BiPap auto SV graphs - Help Please

[Mr Capers]

Thanks to lots of help from Pugsy, I think I finally got a readable graph!

Here's one nights detail, the 19th, with my BiPAP Auto SV.

My questions to all the experts out there are:

1. What do you find important here - what data do you look at first?
2. Where should I take action to get better therapy - to feel better? In other words, any settings I should change?
3. Would the analyzer program help me understand my data?
4. Does anyone know the Respironics definition of Periodic Breathing? Is it related to centrals? I had more centrals than obstructives in my sleep study.

Any and all suggestions are welcome. And thank you in advance,
Mr Capers

[Pugsy]

Mr Capers,
I cannot help with the BiPap data and questions so I am bumping this in hopes that one of the BiPap pros will see your post. If no response I would suggest amending your Subject line to include Bipap help needed. We have a few members that understand your reports and can offer answers. They may not see your post or know that their special talents are needed.

[Mr Capers]

Thanks Pugsy,

You are a real friend,
Mr. Capers

[dsm]

Mr Capers

Your PB scores are the highest I have ever seen anyone present but what they tell me is that your certainly need a Bipap AutoSV.

PB is indicative of cyclic breathing, that is, you fluctuate between high resp rate/ volume vs smaller rate /volume. These machines are designed to adjust for that.

Your av tidal volume seems fine - no complaints there.

I see that just like my Bipap AutoSV, yours goes close to the maxIpap several times a night. That is indicative of fluctuating respiration plus looking at your HI count vs AI count, again the data suggests you go through periods of reduced volume.

I see you have a lowish Epap which based on the 0 AI scoring shows that you don't appear to have a serios OSA issue, just respiration with probable CA events.

Yours is an interesting chart.

DSM

[Mr Capers]

Thanks for your comments, DSM.

Where are some of the other regulars? Maybe I need to use F/U in my title as Pugsy did. That sure got a lot of back & forth going!

As a newcomer to this group, any other opinions on my data would be appreciated. Apparently my sleep Dr. isn't going to look at it, so I may well be on my own.

Thanks, and Happy Naps
Mr Capers

[Pugsy]

Where are some of the other regulars? Maybe I need to use F/U in my title as Pugsy did. That sure got a lot of back & forth going!

You would probably get a lot of lookers but still not many comments except pats on the back stuff.
Problem is that there are very few regular members with BiPap experience at the level to discuss this with you.
I certainly don't have a clue.

You belong to an elite club. There are a couple of others that could chime in. Where is SWS???

[-SWS]

Where is SWS???

AWOL again. That %#&@ -SWS...

Apparently my sleep Dr. isn't going to look at it, so I may well be on my own.

Complex Sleep Apnea can be very difficult to treat. On that basis, many Complex Apnea patients would be thrilled to have those charts, Mr Capers. But there may be room for improvement in your treatment, and that really requires a CompSAS-knowledgeable doctor at the helm---rather than proxy treatment by message-board patients.

Your sleep doctor may simply require more time to evaluate positive long-term trends or even episodic patterns regarding your CompSAS treatment. However, if you ever become convinced that your doctor is unwilling to perform necessary follow-up evaluation for your CompSAS treatment, then shop for a new sleep doctor.

What do you find important here - what data do you look at first?

Look for excessive residual events of any kind and excessive leak. You spent 1.8% of the night in a large-leak state. So fix that leak problem and improvement may result.

Where should I take action to get better therapy - to feel better? In other words, any settings I should change?

Outstanding PB with hypopneas really should be properly explored/addressed in a PSG titration, Mr Capers. During that titration, Respironics would have your clinicians evaluate the results of this titration step to see if any improvement occurs:

...set fixed BPM rate to 2 less than spontaneous BPM rate. Start I time at a minimum of 1.2 sec.

http://global.respironics.com/UserGuide ... 042977.pdf

Would the analyzer program help me understand my data?

If I had CompSAS I would probably stick with analyzing Encore data and conferring with a cooperative and CompSAS-knowledgeable sleep doctor.

Does anyone know the Respironics definition of Periodic Breathing?

Unfortunately, this one is not a quantitative definition:

Periodic breathing is defined as alternating periods of hyperventilation with waxing/waning tidal volume and periods of central hypopneas or apneas. There are many forms of periodic breathing, one of which is Cheyne-Stokes Respiration (CSR). CSR is characterized by a cyclic pattern of waxing and waning during periods of apnea, and deep, rapid breathing.

http://bipapautosv.respironics.com/

Is it related to centrals? I had more centrals than obstructives in my sleep study.

In the case of CompSAS, periodic breathing's respiratory overshoot and undershoot are dysfunctionally interrelated with central apneas and/or central hypopneas. Periodic breathing's preliminary hyperventilation stage is believed to sufficiently skew dynamic blood-gas values, causing those interrelated central apneas and/or hypopneas to occur. I would suggest a Google or Google Scholar search regarding the topics of CompSAS and Periodic Breathing.

A friendly reminder to work on getting leaks under better control. Good luck.

[Mr Capers]

Many thanks for your thoughtful reply, SWS. BTW, where did Gravity Probe B come down?

I hadn't thought too much about leaks yet, what with 3 different masks I'm rotating, and everything being so very new. I put my daily leak data in a spreadsheet and was shocked. No leaks reported with the two nasal masks (FlexiFit HC407, and Resmed Mirage). Then I changed to the Opus 360 nasal pillows. Comfort was great, but the leaks started. I guess I can't use the nasal pillows, at least not the Opus. Now to find a mask that doesn't make it hard to put on my glasses the next day. Anyway, great point about the leaks, missed it because I'm drowning in data, acronyms, new definitions, etc.

Your sleep doctor may simply require more time to evaluate positive long-term trends or even episodic patterns regarding your CompSAS treatment. However, if you ever become convinced that your doctor is unwilling to perform necessary follow-up evaluation for your CompSAS treatment, then shop for a new sleep doctor.

The sleep Doctor issue and titration are both much more complex. The Dr. has not appeared, almost all contact has been with the 3 respiratory techs in the department (he's behind the curtain, like the Wizard of Oz ) except for one phone call to tell me he had ordered the machine. I asked about titrating me on it, and was told that titration was unnecessary. My initial settings were in the prescription. Now bear in mind that I had a titration "run," a week at home on straight CPAP. They downloaded the data, saw that my AHI went from 35 to 30 during the week,and apologized for not putting me on the correct machine. This being Kaiser, they didn't have a ventilator available, so I begged for any machine at all and got to take home a BiPAP for about a week and a half.

The sleep Dr. did not want me to look at my data. He said it was dangerous to do because one might "obsess on a number" if you didn't have the clinical judgement to evaluate it. Faced with this attitude, I planned to get some help here, do a LOT of reading, then go back to the RTs and suggest strongly that evaluation of the machine data was something they, and the Dr., should do. Kaiser being a HMO, I'm restricted to their Drs.

Respironics wrote:
...set fixed BPM rate to 2 less than spontaneous BPM rate. Start I time at a minimum of 1.2 sec.

I don't think I have any fixed BPM rate set. My Backup Rate is Auto, so the ventilator responds dynamically to changes in my breathing patterns. This is based on a hurried scan of the clinician's manual, so I could be a mile off - even in the vicinity of Gravity Probe Omega

The quote from Respironics on Periodic Breathing was very helpful. So far, I'm not tagged with the CSR diagnosis, just your average ole' periodic breather. I've just downloaded some journal articles from PubMed. I think I've seen a discussion here on the relationship between blood gasses and periodic breathing. I am feeling like the student who skipped all the classes trying to cram for finals. Except my health depends on it.

Many thanks for your comprehensive reply, I'll be referring back to it often,
Mr Capers

[-SWS]

If your PB index continues to hover around 7% or worse, then I would respectfully disagree with your doctor about a PSG titration being unnecessary. So get those leaks under control to see how much improvement may be in store.

As a recap of what I have linked above, Respironics suggests that a clinician change the backup rate from auto to manual when this two-fold criteria is met:
1) IPAP peak is not repeatedly hitting IPAP max (yours is not), and
2) outstanding PB and hypopneas still occur (your H are acceptable but your PB just may improve with methodical tweaking, thereby consolidating sleep architecture)

Again, if you meet those two criteria, Respironics would have you sleeping in the PSG with your clinicians experimentally turning off auto backup rate. Subsequent recommended titration steps would have your clinicians methodically adjusting I time looking to improve your residual PB. Short of having a crystal ball, your doctor has absolutely no way of knowing whether that 7% residual PB score can or cannot be improved by following the manufacturer's recommended PSG procedures.

On second thought, I'd probably start shopping for a new in-network sleep doctor now since yours thinks follow up treatment, PSG sleep studies, and manufacturer-recommended titration protocols are all "unnecessary" for a CompSAS patient wanting improved sleep and health.

As a side note GP-B is still up there. Once NASA decides to shut down all GP-B spacecraft systems, it should take thirty years or more for GP-B's orbit to decay and finally crash land. We're all located near GP-B...

[old64mb]

On second thought, I'd probably start shopping for a new in-network sleep doctor now since yours thinks follow up treatment, PSG sleep studies, and manufacturer-recommended titration protocols are all "unnecessary" for a CompSAS patient wanting improved sleep and health.

While this stuff is way over my head (albeit fascinating), one helpful tip I can provide from my knowledge of Kaiser - fortunately, not experiencing this for myself, but for others - is to ask the RTs which doctors have had a number of CSA patients come through and have success, and if it's a limited number to ask their friends in other Kaiser offices about that. It's fairly hard to get that info out of MDs, but lower level staff can often give you a pretty good feel - and they owe you.

[Mr Capers]

Thanks -SWS, and thanks for the Kaiser suggestion old64mb.

Let me "esplain" about this Kaiser thing. Our subset of Kaiser has one sleep Dr. recently recruited into the system from outside practice. I asked the DME rep, who works with all 5 local sleep Drs, his assessment was that the Kaiser Dr. was good. If I leave this Kaiser operation, I can probably access a wider pool in San Francisco. However, I will be dealing with the local RTs for as long as I'm able to hobble in the door. My preference is to be an "interesting" patient and get as much local help as I can, including the Dr, if possible.

That's why my questions. I'm trying to get armed with enough knowledge so that we can discuss my case. If I exhaust this route of being interesting, then I will have little alternative but to comb the org chart looking for a compatible, competent sleep Dr. no matter the commute. The other reasons for the questions is to be informed enough about my problems that I'm not totally flying blind. So far, short-term memory being what it is, my master plan is to have SWS' comments tattooed on my wrists - this would be a good one:

In the case of CompSAS, periodic breathing's respiratory overshoot and undershoot are dysfunctionally interrelated with central apneas and/or central hypopneas. Periodic breathing's preliminary hyperventilation stage is believed to sufficiently skew dynamic blood-gas values, causing those interrelated central apneas and/or hypopneas to occur.

, slide my sleeves up enough and read this under the table, reciting as if I knew what I was saying.

I feel that I have been withholding data, but I haven't. Based on SWS' useful comments, I copied some numbers into a spreadsheet so that comparisons might be made, trends examined, bailout funds obtained, etc. Here's the little bit I've typed in so far:


The Opus Nasal Pillows were used from the 12th forward. Thanks to SWS getting me to look at the leak #s, I'll be back to hurting the bridge of my nose with a nasal mask tonight. This additional data may help your thinking. At the very least, there's a lot more data than a one day snapshot. Old saying "You can't see the whole sky through a bamboo tube." Let me know if I should add some more of the data from the detailed reports.

Again, if you meet those two criteria, Respironics would have you sleeping in the PSG with your clinicians experimentally turning off auto backup rate. Subsequent recommended titration steps would have your clinicians methodically adjusting I time looking to improve your residual PB. Short of having a crystal ball, your doctor has absolutely no way of knowing whether that 7% residual PB score can or cannot be improved by following the manufacturer's recommended PSG procedures.

As you see, PB scores vary quite a bit. Three nights of 0, the 7% night being the highest. I picked that date's data just because it was pretty recent, thinking I was somewhat used to the air blowing up my nose. Didn't even realize the PB# was high. (Thought the "E" on the gague stood for Excellent!)

Kaiser seems to dance to its own tune. The original sleep study was done at home. One clear advantage to this is that you sleep in familiar surroundings, and they get data from a pretty large sample, assuming you sleep enough hours. Titration then happens when you get a data-capable CPAP, take it home, and sleep with it for a week. Upon your return to the sleep dept. they download the data, set your prescription, and you are on your way. Since my titration was with the wrong machine, straight CPAP, my AHI went from a sleep study # of 35 to only 30.

How the sleep Dr knew enough to set my prescription to IPAP Max 20, Min 5, EPAP 5, Backup Rate: Auto, I don't know. The Backup Rate would seem to take care of itself if you thought the Respironics algorithm was correct. The pressures are from where, exquisite clinical judgement, perhaps?

SWS, you have given me a lot to chew on. I'll be re-reading your posts. Many thanks for exercising some grey cells on my behalf. Go directly to GO and collect $200 in crisp Monopoly money, or a crisp martini. I'm raising a glass to you tonight!

Life is a process. I'l keep you posted,
Mr Capers

[Mr Capers]

Hi Everyone,

Here's one more piece of the puzzle:

These are numbers from my at home sleep study.
Column B is a count, i.e., the total number of Obstructives, Centrals, etc.
Column C is percentage of the total apneas
Column D is the count per hour. Thus, the bottom right number is my AHI of 34.7
As you see, my Centrals were 45.8% of all apneas

Maybe this will help. I'm encouraged by what I've learned today. Thanks again.

Happy Naps
Mr Capers

[Kiralynx]

Mr. Capers,

As a fellow Bipap Auto SV user, I may have a few thoughts for you, but I'm three-quarters asleep just now and will have to get back to you. ~SWS' comments are, as always, enlightening.

I can tell you that based on my own experience, getting the leak rate under control for whichever mask becomes your best one is essential. This board is chock full of people with tips for how to do that very thing.

[-SWS]

A bump just in case other forum members have thoughts/analyses for Mr Capers.

I did have one other thought about your sleep doctor, Mr. Capers. Your doctor may be waiting to see how well or poorly you acclimate to your BiPAP autoSV. I think the current estimates are that around 50% of CompSAS patients are expected to improve as their bodies biologically adapt to CPAP.

So in essence, your doctor may be waiting out an initial month or two for biological adaptation to your machine before evaluating therapy changes. However, if your doctor didn't communicate that...

[Mr Capers]

Thanks again SWS,

Can't see inside sleep Dr's head, but that was why I was hoping to bring in some reports, try to jump start a conversation. To do this, I really needed feedback from the wiser/ more experienced heads. The bump is appreciated and I am doing the same. I'm pretty sure I posted a night pretty close to the edge of the distribution.

If I get the chance, life goes on away from the sphere of influence of Gravity Probe B, I'll try to post another, different, day.

Thanks to your comments, I've changed back to a nasal mask with concomitant reduction in leaks but additional bridge of nose pain. I'm vaguely aware of a blood gas relationship with centrals. If I've always breathed that way, why wouldn't it carry over to sleepy time? Some really deep breaths then a series of shallower ones, then another really deep one. Maybe my problem is just being different? Are you considered different as a cigarette smoking glasses wearing monkey?

When I ask about seeing and reviewing data, why do they act as if I were a cigar smoking, parasol carrying dog? Does your sleep Dr discuss your data with you?

I obviously need help posting a tantalizing thread title like Pugsy's F/U with Dr. Any other thoughts, analyses, poetry, soothsaying, chit chat about the data I've shown so far?

I may be feeling just a bit better. This is all so new. I've had two and a half weeks on wrong machines CPAP, BiPAP, and Monday will be two weeks on the BiPAP servo ventilator. Not really a lot of therapy to counteract years of apneas, oxygen deprivation, etc.

Happy naps, and thanks for your thoughts,
Mr Capers