Need a Little Help With Periodic Breathing

[Tunapalooza]

I'm a Kaiser patient. Generally, I have high regard for my care at Kaiser. The exception is the "sleep lab." That is why I'd like to get some comments from the folks here so that I can be better informed on my next visit.

It has been a long time since I've had satisfactory sleep. I've used CPAP for at least 12 years, but the last few years have been the most problematic. I'm not rested and occasionally wake with headaches, the usual signs of poor quality sleep. I switched to Kaiser about three years ago. They issued me a PR S1 APAP. My AHI was consistently above 5 and sometimes above 10. Kaiser sent me for a couple of sleep studies and then switched me to a PR S1 BiPAP. Things didn't really improve. The respiratory therapist (I've yet to see a physician at Kaiser about my sleep issues) basically threw up her hands and told me that my sleep apnea is severe and that I should accept an AHI of 10. At the time, my average AHI was 9.3 and the average amount of time in periodic breathing was 12.2% (per the Respironics software used by Kaiser). That was about two years ago.

Yesterday I went back to Kaiser for a data download. I was not given the Respironics printout so I cannot make an apples to apples comparison, but I do now have Sleepyhead. The data is as bad or worse. This time, the therapist seemed concerned and believed that the AHI should be below 5 (of course) and she was concerned about the high percentage of time in periodic breathing. She has referred me for a further sleep study.

Per Sleepyhead, here are my averages for the past 30 days:
AHI: 9.56
CSR: 5.63% (I am aware that Sleepyhead records all PB as CSR, whether it is or not.)

These averages are a bit misleading because some nights have low numbers, such as CSR=0. About half the nights have a CSR over 7.5% and a couple of nights in the last month have a CSR in the neighborhood of 11%. I thought it might be useful to include some waveforms. The first is from an episode lasting 5:43 and the second is from an episode lasting 3:08.





I'm hoping that the further sleep study will help diagnose the issue. However, I am concerned that a single study may not prove helpful. First, not every night sees high percentages of PB, so a single night of data may not be representative. Second, the triggers may be in my environment so sleeping in a medical lab is not really representative. (Although I see the same phenomenon while at a hotel on a business trip.)

In any event, if the community here has anything to offer in terms of knowledge or suggestions in dealing with Kaiser, I would be grateful.

Marc

[Pugsy]

Looks suspicious for Complex Sleep Apnea if you were for sure asleep during those CA clusters.
Might want to watch this video.
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be
You may be needing one of those ASV type of machines that treat both obstructive sleep apnea and central sleep apnea.
I don't know if those CAs (centrals) are something that is happening because of the machine pressure or if you would have had them even during a diagnostic sleep study but you need an in lab sleep study to determine for sure and to figure out the best way to deal with them.
Sometimes using a regular bilevel machine (like you have now) will get the job done but sometimes it won't.
You need more pressure for the OAs...whether more pressure will cause more centrals is unknown at this time but it's a possibility.

[Tunapalooza]

Pugsy,

Thanks for the video. Do you have any idea if the Respironic software used by clinics offers the same detail as Sleepyhead? I ask because there is a wealth of data on that little SD card but the therapist only seems to look at summary data like average AHI or periodic breathing. Since my machine didn't respond to these apneas, it seems like trying me out on an ASV machine at home would be quicker, easier and cheaper than a sleep study. In any event, it seems like I'm making some progress in figuring this out. A journey of a thousand miles begins . . .

Marc

[Pugsy]

Check your private message box. I sent you some information on where to find Encore Basic and what it will show you.
It's going to be pretty much the same data but just visually presented differently.

[Sleeprider]

Marc, the Respironics EncoreBasic data will show very similar data, but provides only the last day of waveform data. This is spread across a 7-page report PDF rather than a graphic you can zoom as in Sleepyhead. It has plenty of detail to show the PB problems, and the report will be understandable to your therapists.

Basically you will get a waveform chart for each day you download data into Encore, along with the summary information, compliance data, daily details for 7 days and a summary. Remember when you download the data, make sure the delete data box and reset patient data boxes are not checked, and exit. It will take you back to the prescription and history tabs. The History tab is where your data details can be viewed, printed, saved.

[cnaumann]

I am really wondering why you are not on ASV. The prices of the machines have come down significantly. Where the cost should not be a major factor for the insurance company. You have demonstrated that BiPAP is not effective, ASV is the next medical step.

It has worked wonders for me.

[Tunapalooza]

I am really wondering why you are not on ASV. The prices of the machines have come down significantly. Where the cost should not be a major factor for the insurance company. You have demonstrated that BiPAP is not effective, ASV is the next medical step.

It has worked wonders for me.

Agreed. I will dutifully attend the sleep study and hope to get the ASV device thereafter. I retrieved some two year old data that shows roughly the same percentage of periodic breathing and similar waveforms. I'm kicking myself for not having moved more aggressively on this, but also disappointed that Kaiser failed to address the issue when it was raised two years ago. ASV devices were available then and presumably sleep medicine professionals were aware of this, even if I wasn't.

[archangle]

CSA. ASV.

Done.

I hope you don't get further screwed by Kaiser if your overnight study happens to be one of the nights where you don't have CSR.