A Question re: my AUTOPAP Trial

I was thinking of the clinic director as staff. She sounds like possibly the one who has let things get over the top. You're right to not blame the tech.

BTW, I call your reaction (the b-word) to events my "terrier mode." I don't think I would have been as patient as you, I would still be barking. Although maybe less now that I am on the hose!

Good luck with all of this and keep us posted.

raylo wrote:I was thinking of the clinic director as staff. She sounds like possibly the one who has let things get over the top. You're right to not blame the tech.

BTW, I call your reaction (the b-word) to events my "terrier mode." I don't think I would have been as patient as you, I would still be barking. Although maybe less now that I am on the hose!

Good luck with all of this and keep us posted.

Well, I've been "on the hose" since November of '07, and I've been "getting hosed" by this ex-doctor (and the DME) since then. The doctor's office never got the chance to see me in "terrier mode," as you call it, since they thwarted my plan to fire them last week. So if they think I'm bitchy based on what they've seen so far, they're sadly mistaken. It ain't over 'til the fat lady sings, and I haven't even warmed up yet.

Thanks, raylo.

waytootired wrote:How sad that the actual stories never make it on to this site... how about the truth?

I agree. I think that means listing the doc here so others will know what to expect.

At the very least I would ask the state licensing authority to determine exactly why I am not entitled to a copy of my medical 'favors'. It may turn out this has happened to many others before you. In my mind, they seem to roll the dice, betting that people on cpap are too confused to file a complaint.

GumbyCT wrote:

waytootired wrote:How sad that the actual stories never make it on to this site... how about the truth?

I agree. I think that means listing the doc here so others will know what to expect.

Although I totally agree with what you're saying (and the reasons behind it), Gumby, I won't be naming names here. I don't need a lawsuit on my hands for libel (and, with the way these people have been acting, it wouldn't surprise me in the least). Any jackass can file a lawsuit; doesn't mean it has merit or that he'll win it, but it sure does mean time and money for the party who has to defend it. So, nope. I'll freely offer my negative opinion locally, to anyone I know who's considering putting their healthcare in these people's hands. It won't have as big an impact, obviously, but I'll do my part. I've already spoken to two people who are planning to have sleep studies done, and they'll be going elsewhere. Word-of-mouth is a powerful thing.

Hey, "waytootired!" I'm waving (and laughing) at you!

At the very least I would ask the state licensing authority to determine exactly why I am not entitled to a copy of my medical favors. It may turn out this has happened to many others before you.

Not to worry. As a patient, I certainly am entitled to my medical record, and I'll get that report. As I posted earlier, wheels are in motion.

In my mind, they seem to roll the dice, betting that people on cpap are too confused to file a complaint.

Agreed, but I'd take that even a step further. I think many "professionals" in this field, i.e., doctors and DMEs, take full advantage of an untreated patient's sleep-deprived confusion and/or general lack of knowledge about the disorder. DMEs are STILL handing out bottom-of-the-line machines to anyone they can convince to take one, and doctors are letting them get away with it. (Not all doctors, nor all DMEs, of course, but enough that it seems to be common practice.) In our untreated state, we're easy marks.

How many times have all of us heard someone say, "If I only knew then what I know now..." when it comes to treatment of a sleep disorder?

Well, I finally received the expanded version of my initial Split-Night PSG today.

I've uploaded three pages of extra graphs. (There are additional charts, but I think you want to see the graphs. Please correct me if I'm wrong.)

The first one (I called it "Extra Graphs") contains Hypnogram, Respiratory Events, Limb Movement Events, SaO2%, Body Positions and CPAP-Bi-Level info. The other two pages are a Cardiac Report with charts and graphs. FYI, the ambient part of the study went from 10:09 p.m. to 1:35 a.m.. Sleep Onset occurred in 17.3 minutes. For this portion of the study, my Sleep Efficiency was 59%; Stage 1 Occurrences, 43; Total Stage Changes (after sleep onset), 100; and Awakenings (after sleep onset), 33.

As always, your input will be appreciated. (And I don't care if you post as Muffy - or anyone else, for that matter.)

http://s675.photobucket.com/albums/vv12 ... %20Graphs/

Your obstructive component improves with CPAP, but your central component just goes through the roof once CPAP is applied. That emergence/worsening of the central component is pretty classic for CompSAS/CSDB---especially in NREM, exactly as you present:



Still look like a poster child...

-SWS wrote:Your obstructive component gets much better with CPAP, but your central component just goes through the roof once CPAP is applied. That emergence/worsening of the central component is pretty classic for CompSAS/CSDB:

<snip>

Still look like a poster child...

Thanks, -SWS. (I didn't think to post the graph right here, like you did. Thanks.)

Yeah, it's pretty shocking seeing all those events going on. I knew how tired I'd been, but actually seeing why is eye-opening. I'm glad I have this extra info to take to the new doctor. And I'm REALLY glad I have a new doctor!



Poster child, eh? Are there any royalties involved in that?

You can probably see that I edited a comment in my post about CPAP-induced central dyregulation being much worse in NREM. That's what gets you on the CompSAS/CSDB poster.

Did any of your doctors mention the possibility of CompSAS/CSDB? That diagnostic possibility puts you in the realm of needing entirely different treatment methods---such as ASV and/or EERS. And it also implies that automatically-adjusting APAP is in all likelihood going to be counterproductive to that unstable etiology (homeostatic instability) associated with CompSAS/CSDB.

No royalties for being on that poster. Good news is you can forge ahead with your next doctor. Make sure your next doctor knows how to recognize and properly manage CompSAS/CSDB.

The oximetry previously presented from 11/12/08 and 3/12/09 showed a baseline that didn't look all that bad:





So my interest in seeing ambient (no PAP) oximetry was to see exactly how bad it was, because frankly, I didn't think it was going to be all that bad.

It's bad.

Well, probably a little beyond bad.

But an important observation is that now oximetry (and respiratory events) have become far more stable despite using similar pressures. I think this example shows (1) how aggressive attack is counterproductive (hey, if you got a string of centrals, chances are they ain't gonna get much better if you continue a staircase titration); and (2) simply allowing time for the body to equilibrate may solve a lot of the central problem.

Muffy

-SWS wrote:Did any of your doctors mention the possibility of CompSAS/CSDB?

Nope, never.

That diagnostic possibility puts you in the realm of needing entirely different treatment methods---such as ASV and/or EERS. And it also implies that automatically-adjusting APAP is in all likelihood going to be counterproductive to that unstable etiology (homeostatic instability) associated with CompSAS/CSDB.

That doesn't surprise me at all. In fact, each time I've used an autopap on a trial basis, it's been hellish. One trial period was so bad, I only kept the machine for three days out of a week; couldn't stand how tired I was with it. That's exactly how I felt with this last auto trial, but I kept at it for the entire week this time because I wanted to be sure there was good data to be had. (It really was akin to torturing myself for a whole week.)

No royalties for being on that poster.

Good news is you can forge ahead with your next doctor. Make sure your next doctor knows how to recognize and properly manage CompSAS/CSDB.

Indeed! I'll be sure she understands what I'm dealing with and that she'll be able to help me get it all under control. I have a great feeling about this new direction I'm finally headed in, with a renewed sense of confidence that I'll be well taken care of from now on. My appointment can't come fast enough!

As usual, many thanks, -SWS.

BTW, do you have the 10/24/2007 oximetry and respiratory events? I can't seem to find it.

Muffy

Muffy wrote:The oximetry previously presented from 11/12/08 and 3/12/09 showed a baseline that didn't look all that bad:

<snip>

So my interest in seeing ambient (no PAP) oximetry was to see exactly how bad it was, because frankly, I didn't think it was going to be all that bad.

It's bad.

Well, probably a little beyond bad.

Great. Thanks, Muffy. Now I've got Michael Jackson stuck in my head...

But an important observation is that now oximetry (and respiratory events) have become far more stable despite using similar pressures. I think this example shows (1) how aggressive attack is counterproductive (hey, if you got a string of centrals, chances are they ain't gonna get much better if you continue a staircase titration); and (2) simply allowing time for the body to equilibrate may solve a lot of the central problem.

Muffy

Okay. A question about (2) above: How much time is "time?" I've been on CPAP since 12/07. Shouldn't I be doing a lot better than I am at this point?

BleepingBeauty wrote:Okay. A question about (2) above: How much time is "time?" I've been on CPAP since 12/07. Shouldn't I be doing a lot better than I am at this point?

Well, to reiterate my two points from before, I think your sleep architecture is marginal at best and seemingly getting a little worse:



It's really getting to be ecch.

And the other point, that sleep instability breeds breathing instability.

So, all concepts of sleep hygiene, hit the track, and consider sleep-stabilizing medications (I said consider!).

Muffy

Muffy wrote:

BleepingBeauty wrote:Okay. A question about (2) above: How much time is "time?" I've been on CPAP since 12/07. Shouldn't I be doing a lot better than I am at this point?

Well, to reiterate my two points from before, I think your sleep architecture is marginal at best and seemingly getting a little worse:

<snip>

It's really getting to be ecch.

Sorry, Muffy dear, but please indulge my sleepy brain here. You said earlier that time should improve things, but now you say it's getting worse. Confusion abounds.

And the other point, that sleep instability breeds breathing instability.

So, all concepts of sleep hygiene, hit the track, and consider sleep-stabilizing medications (I said consider!).

Muffy

I've been practicing solid sleep hygiene for awhile now. No naps, no matter how much I want one. Yawning all day, but not allowing myself to sleep. To bed at a reasonable hour, and getting up about 5-6 hours later, as usual (unfortunately). I've been walking every other day (briskly, for about 40 minutes, with the dog) and eating better than I ever have in my life (less meat, lots more fish, skinless chicken, lots of veggies, no junk, lots of protein, few carbs), but I'm not losing the weight. IDK what else to do.

Re: the medications, as I said before, I'll mention it to the new doc. But I really don't want to go there... I just want the right xPAP therapy so I can feel like a normal person during daylight hours again. *sigh*

Muffy wrote:BTW, do you have the 10/24/2007 oximetry and respiratory events? I can't seem to find it.

Muffy

Sorry, I missed this post earlier.

No, I don't have anything more from the 10/24/07 titration than what I posted on Photobucket. You asked me to get oximetry and resp. events info from the ambient part of the S/N PSG on 10/4, so that's what I asked for on Monday and received today. I can call the lab again on Monday, I guess, to see if there's more from the titration report.

The phone co. is coming out on Monday to repair the faulty jack in my home office (for the third time - pffft!), so maybe the lab can send the additional info to me after (if?) phone service to my fax machine is restored.