What should I tell the sleep doc?

Wulfman · Post by **Wulfman** » Wed Apr 30, 2008 6:05 am

ww wrote:
Wulfman wrote: Don't try to tweak your pressure settings for AHIs of 0.0......it won't happen......at least on a regular basis and you might not sleep well there, either.
Does this mean that is unreasonable to expect apneas to be very close to zero each night?

That's exactly what I mean. Remember, too....that these machines' event detection is based on "air flow". They're not perfect and you can have false positives. If you cough or clear your throat it might think it's a snore. If you turn over in bed frequently your breathing might cause it to think that you're having a flow limitation, hypopnea or apnea. Leakage can also affect the detection.
I can tell you that from my observations over the last three years, that some nights when I have a 1.5 AHI, I can tell that I slept more deeply than when I have < 0.5 AHIs. This is another reason I like straight pressure. If "all things are equal", you can notice the changes of how you slept in your charts......along with how you feel.

I also think your thoughts about Bi-PAP are not necessarily realistic. If you can get good sleep from a CPAP or APAP machine, WHY would you feel the need to spend many more times the price for a different machine?
And, an Auto Bi-PAP can't be configured to run like an Auto CPAP (APAP).

Den

Guest · Post by **Guest** » Wed Apr 30, 2008 6:07 am

Relax ! Everyone's said that the goal is not to necessarily reduce to zero (very few of us achieve that on anything but the odd-night basis), under 5 is usually just fine and if you feel fine, 99% odds are that you are fine - you're going to defeat the purpose of feeling good by wracking your brain about this.

KansasRT · Post by **KansasRT** » Wed Apr 30, 2008 8:35 am

I agree that the data is very important, but if the data means that you are spending hours a day worrying and analyzing and posting here abut your data because your AHI is high than maybe you need to take a step back. CPAP treatment for sleep apnea is supposed to make life better. In the end all the data in the world is not as important as how you feel. I have patients that feel great with an AHI of 5. I have other patients that feel horrible when their AHI gets above 2. It is all very subjective. Please give yourself a break and think about how you really feel instead of what the numbers say.

ww · Post by ww » Wed Apr 30, 2008 9:29 am

jules wrote: Some sleep docs are willing to hear out patients and some aren't. Some are willing to accept patients adjusting machines and some will fire the patient for doing it.

It was the sleep doc that scheduled the appointment, but it may have been caused by my asking for a copy of the detailed sleep report with graphs. I finally also got a copy of his script and it was the ResMed S8 Elite with HumidAire 32 and Mirage Swift Pillows, none of which the DME furnished as they only stock Respironics. I asked them for an auto CPAP and they changed everything to Respironics and told me they didn't have the Swift mask. I believe they got the change authorized through my regular doctor rather than the sleep doctor.

So if they are going to react negatively, then should I just hear them out and not show him how much improvement the pressure increase change made vs the titrated value?

ww · Post by ww » Wed Apr 30, 2008 9:46 am

Wulfman wrote:And, an Auto Bi-PAP can't be configured to run like an Auto CPAP (APAP).

I didn't realize that a Respironics Auto Bi-pap could not be set up to operate the same as the Auto CPAP or straight CPAP. I seem to swallow a little air each night and with cflex=3 it is better, but still there. I really thought the Respironics Auto Bi-pap with biflex could help this and with the larger difference in pressure between inhale and exhale would also be easier to exhale at higher pressures. What features are missing in the Auto Bi-pap?

Wulfman · Post by **Wulfman** » Wed Apr 30, 2008 9:55 am

ww wrote:
Wulfman wrote:And, an Auto Bi-PAP can't be configured to run like an Auto CPAP (APAP).
I didn't realize that a Respironics Auto Bi-pap could not be set up to operate the same as the Auto CPAP or straight CPAP. I seem to swallow a little air each night and with cflex=3 it is better, but still there. I really thought the Respironics Auto Bi-pap with biflex could help this and with the larger difference in pressure between inhale and exhale would also be easier to exhale at higher pressures. What features are missing in the Auto Bi-pap?

A Bi-PAP machine CAN be set up to operate as a straight CPAP machine.....IPAP and EPAP would be set to the same pressure setting in straight Bi-PAP mode.

If aerophagia is a problem.....THEN, you might have some ammo to get a prescription for a Bi-PAP. The qualifiers to that are that you might have to still trial the CPAP/APAP machine first and then have a titration for a Bi-PAP machine (yeah, another sleep study) because they would need to determine the IPAP and EPAP settings for your prescription.

Den

oceanpearl · Post by **oceanpearl** » Wed Apr 30, 2008 10:17 am

Tell him that he don't know crap and that you will get all the information and diagnosis you need on CPAPTALK,COM!!

roster · Post by **roster** » Wed Apr 30, 2008 3:12 pm

oceanpearl wrote:Tell him that he don't know crap and that you will get all the information and diagnosis you need on CPAPTALK,COM!!

Ditto.

The doc is just needed to write prescriptions so the insurance will pay.

ww · Post by ww » Wed Apr 30, 2008 4:28 pm

Anonymous wrote:Relax ! Everyone's said that the goal is not to necessarily reduce to zero (very few of us achieve that on anything but the odd-night basis), under 5 is usually just fine and if you feel fine, 99% odds are that you are fine - you're going to defeat the purpose of feeling good by wracking your brain about this.

Thanks Julia,
I spent most of my life as a design engineer, so wracking my brain comes a whole more natural than accepting everything at face value just because a doc said so! I still have concerns and questions and is sure is nice knowing all of these nice people will take their time to help. Hope someday I can do the same!

ww · Post by ww » Wed Apr 30, 2008 4:37 pm

KansasRT wrote:I agree that the data is very important, but if the data means that you are spending hours a day worrying and analyzing and posting here abut your data because your AHI is high than maybe you need to take a step back. CPAP treatment for sleep apnea is supposed to make life better. In the end all the data in the world is not as important as how you feel. I have patients that feel great with an AHI of 5. I have other patients that feel horrible when their AHI gets above 2. It is all very subjective. Please give yourself a break and think about how you really feel instead of what the numbers say.

Actually, it takes very little time, because the Respironics units sometimes don't record anything. They recorded absolutely nothing last night, maybe because the card was not back in the machine by noon. Who knows.

A lot of things are DEFINITELY better (high blood pressure and the medicine for it have gone away!!!), although there are a few things that I would like to know if they could also be improved. I seem to swallow a little air each night, and wondered if an auto bi-pap would help this and not mess up anything else? I don't think I would want to own anything other than an auto machine after using this one. Insurance is not a critical concern as they seem to run from $900 to $1225 being the old tank style or the "new" M series which figures out about $20/month, and it would not be hard to get this much good out of it.

ww · Post by ww » Wed Apr 30, 2008 6:50 pm

rooster wrote:
oceanpearl wrote:Tell him that he don't know crap and that you will get all the information and diagnosis you need on CPAPTALK,COM!!
Ditto.

The doc is just needed to write prescriptions so the insurance will pay.

Maybe that's what makes some of the doc's fire their patients that adjust their own machines. Seriously, Rooster, didn't you come to terms with your sleep doc?

roster · Post by **roster** » Wed Apr 30, 2008 7:12 pm

ww wrote:
rooster wrote:
oceanpearl wrote:Tell him that he don't know crap and that you will get all the information and diagnosis you need on CPAPTALK,COM!!
Ditto.

The doc is just needed to write prescriptions so the insurance will pay.
Maybe that's what makes some of the doc's fire their patients that adjust their own machines. Seriously, Rooster, didn't you come to terms with your sleep doc?

I fired the first two sorry docs. Kept them way too long and suffered under their advice. Their sleep labs used very young, lightly experienced technicians and were a big part of the docs' problems.

The third one and I are still working to come to terms. I have also seen a fourth one. Time will tell if one of these two and I can coexist.

The third one wanted to tell me how she expected her patients to behave. I told her in no uncertain terms what I was struggling with each night. She changed her mind and told me to continue on with my plan. She also said that she was not pleased with the work her technician did titrating me. That was the last discussion we had and it encouraged me. Previous docs defended their lab no matter what. Surprise! This one was critical of her lab and told me she demands better from them. Maybe I will make an appointment and have another discussion with her in the next few months.

BTW, my first doc is a very nice guy and I really liked chatting with him. I would not at all mind having him and his family as neighbors and friends. But not him as a sleep doc!

ww · Post by ww » Wed Apr 30, 2008 8:40 pm

oceanpearl wrote:Tell him that he don't know crap and that you will get all the information and diagnosis you need on CPAPTALK,COM!!

Although I realize you are kidding, it is very disturbing that so much of this appears to be true. The original script was for 7 cm CPAP and when I insisted on a data capable APAP the DME made a couple of phone calls to get the script changed for the APAP. I have not met the sleep doc, but I could have been setting here for six weeks getting almost no therapy at the delivered settings (which took 2 more weeks), looking back on it and not knowing why the titrated data was so wrong or why the APAP was set to 5 min 10 max with a titrated value of 7 cm CPAP and it appears the correct value is much closer to 10.5 or 11 cm. The APAP kept increasing until it hit the top and missed a lot because it took so long to get there. I can't change the facts, but would like to understand why things work out the way they do.

I happened to be one that felt something was wrong and investigated it, but most people would not have and with the sleep doctor and DME 75 miles away, it is harder to solve these problems in person.

Slinky · Post by **Slinky** » Wed Apr 30, 2008 9:18 pm

Welcome to the world of sleep apnea therapy. The sleep docs rely on the local DME suppliers to provide the education, support and advice. And too many local DME suppliers don't have the personnel or interest to provide the education, support and advice needed. Too many sleep docs don't take any interest or even bother to see the patients they script therapy for. Then "they" wonder WHY there is such a dismal compliance rate??? Duh.

ozij · Post by **ozij** » Wed Apr 30, 2008 9:53 pm

Two possible benign reasons for having a low recommended pressure during PSG:

Sleeping there is so strange that you simply don't sleep deeply enough. Your airway doesn't collapse as badly as when you're asleep, and nobody in the lab knows how bad things can get.

Another possible explanation (this is based on birdshell's recent post): Snoring swells your airways. After a while on the right pressure, you no longer snore, the tissues are floppier, and more pressure is now needed to maintain patency.

O.