. I think it's easier to blow you off than to address your questions.
If you decide to titrate yourself take it slowly giving each change a chance before moving on. Too high a pressure can cause problems.
Clinical manuals are available on apneaboard.com
Good luck, taking care of yourself is what you should concentrate on doing. Keep us posted.

[Pugsy]

Is monthlong average AHI of 9.3 and periodic breathing of 12.2% "pretty good?"

No
I would NOT be happy or satisfied with either data point

Is mouth breathing a likely explanation?

Hmmm. Doubtful unless you are having massive mouth breathing allowing a truckload of apneas to materialize due to less than effective therapy pressures.

What else should I be doing?

How about posting a detailed report from a typical night? Especially the AHI breakdown with particular interest to the Clear airway numbers/index.

Do you know about the software so you can see more than the numbers off the machine's LCD screen?

[Tunapalooza]

Here is a screenshot of a portion of last night's data. I'm new at Sleepyhead, so if more data is needed, I'd be happy to provide it. I didn't include the leak graph, but "leaks" was zero. "Total leaks" was not zero, however, although it did not vary at all during these episodes.

[Pugsy]

How about an image of the SleepyHead Report that includes the AHI breakdown numbers on the left and the graphs on the right?

Total leaks won't ever be zero because the Respironics machine reports vent rate plus any excess leak.
Large leak territory beginning is somewhere around 80 to 90 L/min so as long as you stay well below that area your leaks are considered acceptable. Don't try to compare your leak line to a ResMed user's leak line. The S9 machine reports only excess leak and their large leak territory number to avoid is 24 L/min.
SleepyHead leak graph shows 2 lines for the Respironics leak numbers..top line is total leak. Bottom line is more along the lines of what it would be if it was reporting excess leak only. It isn't perfect due to some calculation issues when using APAP mode and the variable pressures. It's real close though.

From the zoomed in image above it looks like Obstructive apneas are likely going to be the bulk of that AHI and if that is true then your pressure is not sufficient to hold the airway open and prevent the events from materializing.

On the SleepyHead graphs on the right...AHI graph is not needed and you can turn it off in Preferences.
You can resize the graphs by hovering the mouse cursor over the bottom line of a graph until you see a little short double line then you click and drag to resize. SleepyHead will remember the change. By turning off unneed graphs and a bit of resizing you can get the main important graphs on one image. Main graphs that I like to see are the events graph, flow rate graph, pressure graph if using variable pressures, leak graph. The other stuff like volumes and respiration rates aren't that exciting. The norms for those values are very wide and lots of factors affect those values.

So they look like this

[Tunapalooza]

Pugsy - Thanks for the tips.

Here is the big picture. As you can tell from the tone of my original post in this thread, I'm a bit skeptical of the expertise of the respiratory therapist, and therefor doubtful of the "mouth breathing" explanation. I'm happy to be proved wrong, but I'd just as soon avoid futile exercises.

[Pugsy]

Your pressure line graph is weird for some reason. I think it is a little SleepyHead bug. Your pressure line should look similar to the top line of my report (I have 2 pressure lines because I am using BiPap or 2 pressures) with times of little spikey saw tooth things and times with increases and flat lines...yours looks weird.

What are your pressure settings? The 6 minimum and 16 maximum?

Do you remember being awake very much during this night? Especially maybe that last hour or so? Did you have a lot of awakenings or arousals that you remember? Are you sleeping? Well? Or tossing and turning with lots of fidgeting?

My personal opinion is the minimum pressure of 6 cm (if that is correct) is not sufficient to hold the airway open well enough to prevent the collapse that happens when the upper pressures are needed. The machine simply can't get to where it is needed quickly enough to prevent the obstructive apneas and hyponeas and the snores we see.
Until the AHI is reduced I don't know what to make of the PB %. I think that if he AHI would be reduced then I think the breathing should stabilize and the PB reduced...hopefully anyway.

Have you always used this 6 cm minimum pressure or is this a new setting courtesy of the new Kaiser thing?
I am thinking maybe 8 ish minimum pressure would clean up your report a lot...might need a little more.

Your leak line is fine. SH makes mountains out of mole hills when at this scale...the bulk of the up and down is related to the increased vent rate with the increase in pressure.

[Tunapalooza]

Hi Pugsy,

I see that SH clipped my pressure data by starting the graph at 10. My pressure range is 6 to 16. (My pre-Kaiser prescription was 4-20.) I do not remember being awake during the night, but I may have just become accustomed to poor sleep. Last night I changed to one of the new masks, a full face model. (Previous night was nasal mask and chin strap.) Subjectively, I didn't sleep well although I tolerated the mask. The objective data was much better, however.



I'll stay with this mask for a couple of nights and see if the numbers hold.

Marc

[cosmo]

I'd start the pressure around 9cm for a day or 2 and see how it goes.