A Question re: my AUTOPAP Trial

[BleepingBeauty]

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?

I'll mention the pulmonary testing to the new doctor. My first two sleep studies (in late 2007) were done in Phoenix (elevation of about 1,100 feet). I live in the mountains, at about 4,700 feet. My third and fourth studies were done in my doctor's lab at about 5,000 feet.

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).

The ASV question is already on my list. I'm not sure what short-cycle and long-cycle means; I've done a little research on CompSAS since I joined the forum here, but I'm so tired, I'm having a hard time comprehending it all and am not retaining the info as well as I should. I asked the receptionist I spoke with whether the doctor utilizes ASV's, but she said that's something I'd have to discuss with the doctor. A consultation is scheduled for a full hour, which is good news; I always feel like my current sleep doctor is in a rush to shoo me out.

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

I'm not a pill-taker by choice, but I'll ask about it.

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

I'll have no problem using straight CPAP, if that's what this new doctor tells me is best for me. If that's the case, my only demand will be an upgraded machine with full data capability. I'll be more than happy to discuss my progress with an interested doctor, but I want and need to be able to monitor my own treatment to determine what works best for me.

As an aside, I can't wait to return this loaned Autopap machine tomorrow. I haven't felt this tired since before I started CPAP therapy. After a week of what feels like useless therapy from this loaner and repeatedly talking myself out of just abandoning it in favor of my plain old CPAP at 14 cm, I'm ready to rumble with my doctor's office. If I don't get the right answers to my questions tomorrow morning, I'll have to try very hard to keep my head about me and hold my tongue, or I'll fire him on the spot, before I even see the new doctor. I'm in no mood...

Thanks, SAG. I'm taking notes from you and others.

[StillAnotherGuest]

I'll mention the pulmonary testing to the new doctor.

I think she's gonna beat you to the punch.

My first two sleep studies (in late 2007) were done in Phoenix (elevation of about 1,100 feet). I live in the mountains, at about 4,700 feet. My third and fourth studies were done in my doctor's lab at about 5,000 feet.

High altitude can acutely generate a form of central apnea called High Altitude Period Breathing. This is usually associated with elevations of 10-15,000 feet (interestingly, this an area that Dr. David P. White did ground-breaking work with HAPB and sleep way back when)(he wasn't always in Boston, y'know)(as you learn more about CompSAS, you'll learn more about Dr. White)(SAG has taken more to saying CompSAS not because it's more popular, but because he will often exchange CSBD with CSBD when he refers to (wait, lemme check) "complex sleep-disordered breathing")(most otters are dyslexic).

BTW, that's a very important concept (it's sleep-disordered breathing, not the other way around), so remember that

Sleep instability breeds breathing instability.
Sleep instability breeds breathing instability.
Sleep instability breeds breathing instability.

Sleep instability.

Breeds breathing instability.

Which is why zolpidem would be on the table, not to "knock you out" per se, but to "stabilize sleep".

Also, altitude lowers oxygen levels, as depicted in the following graph:



but your O2 sat is still a little bit too low to blame it all on altitude.

BTW, while High Altitude Periodic Breathing is usually associated with lower oxygen levels (the urge to breath, which is normally generated by carbon dioxide, now becomes heavily influenced by oxygen instead) SAG wonders if the role of carbon dioxide must also play a role, since that must also drop a bit, and could seem to easily dip under the apnea threshold and create central disturbance.

Hmmm. I think this thread is going to take a while. Every time another rock is overturned, another bunch of things come crawling out.

I'm not sure what short-cycle and long-cycle means; I've done a little research on CompSAS since I joined the forum here, but I'm so tired, I'm having a hard time comprehending it all and am not retaining the info as well as I should.

OK, that won't be important unless you go on ASV and use the Respironics machine.

As an aside, I can't wait to return this loaned Autopap machine tomorrow.

Are you going to get the download right away (bring a memory stick)? If not, you could just grab the card and run, I'm sure there's someone around here (give or take 958 miles) that would do a report if you mailed it to them.

I haven't felt this tired since before I started CPAP therapy.

SAG told you CDBS don't like APAP automatic dial-wingin'.

After a week of what feels like useless therapy from this loaner and repeatedly talking myself out of just abandoning it in favor of my plain old CPAP at 14 cm, I'm ready to rumble with my doctor's office. If I don't get the right answers to my questions tomorrow morning, I'll have to try very hard to keep my head about me and hold my tongue, or I'll fire him on the spot, before I even see the new doctor. I'm in no mood...

Yikes! For the first time on this board, SAG has fear in his heart!

Don't do anything brash (or is it "rash"? Nah, that's something you need to put salve on.) We don't have bail money, and it'll take a while to come up with the cash with our "buckwheat hulls" roadside stand.

SAG

[StillAnotherGuest]

And why are you up this early?

If it's 6:36 AM here, it must be about 4:00 AM over there.

SAG

[BleepingBeauty]

High altitude can acutely generate a form of central apnea called High Altitude Period Breathing. This is usually associated with elevations of 10-15,000 feet (interestingly, this an area that Dr. David P. White did ground-breaking work with HAPB and sleep way back when)(he wasn't always in Boston, y'know)(as you learn more about CompSAS, you'll learn more about Dr. White)(SAG has taken more to saying CompSAS not because it's more popular, but because he will often exchange CSBD with CSBD when he refers to (wait, lemme check) "complex sleep-disordered breathing")(most otters are dyslexic).

First, good morning. (It's definitely NOT a good morning for me, but that's the polite thing to say. So there, I said it.) I woke up abruptly at 3:00 a.m. with a pounding headache, so I got a whole 4.5 hours of "sleep" last night. Woohoo! (/sarcasm)

Thanks for the info on Dr. White. I'll keep my tired eyes on the lookout for his name.

BTW, that's a very important concept (it's sleep-disordered breathing, not the other way around), so remember that

Sleep instability breeds breathing instability.

Which is why zolpidem would be on the table, not to "knock you out" per se, but to "stabilize sleep".

Well, as I said before, I'm not a pill-taker by choice, and it seems to me that drugs like that one are pretty much utilized to help people with insomnia. I'd prefer to tackle this without drugs, but I'm open to what the new doc has to say.

Also, altitude lowers oxygen levels, as depicted in the following graph:

<snip>

but your O2 sat is still a little bit too low to blame it all on altitude.

BTW, while High Altitude Periodic Breathing is usually associated with lower oxygen levels (the urge to breath, which is normally generated by carbon dioxide, now becomes heavily influenced by oxygen instead) SAG wonders if the role of carbon dioxide must also play a role, since that must also drop a bit, and could seem to easily dip under the apnea threshold and create central disturbance.

I don't know this for sure, of course, but I don't think the altitude is the problem. It's something that I'll bring to the new doctor's attention, though.

Hmmm. I think this thread is going to take a while. Every time another rock is overturned, another bunch of things come crawling out.

I'm not sure what short-cycle and long-cycle means; I've done a little research on CompSAS since I joined the forum here, but I'm so tired, I'm having a hard time comprehending it all and am not retaining the info as well as I should.

OK, that won't be important unless you go on ASV and use the Respironics machine.

Okay, good. I trust you'll remind me of this distinction if/when it becomes relevant, since I'm not able to grasp it very well at the moment.

As an aside, I can't wait to return this loaned Autopap machine tomorrow.

Are you going to get the download right away (bring a memory stick)? If not, you could just grab the card and run, I'm sure there's someone around here (give or take 958 miles) that would do a report if you mailed it to them.

I told the doctor's office that I want a copy of the data printout before I leave the office. I have no idea what the printout looks like, so I was just planning on scanning and uploading it. Should I bring a CD with me? I don't own a memory stick, whatever that is.

I haven't felt this tired since before I started CPAP therapy.

SAG told you CDBS don't like APAP automatic dial-wingin'.

I guess it's clear that SAG knows what he's talkin' about. (For the record, my body is in total agreement with you. It doesn't like this autopap at all. I don't know if that statement holds true across the board re: autopap or if it's true simply because this machine wasn't set properly for my therapy needs.)

After a week of what feels like useless therapy from this loaner and repeatedly talking myself out of just abandoning it in favor of my plain old CPAP at 14 cm, I'm ready to rumble with my doctor's office. If I don't get the right answers to my questions tomorrow morning, I'll have to try very hard to keep my head about me and hold my tongue, or I'll fire him on the spot, before I even see the new doctor. I'm in no mood...

Yikes! For the first time on this board, SAG has fear in his heart!

Don't do anything brash (or is it "rash"? Nah, that's something you need to put salve on.) We don't have bail money, and it'll take a while to come up with the cash with out "buckwheat hulls" roadside stand.

SAG

The only one who should have fear in his heart this morning is my doctor. And don't worry about bail money; if anyone hauls me off, it'll be the guys with the white jackets and the butterfly net, because I'll be screaming/crying/bleeping in frustration. With 4.5 hours of crappy sleep under my belt from last night, coupled with the deprivation I've been feeling all week, I'm on the brink of losing what's left of my mind.

The doctor's office staff would be wise to tiptoe around me very lightly today... Pray for them.

[StillAnotherGuest]

I told the doctor's office that I want a copy of the data printout before I leave the office. I have no idea what the printout looks like, so I was just planning on scanning and uploading it. Should I bring a CD with me? I don't own a memory stick, whatever that is.

A memory stick is a thing like this. You can usually find 'em on sale for about 9.99 for a gig. Then you can get the real download as well as the complete printed report as a .pdf file.

Remember the story about flies, vinegar and honey, honey.

SAG

[BleepingBeauty]

I told the doctor's office that I want a copy of the data printout before I leave the office. I have no idea what the printout looks like, so I was just planning on scanning and uploading it. Should I bring a CD with me? I don't own a memory stick, whatever that is.

A memory stick is a thing like this. You can usually find 'em on sale for about 9.99 for a gig. Then you can get the real download as well as the complete printed report as a .pdf file.

Remember the story about flies, vinegar and honey, honey.

SAG

Thanks for the link. Now I know what it looks like, at least. In the meantime, since I don't own a memory stick, I'll bring a CD with me, even though I asked for the printed data.

And yes, I know I should be polite and all when I encounter these people, but I'm so damned tired that I may not be able to pull that off if I find that this whole week has been an exercise in torture (if the settings were screwed up) and not at all productive. As I said before, I'm in no mood...

As to my sleep hygiene, this morning is not representative of the norm, for me. I usually sleep til 5:00 or 6:00 a.m., but the headache got me up at 3:00 today. The machine was only pushing 7 cm at the time, so it's not surprising. *sigh*

[StillAnotherGuest]

Well, I guess if you don't have a memory stick (which you should have had if you had a digital camera), then you don't have a reader either, so if you're looking for a cheap way to transfer files, then get a flash drive, which are so cheap now some vendors just hand 'em out for nothing with their sales pitch on 'em.

SAG

[BleepingBeauty]

Well, I guess if you don't have a memory stick (which you should have had if you had a digital camera), then you don't have a reader either, so if you're looking for a cheap way to transfer files, then get a flash drive, which are so cheap now some vendors just hand 'em out for nothing to push their wares.

SAG

I'm not sure how my addled brain remembered this, but I do have a digital camera, and I remember purchasing a much larger memory stick for it a few years ago (I didn't know that's what it was called). I kept the old one, which is 16mb, and I found it a few minutes ago, so I'll take that with me.

If I have them put the data on the memory stick, can I put that in my camera and then upload the report to my pc? Or should I bring a CD with me?

I'll be leaving in about 30 minutes and will check for an answer before I go. Wish me luck...

[StillAnotherGuest]

No, you need the reader/writer to do that (it turns a memory stick into a flash drive, it's a very handy way to process your photos), but we'll hold on that story for a bit.

Either use the CD or make sure you get the "Full Details" on the printed report.

SAG

[BleepingBeauty]

No, you need the reader/writer to do that (it turns a memory stick into a flash drive, it's a very handy way to process your photos), but we'll hold on that story for a bit.

Either use the CD or make sure you get the "Full Details" on the printed report.

SAG

Will do. Thanks, SAG. I'll report back later, after I clean myself up (blood and guts and stuff...)

[-SWS]

USB ports are on most computers these days. So another option would be to just get a USB memory stick:


BB, it's not that the rest of us aren't interested in your thread. We've had some very unwieldy CompSAS/CSDB threads in the past---with so many chefs in the kitchen that the benefactors had difficulty following. SAG's SDB culinary skills are shining through, as they often do. So many of us undoubtedly prefer to sit back and watch as this thread neatly unfolds, in its current very promising direction.

I will add to what SAG said earlier about APAP and CompSAS/CSDB not always being a great pair up: generally speaking, APAP is thought to be the worst treatment modality for CompSAS/CSDB. APAP tends to exacerbate respiratory dyscontrol in CompSAS/CSDB patients more than the other treatment platforms. Sometimes that dyscontrol manifests subtly on the overnight charts or measurement benchmarks, yet with disproportionate followup symptoms of discomfort, fatigue, and/or excessive sleepiness.

Nice, productive thread! Good luck, BB... we're following along!

[ozij]

Right.
I'm lurking.
O.

[jules]

full details - report should be about 10 -12 pages long - one page for each session and a bunch of crappy summary data - you want to make sure you get all the ones that look like

[BleepingBeauty]

Thanks, guys and gals. I'm glad to know you're following along and are interested in my progress. I sincerely hope I'm on the road to some serious progress with the new sleep doctor. In the meantime, I'm very much looking forward to sleeping with my trusty old CPAP tonight, with 14 cm of pressure all night, after the week of torture that's been imposed on me with this awful AutoPAP trial.

I'm too tired right now to go into many details, but there were no fireworks today. In fact, they beat me to the punch (da bastids! ) I was really looking forward to telling them what I think about their "care," but I guess they have a pretty good idea about that already! (Read on.)

I handed over the APAP and they handed me a letter, discontinuing their service to me as a health care provider. They've been reading this forum (HA! Infamy is mine, at last! ), and they're not too happy with what I've been saying about them. They made some claims in the letter that are just flat out untrue, citing posts of mine as saying one thing when they clearly say just the opposite (to anyone whose reading comprehension skills are up to par, anyway), stating that they've tried diligently to work with me to solve my compliance issues (which don't even exist, and they know it; I've used my machine every single night since I received it in 2007, and they have records to prove my compliance). But it was a nice CYA letter, as these things go. And it's just as well, since I was ready to fire him today, anyway.

I got copies of my records, and there are more detailed charts included than they've ever made me privy to before (ones like what jules posted above), along with detailed notes about my sleep studies. They're eye-opening, to say the least. My study in November says "Tolerated ASV: Great" (I didn't even know I'd been on an ASV unit, nevermind that I tolerated it so well.) My most recent study (last month) says, "Tolerated CPAP: Good" To the layperson in me, that says that ASV works better for me (or at the least, it worked better for me that night). So I just don't understand the reluctance or resistance to providing the kind of therapy that works best.

As to the subject of this whole thread, they said they'll mail the detailed printouts to me.

So that's the update I can provide at the moment. I'm sure I'll be up for more detailed discussion tomorrow, when I've had my first decent night's therapy in a week. I'm going to have some dinner, give some attention to the pets, and then I'll be dragging my very tired butt into bed very early. You guys can let me know what I should scan and upload from my (now more complete) records. I'll check back in before I hit the hay, in case anyone has specific questions for me.

Thanks, all.

[StillAnotherGuest]

They've been reading this forum ...

No.

Really?

Did you ask if they had any opinion on buckwheat hulls?

SAG