Data, at last!

-SWS wrote:

BleepingBeauty wrote: I sure can't afford to purchase a BiPAP AutoSV. That's the "big boy" with a cost of over $5K.

Don't you just wish that deal came around a second time and you had a script in hand:
http://www.cpapauction.com/auction-list ... to-sv.html

BleepingBeauty wrote:I want one!

Now THAT makes a lot more sense than that literary Kindle machine nonsense. Here you are:
http://desc.shop.ebay.com/items/?_nkw=f ... t=0&_rdc=1

OMG. I totally missed this post earlier. (I hate when that happens.) That auction has me drooling (and pissed) that I missed it. $99.50 for an ASV? Holy cow. There's another auction for the same machine at the moment, but the starting price is $2K. Still a bargain, but nowhere near that earlier auction's deal-of-the-century.

I'm anxious to see where my sleep doc stands on an ASV home trial for me, and I'll definitely ask for a scrip for one so that I don't miss out on a great deal like the one you linked to above. Thanks (and phooey!) for pointing out what I missed out on.

BleepingBeauty wrote: Well, I can't argue with that reasoning, since I've been doing well with straight CPAP at 12 cm so far. Maybe I just have to give it more time and see what, if any, patterns emerge with these flare-ups of high AHI numbers. I suppose if it only happened about twice a month, that wouldn't be so bad. Still, it really sucks to be feeling today like I'm back where I started. I don't want to feel like this anymore.

Hey BBeauty! I don't have quite your history, but I have found that I usually have an AHI below 3, with AI .2 or below, but an irregular pattern of a sudden jump in AHI for 1-3 days, and then back to normal. I haven't been able to figure out just what is causing the shifts. My original sleep study showed central apneas, so maybe those are nights when my central dysregulation is bad for some reason. What I HAVE noticed is that since being on the hose for 6 months now, those off days don't hit me as hard as they did at the beginning. I feel like I am slowly building a baseline that has some tolerance for the bad days.

I'm sure it partly depends on how much impact it has on your O2 sats, but there is the possibility you will feel more rested as you adapt. I hope so!

riverdreamer wrote:

BleepingBeauty wrote: Well, I can't argue with that reasoning, since I've been doing well with straight CPAP at 12 cm so far. Maybe I just have to give it more time and see what, if any, patterns emerge with these flare-ups of high AHI numbers. I suppose if it only happened about twice a month, that wouldn't be so bad. Still, it really sucks to be feeling today like I'm back where I started. I don't want to feel like this anymore.

Hey BBeauty! I don't have quite your history, but I have found that I usually have an AHI below 3, with AI .2 or below, but an irregular pattern of a sudden jump in AHI for 1-3 days, and then back to normal. I haven't been able to figure out just what is causing the shifts. My original sleep study showed central apneas, so maybe those are nights when my central dysregulation is bad for some reason. What I HAVE noticed is that since being on the hose for 6 months now, those off days don't hit me as hard as they did at the beginning. I feel like I am slowly building a baseline that has some tolerance for the bad days.

I'm sure it partly depends on how much impact it has on your O2 sats, but there is the possibility you will feel more rested as you adapt. I hope so!

Thanks, riverdreamer.

I have no way of knowing how bad things were going prior to my acquiring this data-capable machine a few weeks ago. I could only guess at my therapy's efficacy by how I felt (which was lethargic most days). I also hope that, after I accumulate a good chunk of time with decent stats, I can better handle those times when my AHI skyrockets for no apparent reason. I've had three bad nights now, with one night's AHI at 24 and two at nearly 15, and I feel like I used to.

I'm seeing the new sleep doc tomorrow, and I hope the visit goes well.

Thanks for the support. I love this place.

Good luck with the new sleep doc tomorrow, BB! I'll be interested to hear how it goes.

BleepingBeauty wrote:Thanks for the support. I love this place.

Well, this place sure seems to enjoy having you here. Good luck with that doc visit tomorrow!

Thanks, twokat and -SWS.

Fingers crossed that I have a better night tonight. I'll post the results of my meeting with the doc tomorrow.

Hoping for the best...

Ok, the update:

I had another bad night last night, and I feel really crappy today. Like I used to.

Saw the doc this afternoon. She had my sleep study on her computer and went over the raw data with me, explaining what each graph was telling her. I was on a straight CPAP titration; no BiLevel, no ASV. Says my breathing throughout the study was normal and even. Few events at pressures of 12, 13 and 14. She sees no signs of CompSAS, so I don't have it. I asked, "What about my earlier sleep studies which DID show it?" She doesn't have access to that raw data, so in her mind, CompSAS is not even in the picture. Then I said, "One night in a lab is a snapshot, and I understand CompSAS can come and go, even though I seem to be adapting to a straight CPAP pressure." She agreed that one night isn't a good overall picture, but unless she sees evidence of CompSAS, it isn't there.

The past four nights of high AHI numbers? Patients focus too much on their data, to their detriment. She thinks I'm anxious about having a bad night, which produces another bad night. I said I go to sleep each night hoping for a good night, not worrying that I'll have another bad one. She says that I'm thinking about it too much, and I'm disturbing my sleep as a result.

She wouldn't agree to an ASV trial at home, nor would she write me a scrip for a machine so I could look for one on my own. That kind of treatment needs to be done with a doctor and, since she doesn't see CompSAS, she wouldn't know how to set the machine for me. Doing it on my own would be dangerous.

What she IS doing is setting me up for an in-home oximetry. She said they're usually just one night, but she's going to try to go for 2-3 nights. Maybe the altitude where I live is an issue. After the oximeter goes back to the DME and the doctor gets the report from them, she'll call me with the results. If the results show that my levels are low enough, she wants me to then try an oxygen bleed and see if that helps.

The doctor said she'd have a copy of my sleep study made for me. As I was leaving, the receptionist handed me one page (part - not all - of the doctor's summary notes). I asked, "Is this all?" "Yep." (Sure glad I got all of it from the lab when I requested it a month ago...)

So that's my update. Are we having fun yet?

Bummer. I would get in trouble for really saying what was on my mind.. Don't you just want to slap them silly when they refuse to listen and chalk everything up to your mind screwing with you?

Did you ever post one of those crappy nights graphs? I don't remember. Maybe there is a clue there?
Brenda

Pugsy wrote:Bummer. I would get in trouble for really saying what was on my mind.. Don't you just want to slap them silly when they refuse to listen and chalk everything up to your mind screwing with you?

Did you ever post one of those crappy nights graphs? I don't remember. Maybe there is a clue there?
Brenda

Hi, Brenda.

No, I haven't posted any of the bad nights' printouts. Here's the worst one:



My leak rate was a little higher than normal, but not so out-of-whack that it concerned me.

She's only practicing medicine by the book, BB. She's clearly not a CompSAS researcher or one to push established protocols.

The problem with CompSAS is that it was only heralded into mainstream sleep medicine in 2005. "Episodic CompSAS flareups?" Most mainstream practitioners were shocked as hell to discover that 15% to 20% of the sleep patients they had been titrating on CPAP presented CompSAS. And right now most of them are utterly clueless that "post-adaptation" CompSAS can so episodically and infrequently crop its ugly head in patients who were supposedly adapted to CPAP.

Hard to believe? Let's take vanilla OSA. Many of those patients have problems with CPAP induced aerophagia. To this day many sleep doctors have never even heard that CPAP pressure can cause aerophagia. Some sleep specialists flat out deny there is even a link between those two. And yet we get so many patients who reliably experience aerophagia the very instant they hit the CPAP power-on button.

So if CompSAS is a largely unexplored and even medically misunderstood condition, where does that leave doctors who narrowly practice medicine by the book? It essentially leaves them with weak answers: your episodes of AHI spikes are basically in your head. Don't you just wi$h $he wa$ half a$ creative, exploratory, and flexible a$ $he $ounded at the initial interview? Now she has extremely narrow blinders and by-the-book technicalities: if she didn't personally see your CompSAS during that one-night glimpse, then you don't have it---and if you do have it, then it must be virtually psychosomatic.

Your entire medical sleep history must be ignored if it did not occur under her watch... and the bill is in the mail, as effortlessly as the diagnosis was performed.

And here's the one from two nights ago:



The leak rate is more in line, but the AHI is still high.

Bummer, about the doc, as Brenda said.

However, the data has hope in it.
Because if you compare this bad night chart with the first, good night chart, the difference in leak rate is mind boggling -- at least to my mind.

First chart:



Furthermore: you can see, in the last data, that the large leaks start before the OA clusters. Its not a case of OA's resulting it leaks.

Editing: I see you've posted a second night. Leaks not that dramatic - but still seem more than on a quiet night.

OK, I knwo the machine is "supposed" to handle leaks - but I would not trust it blindly. I would try to tackle this difference in leaks.


Check the whole circuit -- make sure there's no leak anywhere (humidifier, all connections, etc.).
Be very very concientiuos about cleaning the mask and your face daily/nightly - Dr. Bonner's liquid castille soap gives me the best results.

I would also consider 12-13 range.

O.

-SWS wrote:She's only practicing medicine by the book, BB. She's clearly not a CompSAS researcher or one to push established protocols.

Yes, I can see that.

The problem with CompSAS is that it was only heralded into mainstream sleep medicine in 2005. "Episodic CompSAS flareups?" Most mainstream practitioners were shocked as hell to discover that 15% to 20% of the sleep patients they had been titrating on CPAP presented CompSAS. And right now most of them are utterly clueless that "post-adaptation" CompSAS can so episodically and infrequently crop its ugly head in patients who were supposedly adapted to CPAP.

And yet, she seemed so well-versed in this area of sleep medicine when I first met her.

So if CompSAS is a largely unexplored and even medically misunderstood condition, where does that leave doctors who narrowly practice medicine by the book? It essentially leaves them with weak answers: your episodes of AHI spikes are basically in your head. Don't you just wi$h $he wa$ half a$ creative, exploratory, and flexible a$ $he $ounded at the initial interview? Now she has extremely narrow blinders and by-the-book technicalities: if she didn't personally see your CompSAS during that one-night glimpse, then you don't have it---and if you do have it, then it must be virtually psychosomatic.

It's so distressing. If she thought I was anxious about not getting a good night's sleep before, does she think I'm less anxious NOW? I feel like I'm in a little dinghy on the high seas, with no oars...

Your entire medical sleep history must be ignored if it did not occur under her watch... and the bill is in the mail, as effortlessly as the diagnosis was performed.

Exactly the same kind of crap I got from my ex-doctor. My first two sleep studies (the ones that showed CompSAS so obviously) were not relied upon by him in any way, because they weren't done in HIS lab with HIS equipment and HIS technician. Blinders is an understatement.

If you had a doctor willing to arrange a trial on AutoSV, those heavy apnea clusters are where you would at least hope the SV might normalize CompSAS related respiratory overshoot/undershoot.

You'd experimentally run autoSV applied right on top of that CPAP 12 CM H20 fixed pressure setting. So your doctor thinks an AutoSV experiment in an attempt to normalize those dense apnea clusters is an inherently dangerous experiment?

Let's recap that underlying logic: "It might be dangerous to try and remove those dangerous dense apnea clusters... best to let that kind of danger stand untreated. Besides, they're probably psychosomatic..."


Alright... so she's going to try and treat episodic CompSAS with an oxygen bleed next. How about a little more CO2 instead? What is your sleeping altitude?

ozij wrote:Bummer, about the doc, as Brenda said.

However, the data has hope in it.
Because if you compare this bad night chart with the first, good night chart, the difference in leak rate is mind boggling -- at least to my mind.

I noticed the higher leak rate (and obviously, the line isn't nearly as flat as it was earlier), but I didn't think it was so much higher that it was of concern. Maybe I'm wrong about that.

The doctor's comment, when looking at my printouts, was "Your leak rate looks fine." (My ex-doctor never once mentioned a high leak rate to me, either, even though the printouts from my auto trials showed leak rates in the 40s and 50s every single night. I never saw those until I was no longer his patient and got copies of my records.)

Furthermore: you can see, in the last data, that the large leaks start before the OA clusters. Its not a case of OA's resulting it leaks.

Editing: I see you've posted a second night. Leaks not that dramatic - but still seem more than on a quiet night.

OK, I knwo the machine is "supposed" to handle leaks - but I would not trust it blindly. I would try to tackle this difference in leaks.

Check the whole circuit -- make sure there's no leak anywhere (humidifier, all connections, etc.).
Be very very concientiuos about cleaning the mask and your face daily/nightly - Dr. Bonner's liquid castille soap gives me the best results.

Okay. I'll check every connection tonight and make sure everything's snug and fitting properly.

I would also consider 12-13 range.

O.

You mean run the machine in true Auto mode, with 12 and 13 as min/max pressures? I'm kinda leery about running in Auto mode with this machine, since I know the Respironics algorithm didn't work well for me during four trial periods (although the range during those trials was much wider than one cm; most recent one ran from 7-14). I certainly respect your opinion, ozij, but I'd love to hear from a few others on this subject (like -SWS, Muffy, rested gal) before I attempt it.

Thanks.