A Question re: my AUTOPAP Trial

StillAnotherGuest wrote:If you review the hypnograms that BB posted in the other thread, you will note that there are essentially no events on low-level PAP (events are color-coded in that software and the lighter ones don't show up that well, but I don't think there are any at <10 cmH2O).

BB also purports to have central disturbance (which is debatable, but put that aside for a minute) which may be pressure-generated in nature. With not much time studied on low level PAP, which is essentially event-free, and too much time on higher pressures, which is chock-full of events, many apparently central in nature, getting more data on low level PAP could be very helpful. Locking that thing at low-level PAP for a couple of hours could be a good idea, since I don't believe there's any guarantee that it will correctly identify NR (central) apneas and stay at low level in straight APAP mode.

While that may or may not have been the rationale of whoever is wingin' those dials, I think any information has the potential of being helpful information.

SAG

Hi, SAG.

You could be right in your assessment of what the doctor is thinking, but I have little confidence in him at this point and am of the opinion that this was much more likely a screw-up. We'll see what he has to say on Thursday about what was intended with this trial period.

Re: my central events, here's what the pertinent part of my initial (split-night PSG) study had to say, back in 10/07. I should note that these first two studies were done in a different lab. Shortly afterwards, my insurance changed, and this doctor and lab were no longer available to me. My DME recommended my current sleep doctor, who wasn't interested in my initial sleep studies, even though I gave him copies of them when I first met with him a few months later. Apparently, they are no longer a part of my sleep doctor's file, but I kept copies.

10/4/07 S/N PSG Impression: Respiratory monitoring showed severe overall respiratory disturbance consisting mainly of apneas, hypopneas, central apneas and mixed (central/obstructive) events with an overall RDI of 107.7 (AHI of 106.7, Central RDI of 21.7, Obstructive/mixed RDI of 85.9). Cheyne-Stokes respiration is noted at times during the study. Oximetry showed moderate to severe desaturation with saturations as low as 79%. 58.3% of total sleep was below 90% saturation with a mean sleep saturation of 90.1%.

10/4/07 S/N PSG Diagnosis: Severe Obstructive Sleep Apnea (Obstructive/mixed RDI of 85.9). Central Sleep Apnea (Central RDI of 21.7) with an over all RDI of 107.7.

10/4/07 S/N Titration Impression: CPAP was titrated from 5 to 15 cm and BiPAP from 12/6 cm to 19/11. The optimal CPAP/BiPAP pressure was not determined. Although CPAP pressures of 13 and 15 cm appeared somewhat helpful (reduced obstructive events and improved oxygen saturation in non-REM sleep), central respiratory disturbance greatly increased with the higher CPAP pressures. A switch to BiPAP was made, but without any significant improvement to the central apnea. As well, obstructive events reappeared during supine-REM sleep and did not resolve despite increased BiPAP pressures. Note the ongoing presence of alpha intrusion.

Three weeks later, I had a titration study done. Findings:

10/24/07 Impression: CPAP was titrated from 5 to 13 cm. The optimal CPAP pressure was not determined definitively. A CPAP pressure of 12 cm appeared effective at eliminating the majority of obstructive respiratory events and maintaining good oxygen saturation (mean saturation at this pressure was 95.8% with a low of 88%). Although the RDI at 12 cm was still 19.8, the majority of the residual events were sleep-onset central/Cheyne-Stokes in origin and occurred during a brief period while the patient was trying to return to sleep after an arousal. There were, however, still several scattered hypopneas seen during supine-REM sleep at the end of the study on 12 cm.

10/24/07 Recommendations: CPAP at 12 cm appears to be a good starting pressure and is recommended as soon as possible. If symptoms persist, a repeat titration would become necessary to further clarify an optimal pressure. Follow-up of the persistent central apnea/Cheyne-Stokes is indicated.

Does that info shed any new light? (Thanks to all for my continued education in this process.)

Do you sleep studies show more events later in the course of the time you are sleeping? Maybe that is why the spilt night setting was added on. But I question why the initial setting is only at 7 from what you have posted. Looks like your doctor might have found something to look into but wonder about the logic in the other settings. I learned some good things from the sleep doctor but some of the things he suggested were way off.

Seems like you and/your insurance company is spending big bucks on sleep studies and doctor's visits but still taking stabs in the dark. Noted that you have only a Plus M machine and it may be wise for you to consider getting a data capable machine where you can tract your progress and adjust at various settings. I have obtained mine lightly used thru internet for less than it would cost to rent one locally for 1-2 months. If you have enough computer skills to write on a forum you have enough to moniter your own progress and make adjustments.

This forum has helped me greatly in taking control of my health. Seems like an on-going learning experience. I Happen to have an Remstar Auto tank but never thought about using the spilt night mode so it would auto adjust only during the 2nd half of the night when the events increase until today. Will try this tonight.

muskyjack wrote:Do you sleep studies show more events later in the course of the time you are sleeping? Maybe that is why the spilt night setting was added on. But I question why the initial setting is only at 7 from what you have posted

I've uploaded the graphs from my two most recent sleep studies, done in my current doctor's lab (not the ones I quoted above). The one from November '08 is at http://s675.photobucket.com/albums/vv12 ... 011-12-08/, and the one from March '09 is at http://s675.photobucket.com/albums/vv12 ... 003-23-09/. I have the charts from both of my initial studies in 2007, but there are no hypnograms included.

Looks like your doctor might have found something to look into but wonder about the logic in the other settings. I learned some good things from the sleep doctor but some of the things he suggested were way off.

I wonder about his logic on many things...

Seems like you and/your insurance company is spending big bucks on sleep studies and doctor's visits but still taking stabs in the dark. Noted that you have only a Plus M machine and it may be wise for you to consider getting a data capable machine where you can tract your progress and adjust at various settings.

Agreed, on all counts. I've been trying to obtain a fully data-capable machine for over a year now. For some reason, my doctor hasn't made the required effort to make that happen (he thinks I'm doing "pretty good!"), and my DME is fighting me.

This forum has helped me greatly in taking control of my health. Seems like an on-going learning experience. I Happen to have an Remstar Auto tank but never thought about using the spilt night mode so it would auto adjust only during the 2nd half of the night when the events increase until today. Will try this tonight.

Good luck with your experiment.

If you have additional information from the first 2 studies, can you scan and post it?

You sound like the Poster Child for CompSAS.

And CompSAS needs to be titrated delicately, so if

BleepingBeauty wrote:CPAP was titrated from 5 to 15 cm and BiPAP from 12/6 cm to 19/11

during a split night study there probably wasn't going to be a lot of time to allow anything to equilibrate.

Your overall sleep architecture is awful (way too much wake), which is probably going to have to be dealt with separately-- however, a very important concept related to CompSAS is that sleep instability promotes breathing instability, so working on that aspect should pay good dividends.

How tall are you?

I think you're going to have two general directions you can move in:

Determine the lowest effective straight CPAP pressure and just sit on it for a while, because a lot of the sleep mavens are saying time will allow CompSAS to correct itself; or

Get an Adaptive Servo Ventilation device. This would probably entail another NPSG and a different machine, as well as potentially a lot of $$$.

SAG

StillAnotherGuest wrote:If you have additional information from the first 2 studies, can you scan and post it?

Sure. I think you're asking for the charts included, and not more of the doctor's notes. I'll get on that and will post links when everything's been scanned and uploaded to photobucket.

You sound like the Poster Child for CompSAS.

Well, it's nice to know I'm good at something.

And CompSAS needs to be titrated delicately, so if

BleepingBeauty wrote:CPAP was titrated from 5 to 15 cm and BiPAP from 12/6 cm to 19/11

during a split night study there probably wasn't going to be a lot of time to allow anything to equilibrate.

Your overall sleep architecture is awful (way too much wake), which is probably going to have to be dealt with separately-- however, a very important concept related to CompSAS is that sleep instability promotes breathing instability, so working on that aspect should pay good dividends.

How tall are you?

5'3"

I think you're going to have two general directions you can move in:

Determine the lowest effective straight CPAP pressure and just sit on it for a while, because a lot of the sleep mavens are saying time will allow CompSAS to correct itself; or

Get an Adaptive Servo Ventilation device. This would probably entail another NPSG and a different machine, as well as potentially a lot of $$$.

SAG

You're the third or fourth forum member to recommend ASV to me. My doctor's office balked at the suggestion when I brought it up recently, saying it's not necessary for me. I'm more than ready to find a new doctor.

Thanks for your help with this. If I've misunderstood what part of the sleep study reports I should be making available, please let me know.

SAG will look at any and all that you post.

He runs a sleep center himself and has his share of alphabet soup behind his name.

BleepingBeauty wrote:ASV... My doctor's office balked at the suggestion when I brought it up recently, saying it's not necessary for me. I'm more than ready to find a new doctor.

[quote=""BleepingBeauty's signature line"]Diagnosed with severe OSA (107 AHI), central apnea and Cheyne-Stokes respiration in late 2007[/quote][quote=""BleepingBeauty's equipment profile"]M Series Plus C-Flex CPAP Machine[/quote]
And this has been going on since 2007?

Well, the good news is that sleep doctor is not "necessary" for you either. If that doctor saddled you with suboptimal CPAP for two years, then I would highly recommend getting a new sleep doctor. There are plenty of good sleep doctors out there. Many actually keep up with changes in their field...

I would also encourage you to take advantage of SAG's willingness to look at your data.

jules wrote:SAG will look at any and all that you post.

He runs a sleep center himself and has his share of alphabet soup behind his name.

Thanks, jules. That's really good to know.

I've just scanned all of the charts and graphs from my initial reports and will upload them shortly. There are four pages from my S-N PSG and two from my first Titration. I'll post links when I'm done.

SAG, I believe I posted the pertinent parts of the doctor's notes on these first two studies, but if you want to see them in their entirety, I'll scan and upload those, too. Let me know. Thanks for sharing your expertise; much appreciated.

SAG is not a MD but a "glorified" tech with a few extra bowls of alphabet soup and lots of time in the kitchen obtaining them.

Okay, I've uploaded all the charts and graphs from my first two studies. The initial Split-Night PSG (four pages) is here:
http://s675.photobucket.com/albums/vv12 ... 2010-04-07

and the initial Titration (two pages) is here:
http://s675.photobucket.com/albums/vv12 ... 2010-24-07

Hi, -SWS. Sorry for the late response; I missed your post earlier.

-SWS wrote:

BleepingBeauty wrote:ASV... My doctor's office balked at the suggestion when I brought it up recently, saying it's not necessary for me. I'm more than ready to find a new doctor.

[quote=""BleepingBeauty's signature line"]Diagnosed with severe OSA (107 AHI), central apnea and Cheyne-Stokes respiration in late 2007

[quote=""BleepingBeauty's equipment profile"]M Series Plus C-Flex CPAP Machine[/quote]
And this has been going on since 2007?[/quote]

In a one-word answer, yes. But to clarify, my first two studies (PSG & Titration) were done in a different lab, and my current sleep doctor doesn't hold those studies in any regard whatsoever. (I did give him copies when I first met with him, back in December of '07, but they're not a part of my file with him. Which makes me wonder how he could have been "treating" me if he wasn't relying on those sleep studies, since my first sleep study done at HIS lab was this past November.) My PCP, who knows nothing about OSA (nor did I, at the time), wrote the scrip for my current machine because I didn't have a sleep doctor and had no idea I should consult one. ("Here's the scrip; get it filled at this place; use the machine.") The RT at the DME advised that I contact a legitimate sleep doctor, and he recommended this jackass that I'm fed up with. (The DME probably likes and recommends my doctor because he lets them get away with giving patients the cheesiest machines possible. It virtually guarantees future visits to the doctor's office, not to mention additional lucrative sleep studies.) Gahhh. I'm so cynical sometimes, I scare myself.

Well, the good news is that sleep doctor is not "necessary" for you either. If that doctor saddled you with suboptimal CPAP for two years, then I would highly recommend getting a new sleep doctor. There are plenty of good sleep doctors out there. Many actually keep up with changes in their field...

Well, as I said above, I can't blame my sleep doctor for the machine I started out with. But I sure CAN be pissed off that he's forced me to keep using this machine, which obviously doesn't treat my problem very well. He thinks I'm doing "pretty good!" with my therapy. I've been pleading for at least a data-capable machine for over a year now, to no avail.

I called my insurer yesterday to inquire about other sleep docs on the plan. I was given the name of five other doctors, each of whom is about a two-hour drive from here. So if things don't improve on Thursday, when I return this machine to my doctor's office and get the results (and when I expect to have it confirmed that this week-long trial on AutoPAP has been a huge waste of time), I'll be making phone calls and "interviewing" these new doctors to weed out any who have a "God complex" and/or don't take kindly to patients who want to be proactive and monitor their own therapy. I'm determined to find the doctor who will get me the equipment I need for my situation and work WITH me to tweak things until they're optimal. I'm sick of being jerked around.

I would also encourage you to take advantage of SAG's willingness to look at your data.

Already uploaded. I appreciate all the help I'm receiving here. Thanks.

It would be great to get the other graphs from the first two sleep studies, or at least the first one, to look at the pulse oximetry. There are low oxygen saturations/desaturations, but their origin needs close scrutiny, specifically, if your overall baseline is low (which, looking at the last two sleep studies, as well as the mean values of the first two, that does seem to be the case, especially for a youngster like yourself). Low baselines can make desaturations more severe, and a look at the original oxygen saturation without PAP support will provide a little better direction as to approach. There are some low values, but exactly how many? Was it artifact? How many actual desats were there? More on that in a minute...

And again, it don't matter how you ended up on 2 hours of 7 cmH2O, that info could be helpful.

In a search for another physician, ask this specific question:

What is your current approach to treating Complex Sleep-Related Breathing Disorder (or Complex Sleep Apnea Syndrome)?

Collect the answers and report back.

Fiddling with graphs, numbers, acronyms, machinery etc. is fun, but let's not stray too far from an important concept. The SAG sig used to be "You have to know what it is you're trying to fix before you try to fix it." After reading your first posts, it seems like

1. You often don't sleep well. This is supported by the poor sleep efficiencies in the NPSGs.
2. There is talk of using Provigil when you are tired during the day, presumably when you don't sleep well. Frankly, in my view, it would make more sense to try to get you to sleep well rather than, after burning the candle at both ends, setting the middle on fire.
3. You're really pushing for the data collection thing (OK, fine, like I said, any information can be good information), but while data collection and dial wingin' can also be fun, CSBD really don't take too kindly to spinnin' them knobs around.
4. Based on your height, your weight is xxx.x. OK, seriously, listen, hon, babe, sweetie-pie, sugar-plum, turtle-dove-- you can get the most bang for your buck by attacking that in a big way. I have the feeling that that's the cause of an underlying low oxygen baseline (you don't happen to have a PFT lying around do you?) but even if it isn't now, it soon will be.
5. (List all the other reasons for doing #4 here.)
6. Is doing a #4 like doing a really big #2?
7. SAG made a funny. Being a sophomoric moron (as noted in other threads) SAG is unfortunately highly susceptible to "Potty Humor".
8. Now where was I (SAG also has the attention span of an otter on crystal meth).
9. Oh yeah, without looking at anything other than your statements

BleepingBeauty wrote:I feel like I sleep well, but I don't have a data-capable machine to verify that. What I do know for sure is that I'm not sleeping enough. I have no trouble falling asleep; just can't seem to stay asleep for more than 5-6 hours, when I feel like I need 7-8. So I still nod out occasionally during the day. But I don't fear falling asleep at the wheel, as I did before therapy began. So things are much improved, but I'm still searching for a consistent good night's sleep. (Aren't we all?)

and

BleepingBeauty wrote:when I get a good night's sleep, I'm not tired during the day

it may be inferred that your present PAP approach really isn't all that bad, and you should be spending a lot more time on improving sleep hygiene, and if you're going to be thinking about a pharmacological approach, address sleep quantity and quality vs taking something to try to stay awake (treat the cause, not the result).

SAG

StillAnotherGuest wrote:It would be great to get the other graphs from the first two sleep studies, or at least the first one, to look at the pulse oximetry. There are low oxygen saturations/desaturations, but their origin needs close scrutiny, specifically, if your overall baseline is low (which, looking at the last two sleep studies, as well as the mean values of the first two, that does seem to be the case, especially for a youngster like yourself). Low baselines can make desaturations more severe, and a look at the original oxygen saturation without PAP support will provide a little better direction as to approach. There are some low values, but exactly how many? Was it artifact? How many actual desats were there? More on that in a minute...

I scanned and uploaded everything I was given re: charts/graphs from my sleep studies.

And again, it don't matter how you ended up on 2 hours of 7 cmH2O, that info could be helpful.

I suppose so, if the person interpreting the info is worth something. I'm not so sure that's the case. Considering my previous experience with this doctor, I don't have much faith. On the Titration Report from my sleep study in November, the tech wrote "needed chin strap." The doctor totally missed that notation when I saw him for the results, and I had to ask him, "What about the chinstrap?" His response was a look of confusion and a more concerted look through the report. If I hadn't brought it up, I would have continued my therapy with my nasal mask and my mouth open - for who knows how long.

In a search for another physician, ask this specific question:

What is your current approach to treating Complex Sleep-Related Breathing Disorder (or Complex Sleep Apnea Syndrome)?

Collect the answers and report back.

Will do. Thanks.

Fiddling with graphs, numbers, acronyms, machinery etc. is fun,

Well, it may be "fun" for you, since this is what you do. I'm not looking for fun; I want a decent night's sleep where my body is allowed to rest and I don't need toothpicks for my eyelids during the day.

but let's not stray too far from an important concept. The SAG sig used to be "You have to know what it is you're trying to fix before you try to fix it." After reading your first posts, it seems like

1. You often don't sleep well. This is supported by the poor sleep efficiencies in the NPSGs.

True.

2. There is talk of using Provigil when you are tired during the day, presumably when you don't sleep well. Frankly, in my view, it would make more sense to try to get you to sleep well rather than, after burning the candle at both ends, setting the middle on fire.

I agree, which is why I refused the Provigil when the doctor suggested it. I don't want to mask the problem. I want to fix it.

3. You're really pushing for the data collection thing (OK, fine, like I said, any information can be good information), but while data collection and dial wingin' can also be fun, CSBD really don't take too kindly to spinnin' them knobs around.

My purpose is not to "wing it" when it comes to my therapy (which I feel is what my doctor is doing). He's cavalier about my issues, and I feel like I can't rely on him to take good care of me. At this point, I don't think a sleep study gives a clear overall picture of what's happening at home every night. I want to take control of my treatment, with a competent doctor and experienced users on a forum like this to guide me.

4. Based on your height, your weight is xxx.x. OK, seriously, listen, hon, babe, sweetie-pie, sugar-plum, turtle-dove-- you can get the most bang for your buck by attacking that in a big way. I have the feeling that that's the cause of an underlying low oxygen baseline (you don't happen to have a PFT lying around do you?) but even if it isn't now, it soon will be.
5. (List all the other reasons for doing #4 here.)

Yes, I know. I'm working on it. I'm seeing a nutritionist and exercising. It's working, but slowly. If "PFT" is Pulmonary Function Test (I had to Google it), then the answer is no.

6. Is doing a #4 like doing a really big #2?

If only it was that easy...

7. SAG made a funny. Being a sophomoric moron (as noted in other threads) SAG is unfortunately highly susceptible to "Potty Humor".

Considering my nick on this forum, that's not a problem. My mind was twisted long before I was diagnosed.

8. Now where was I (SAG also has the attention span of an otter on crystal meth).
9. Oh yeah, without looking at anything other than your statements

BleepingBeauty wrote:I feel like I sleep well, but I don't have a data-capable machine to verify that. What I do know for sure is that I'm not sleeping enough. I have no trouble falling asleep; just can't seem to stay asleep for more than 5-6 hours, when I feel like I need 7-8. So I still nod out occasionally during the day. But I don't fear falling asleep at the wheel, as I did before therapy began. So things are much improved, but I'm still searching for a consistent good night's sleep. (Aren't we all?)

and

BleepingBeauty wrote:when I get a good night's sleep, I'm not tired during the day

it may be inferred that your present PAP approach really isn't all that bad, and you should be spending a lot more time on improving sleep hygiene, and if you're going to be thinking about a pharmacological approach, address sleep quantity and quality vs taking something to try to stay awake (treat the cause, not the result).

SAG

I think my sleep hygiene is pretty good. I haven't allowed myself to nap. I'm dragging my ass around all day and yawning almost non-stop, but I don't let myself nap. I'm usually asleep within ten minutes of hitting the pillow, and I stay asleep. I hardly ever get up for bathroom breaks anymore and, on the occasions when I do, I go right back to sleep. I just can't seem to get more than 5-6 hours a night, and I know I need more.

As I said above, I refused the doctor's suggestion of Provigil. I don't want to take something to keep me awake; I want the right sleep therapy so that I feel rested and alert.

Listen, I'm grateful to have a machine at all, since it does allow me to sleep and my quality of life is much improved. What I want is the right machine that will correct most, if not all, of my sleep issues so that I can feel truly rested during the day. My diagnosis scared the poop out of me, with all the related potential health issues to worry about if the condition isn't treated properly. That's all I'm trying to do here, is treat my problem(s) the best way I can. I'm making that effort, and I need a doctor who'll do the same.

Update on finding a new sleep doctor:

My insurance gave me the names of five doctors the other day, all supposedly trained in sleep medicine. But upon further inquiry, none of them specialize in sleep medicine. They're otolaryngologists. So I called my insurance again this morning and was more specific about finding a doctor who's Board Certified in sleep medicine. There's one, and I called her office to inquire about transferring my care to her.

I've confirmed that she is, indeed, Board Certified in Sleep Medicine. She's got "MD; PHD, FAASM, FCCP" (Fellow of the American College of Chest Physicians and Fellow of the American Academy of Sleep Medicine) after her name. I won't know what her approach is to treating someone with my diagnosis or whether I'll need yet another sleep study until I have a consultation with her. The first available appointment is in early May, but I can't reserve it until they have the referral from my PCP.

She'll want to see my previous sleep studies, which is encouraging. (My present sleep doctor's office tells me that my first two studies are of no use to him, since they weren't performed in HIS lab with HIS equipment. I would think ANY doctor would want previous records, but I guess my current sleep doc is "special.")

My PCP tells me the referral will be faxed by the end of the day. I won't dump my current doctor until after I've consulted with the new one and feel confident in her treatment plan. But I confess I'm looking forward to firing him...

OK, sounds like you should make some good headway with your potential new physician. I think a good pulmonary workup is a great idea, which you should get there. This might include the aforementioned pulmonary function test and a pH, pCO2 and pO2 analysis (see Slinky, I didn't say "***"). CompSAS is generally a syndrome of hypocapnia (low pCO2) but due to some breathing restriction, you may have a little hypercapnia (elevated pCO2). And that oxygen baseline hovers a little low on PSG, which gives supplemental oxygen with PAP at least a quick look-see.

BTW, what is the elevation of where you live/where you were tested?

More questions to ask on the visit:

RIght off, ask if they employ Adaptive Servo Ventilation machines (don't automatically assume they do, and that's a good "ice breaker" to show you know what you're talking about without being too threatening).

If they use ASV, find out which they prefer. If they use the Respironics ASV, we need to determine if you're a long-cycle or a short-cycle CompSAS (although with an AHI of 107, it's probably a safe bet you're a short cycle. Bev, clearly, is a long-cycle).

See if they encourage the use of hypnotics (like zolpidem) to help stabilize sleep. That's very "in" right now.

Not using ASV, or to any great extent, is not necessarily a problem. As noted before, routine CPAP, and time, is being used a lot these days.

SAG