A Question re: my AUTOPAP Trial

[jules]

snoring is just vibrations being picked up by the machine - I can get a streak of snores by rubbing my hose against the shelves next to the bed - did it one night - got a nice streak of snores - was wide awake at the time - there they are

[BleepingBeauty]

And what's with the snoring while I'm wearing a chinstrap? How can that happen?

I can deliberately make loud snore sounds inhaling through my nose with mouth closed. Can do that sitting wide awake right here at the computer. Sorry to admit that, but I can.

Well, I just tried that, myself, and you're right! (And I'm glad I live alone... )

On another note, the Clinical Director's chirpy "good news" ....

I called the doctor's office this morning to find out if they had mailed me the detailed report yet, since I returned the machine to them six days ago. The Clinical Director got on the phone and told me that the "good news" is that the report indicates that I'm at the right pressure of 14.

... is laughable for several reasons, not the least of which is when you look at how you were hitting 14 for long periods EVERY night (except the last short night's short session) and were still racking up a long term average AHI of 13.4.

If the machine's maximum pressure had been set higher, there's no telling where you'd have finally bumped your head each night, and what Ms Clinical Director would have declared to be "the right pressure."

It really is a good thing you'll be seeing a new doctor soon.

Yes, it is!

[BleepingBeauty]

snoring is just vibrations being picked up by the machine - I can get a streak of snores by rubbing my hose against the shelves next to the bed - did it one night - got a nice streak of snores - was wide awake at the time - there they are

Thanks for posting that graph, jules. I can't wait for mine to look like yours (and those of others here, whose treatment is successful).

[BleepingBeauty]

A very brief rundown, for those unfamiliar with my saga:

I was diagnosed in late 2007 (see my signature below). I've had two sleep doctors tell me that I didn't need an ASV machine, and neither would prescribe one so that I could buy it myself - nor would either of them write a script to let me even trial one.

Long story short, it's been 26 months of therapy (the first 19 with an M Series Plus and the following 7 months with an M Series APAP, which I also found on CL for very low money, btw). Since I joined the forum last April and got some valuable insight here re: my sleep studies, I've been searching for a BiPAP Auto SV on CL. It's taken literally months of searching every CL city, but I finally found my new best friend listed for sale in upstate NY on January 6th, and I received it on the 14th.

I've used it for five nights now - the first two with settings of 12cms across-the-board (my titrated pressure), and the past three nights with Respironics' recommended settings of EPAP 12, IPAPmin 12 and IPAPmax 22. I was a bit anxious about how the ASV works and worried that the intense pressure increases it delivers might really disturb my sleep. But the pressure transition is extremely smooth, and I haven't woken up once (even though the machine raises the pressure quite a bit at times, as you'll see below). So far, I'm LOVING it.

My first two nights at 12/12/22 settings were awesome. I slept right through the night, no breaks for the bathroom, no disturbance from the pressure changes, etc. Last night, I was restless for some reason, and that's reflected in the data. Oh, well. Bad nights happen to everyone.

Here are the first two charts, with 12/12/12 settings.

Thursday:


Friday:


And now the three charts with 12/12/22 settings. What really blew me away are the differences in (1) periodic breathing, (2) AHI, and (3) how high the pressure goes to keep me breathing steadily. After 26 months at 12cms, I'm amazed that I can handle these much-higher pressures without even noticing.

Saturday:


Sunday:


Last night:


As you can see on the last chart, I spent some time at the ceiling of 22cms in the middle of the night (which coincides with Large Leak, which I've never seen on any of my reports before); but considering I'm accustomed to (and my mask is adjusted for) 12cms of pressure, I think it's understandable. Can't win 'em all.

Since this kind of data is new to me, I'm not sure what to make of some of it (Tidal Volume, Peak Flow, Breaths Per Minute). I don't know what any of them should be, so I don't know if any changes are needed. If anyone has insight on these (or other pertinent) matters, please share.

Oh, and I've decided to name my new pal "Houdini" because, so far, it's like magic!

[DoriC]

Hi BB, thanks for the update on your new "fancy" machine and that you're LOVING IT!. I'm wondering what made you decide on this type of cpap? And when you find out what all that other stuff means, I'd be interested to know. In the meantime, sweet dreams! Dori

[KatieW]

Bleeping Beauty, this is very good news. I'm happy for you. Sleep well.

[BleepingBeauty]

Hi BB, thanks for the update on your new "fancy" machine and that you're LOVING IT!. I'm wondering what made you decide on this type of cpap? And when you find out what all that other stuff means, I'd be interested to know. In the meantime, sweet dreams! Dori

Hi, Dori, and thanks!

Before I joined the forum and began my xPAP education, I had no idea ASV even existed, nevermind that it's likely the machine to treat my original diagnosis. That was the consensus among the veterans here. When I started seeing my new sleep doc (#2), about a month after that, I asked about ASV, but she didn't think I needed it and has kept me on fixed pressure at 12cms. In fact, she was nonplussed when I bought my APAP on CL in June, so I could get data. (What is it with sleep doctors who prefer that we users be kept in the dark about our therapy???)

Considering I have more trust and confidence in the vets here than I do either of the sleep docs I've had the "pleasure" of dealing with so far, I listened to their analysis of my sleep studies. So I really wanted to know if ASV was right for me, and I started searching for a BiPAP Auto SV on CL. (The only reason I was looking specifically for the Respironics ASV is because I've been using Respironics machines from the get-go, and I have the software and reader already. But if I'd found a ResMed ASV, instead, I'd have tried that one.) Unfortunately, these high-end machines don't pop up on CL often, and I got very lucky.

Bleeping Beauty, this is very good news. I'm happy for you. Sleep well.

Thanks, Katie. So far, so good.

[BleepingBeauty]

I was reminded to update this thread again with some data from the ASV I got in January. Now that I've been using "Houdini" for almost two months, it's a good time.

Just as a reference, my last five nights at 12cms fixed pressure resulted in an AHI of 4.7, 6.7, 2.2, 5.5, and 4.2. I bought an APAP last summer so I could finally see my data, and I experimented a few times with narrow pressure ranges near the end of the year. But I never felt nearly as rested - either at fixed pressure or with a narrow pressure range on the APAP - as I do now. (Further testament - in my mind, anyway - that neither of my sleep doctors prescribed the right treatment for me, and I wasted a lot of time with ineffective therapy.)

But that's history, and I'm finally getting the kind of therapy I needed all along, thanks to the information provided by this forum and my own determination to find and buy an ASV on CraigsList.

Here are the graphs from the past three nights:

Sunday:


Monday:


Last night:


I've been considering lowering the range to 9/9/19, since I never see the pressure go to 20 and I seem to spend a fair amount of the time at or near the low end. But there's no urgency to change anything, as I'm feeling really good and have no problems with the current settings.

Comments or advice will be appreciated, as always.

[JohnBFisher]

... But that's history, and I'm finally getting the kind of therapy I needed all along, thanks to the information provided by this forum and my own determination to find and buy an ASV on CraigsList. ...

It's a real shame you did not get this type of support from your sleep doctors. Doctors without ANY knowledge hang out a shingle that says "sleep" doctor. And unfortunately all it really means is they sleep through what you and the sleep lab tell them.

But you are now finally getting very effective therapy. Good for you.

... I've been considering lowering the range to 9/9/19, since I never see the pressure go to 20 and I seem to spend a fair amount of the time at or near the low end. ...

I would leave it "as is". Why? Well, you don't seem to show any indication of increased apneas as the pressure increases. So, you appear to not have issues with Complex Sleep Apnea. Instead you appear to have issues with periodic breathing (more on that in a moment). I've seen a few instances when the backup rate kicks in ... and helps you remember to breathe. So, since you are not pressure sensitive it is best to allow the machine to assist you as much as possible. As I understand it, in effect the high pressure appears to help shift the unit from splinting open the airway to providing ventilation support. It's not as much as a full ventilator. But it DEFINTELY allows your body to continue to absorb O2 instead of using up the O2 in your lungs. Thus, it allows your body gets back to normal operation.

Now, on the periodic breathing. Have you seen a cardiologist? Or have you had your General Practioner (GP) (or Primary Care Physician - PCP) screen you for any cardiac issues? Has your GP (or PCP) screened for normal kidney functions? Problems with the heart are the most common underlying cause of periodic breathing. Issues with your kidneys appear to be the second most common cause of periodic breathing.

As is always the case, while I am happy to see folks getting good therapy, it is important to keep your medical team in the loop. Well, at least the part of the team that demonstrated they are listening!

Please don't panic. I'm definitely not a medical professional. Nor am I being an alarmist. I am just letting you know what I would do. And I do not want you to miss the chance to address something that can be caught and handled early.

Hope that helps.

[BleepingBeauty]

... But that's history, and I'm finally getting the kind of therapy I needed all along, thanks to the information provided by this forum and my own determination to find and buy an ASV on CraigsList. ...

It's a real shame you did not get this type of support from your sleep doctors. Doctors without ANY knowledge hang out a shingle that says "sleep" doctor. And unfortunately all it really means is they sleep through what you and the sleep lab tell them.

But you are now finally getting very effective therapy. Good for you.

Thanks, John. Yes, it IS good for me! Effective therapy has been a long time coming, after two years of crappy results at fixed pressure (most of it with a Plus machine, of all things, considering my diagnosis!). And FWIW, both of the sleep docs I've seen have been practicing for a number of years and seem to be well educated and highly-regarded. Go figure.

... I've been considering lowering the range to 9/9/19, since I never see the pressure go to 20 and I seem to spend a fair amount of the time at or near the low end. ...

I would leave it "as is". Why? Well, you don't seem to show any indication of increased apneas as the pressure increases. So, you appear to not have issues with Complex Sleep Apnea. Instead you appear to have issues with periodic breathing (more on that in a moment). I've seen a few instances when the backup rate kicks in ... and helps you remember to breathe. So, since you are not pressure sensitive it is best to allow the machine to assist you as much as possible. As I understand it, in effect the high pressure appears to help shift the unit from splinting open the airway to providing ventilation support. It's not as much as a full ventilator. But it DEFINTELY allows your body to continue to absorb O2 instead of using up the O2 in your lungs. Thus, it allows your body gets back to normal operation.

I have no problem with the current settings, as I'm sleeping soundly, dreaming every single night (!), and I never notice any of the pressure changes. That was the one aspect of how the ASV works that concerned me at first, after being at a fixed pressure for over two years; but it hasn't been a problem at all and, in fact, has proven to be very effective.

Now, on the periodic breathing. Have you seen a cardiologist? Or have you had your General Practioner (GP) (or Primary Care Physician - PCP) screen you for any cardiac issues? Has your GP (or PCP) screened for normal kidney functions? Problems with the heart are the most common underlying cause of periodic breathing. Issues with your kidneys appear to be the second most common cause of periodic breathing.

No, I've never been referred to a cardiologist. I think my Cheyne-Stokes issues result from living at a high altitude and my history of smoking. I've been on supplemental O2 since the end of last summer, but I'm not sure it's making any appreciable difference. I've done overnight oximetry both with and without the added O2, and I don't see much difference in the results. But since I have the concentrator, I continue to use it.

I'm in the process of switching PCPs because my current doc told me that I "don't need a pap smear every year anymore" since I'm in menopause. I questioned him three times when he said that, because it made absolutely no sense, but he insisted that every two years was sufficient. I have a history of dysplasia and I still have a cervix, so I went around him to another clinic for my yearly pap.

Thankfully, there's no family history of heart or kidney problems, but when I'm set up with the new PCP, I'll mention having both checked out. I also hope to get off my BP medication, now that I'm getting such good therapy.

As is always the case, while I am happy to see folks getting good therapy, it is important to keep your medical team in the loop. Well, at least the part of the team that demonstrated they are listening!

I can't disagree, but I don't feel like I have anyone on my "medical team" at the moment, listening or not. My PCP is questionable, at best. My sleep doc was supposed to follow up with me in January to see how I'm doing. The DME was supposed to come to the house in January to test the concentrator to be sure it's working properly. Think I've heard a peep from either of them?

Please don't panic. I'm definitely not a medical professional. Nor am I being an alarmist. I am just letting you know what I would do. And I do not want you to miss the chance to address something that can be caught and handled early.

Hope that helps.

Nope, no alarms going off, and I will follow up with the new PCP. Thanks, John.

[JohnBFisher]

... I think my Cheyne-Stokes issues result from living at a high altitude and my history of smoking. ...

Oh, it definitely sounds as if you've had more fun than anyone deserves.

You are probably correct about the cause of the periodic breathing. Both high altitiude and long term smoking can cause problems with the mechanism that allows your body to monitor and compensate for CO2 buildup in your body.

When you find your new PCP, and get a referral to a new sleep specialist, who can help address your sleep issues, I will be happy to help you be prepared with lists of papers that support use of an ASV unit to address periodic breathing. It's a real shame when you get a doctor that so clearly "does not get it". I'm all in favor of saving a buck, but not recklessly.

[DoriC]

BB, thanks so much for the update. All I want to say is I'm happy for you! What I understand of your data,it looks great and much different from the "old days". You deserve the restful sleep you're getting now just for not giving up (like a dog with a bone) and for seeing this through to a successful conclusion. Your story is an education for all of us.

[BleepingBeauty]

... I think my Cheyne-Stokes issues result from living at a high altitude and my history of smoking. ...

Oh, it definitely sounds as if you've had more fun than anyone deserves.

You are probably correct about the cause of the periodic breathing. Both high altitiude and long term smoking can cause problems with the mechanism that allows your body to monitor and compensate for CO2 buildup in your body.

When you find your new PCP, and get a referral to a new sleep specialist, who can help address your sleep issues, I will be happy to help you be prepared with lists of papers that support use of an ASV unit to address periodic breathing. It's a real shame when you get a doctor that so clearly "does not get it". I'm all in favor of saving a buck, but not recklessly.

Thanks again, John. If/when I seek a new doc, I'll remember your offer of help.

Truthfully, I'm in no rush to find a new sleep doctor, at this point. There's only one other who's available to me under my insurance, and I'd be inclined to solicit his help only if I have a problem with my current therapy that I can't solve with the help of the forum. I feel like I'm finally doing well with this machine and, since the two docs I've had so far haven't done anything to help me me get to this point (and, in fact, actually thwarted my efforts in that regard), I'm gun-shy about trusting another one. However, that said, I'd be happy to find a really good sleep doc.

So maybe I'll give the guy a chance. I can get a referral to him easily enough. If he doesn't impress me or I get the impression that he's not interested in working with me, I'll be no worse off than I am right now. I may have a sleep doc at the moment (on paper, anyway), but I sure feel like I'm on my own.

BB, thanks so much for the update. All I want to say is I'm happy for you! What I understand of your data,it looks great and much different from the "old days". You deserve the restful sleep you're getting now just for not giving up (like a dog with a bone) and for seeing this through to a successful conclusion. Your story is an education for all of us.

Thanks, Dori.

I don't understand all the reported data from the ASV, either, but what I know for sure is that I'm sleeping really well and feeling very good during the day. (And this is happening while I'm sleeping solely on my back! I imagine I'll do even better after I have the other shoulder surgically repaired and can sleep on my side again.) I'm definitely seeing improvement in my ability to think and concentrate, and my memory has improved pretty dramatically. My therapy is working, and I couldn't be happier to have finally reached this point!

I have this forum to thank for educating me (and -SWS, in particular, for encouraging me when I didn't think I'd ever find an ASV I could buy on my own). Perseverance is key with this therapy, and it was even more important in a situation like mine.

Many thanks to everyone on the forum for helping me get here.

P.S. How's Mike doing with his recovery from surgery? I hope he's sleeping more comfortably now (and that you are, too).

[Kiralynx]

BB,

Considering all that you have been through to get effective therapy, seeing those charts is wonderful.

ASV may not be the answer for everyone, but it certainly seems to be the answer to your issues.

I'm sure glad this Forum was here, and that you're STUBBORN.

[cpapernewbie]

Hi BB and all participating heroes!

This is the CPAP "War and Peace". I wish somebody rewrite these episodes into a TV sitcom Very interesting eventhough it is a very very long thread!

I just want to know what happened to the "bad" guy and the report to medical board...
Way to go BB!