ASV patient with question for Sludge or anyone who can help

[jwerley]

Everything seems perfect with a 00 AHI, but it isn't. I am exhausted when I wake up. I would love to hear from Sludge on this to see if he can tell me what is going on? Somehow airway does not open enough, but pressure does not not kick in to open it. This pattern repeats itself all night long.

[JDS74]

There are other medical conditions that can interfere with restful sleep. Time to discuss this with you PCP or sleep doctor to see if they can/will order additional studies including another sleep study, overnight Holter monitor studies, endocrinology studies, etc. that may cast some light on possible causes.

[palerider]

the first thing I notice is that your epap is quite low.

[jwerley]

Thank you for your comments....will follow up with doc. Janice

[archangle]

What does your minute vent and tidal volume look like when you're having these events?

[justinjustin]

Everything seems perfect with a 00 AHI, but it isn't. I am exhausted when I wake up. I would love to hear from Sludge on this to see if he can tell me what is going on? Somehow airway does not open enough, but pressure does not not kick in to open it. This pattern repeats itself all night long.

Definitely looks like serious flow limitations that indicate UARS, which can cause fatigue and excessive sleepiness despite great AHI.

[Sludge]

Based on that brief sample, there are no events. Although flow limitation is significant ("IMHO" >0.4 in ResMed is significant) there is no terminating event, flow does not change, therefore ASV has nothing to attack. If you did exactly that all night long, in addition to the 0.0 AHI you would have 0.0 RERA (because there wouldn't be any "A"s).

Also, keep in mind that bilevel machine "engineer" waveforms. Any time IPAP > EPAP, waveform shape is (largely) determined by the machine, and if it's base waveform design is square, then you may expect to see a lot of FL.

Conversely, if you use something like a BiFlex technology, you might be able to generate a better looking waveform.

If you want, upload the data to Dropbox in order to look at the entire night(s) to see if there are clues to what's happening to your exhaustion.

[Sludge]

Everything seems perfect with a 00 AHI, but it isn't. I am exhausted when I wake up.

BTW is this new? Back on February 7 you said

I want to add myself to the list of happy ASV users. It has changed my life and I could not be without it. 95% of my AHI' are 00's and the rest are always below 1. I feel great!

Janice

P.S. I need to update my avatar! That is how I used to feel on CPAP!

[jwerley]

Sludge I hope this is what you want to look at if not, please tell me how to post what you want. Yes this extreme tiredness is pretty new. I also have always had a very low respiration....it can go as low as 38, 39 at night while sleeping. I was recently in the hospital, nurses were concerned about it. Also run a low blood pressure.

[Pugsy]

When Sludge says "upload the data to dropbox or some place similar" he is talking about the actual data from the SD card itself so he can plug the data into his software so that he can see what is going on in more than just little snippets from your screen shots.

Dropbox is a place where you can upload large files and someone can go get them easily. There are other similar places but dropbox is pretty simple.

What you do is just make a copy of your SD card contents and compress/zip them down to a folder and then put that folder in your dropbox online storage. Then post the public link to that folder so that Sludge can go get the folder and he then will unzip it and be able to see all your data by using the software.
He needs all the data files though and not just bits and pieces. I find it easier to just make a copy of the entire SD card and then compress it. It needs to be compressed or there is no public link available to the folder and requires more work to get the needed data files.

So you just make a copy of the SD card contents and then compress it and then move it to dropbox so Sludge can go pick up that copy and do his thing. Less steps involved for both you and him when it is done that way. Otherwise you have to do the files individually.

[jwerley]

I have to learn how to do the drop box thing before I can post anything.......thanks for the responses!
Janice

[palerider]

I have to learn how to do the drop box thing before I can post anything.......thanks for the responses!
Janice

your upload worked, and I took a look at it and will offer an obseravtion, until sludge gets time to offer some actual educated information.

you've got your asv in straight asv mode, where the epap *can't* vary in response to your breathing.

I've got a friend who's got the 36037 and when he starts getting FL's like you, and the raggedy flows, his adapt bumps the epap till things settle down.

if it were my friend showing the same thing, and feeling more tired, I'd bump his epap a little, and put him in asvauto mode (which is where he is now, (min epap 8, min ps4, autoasv)

[jwerley]

Palerider: Thanks for the input. When I was titrated the doc said keep Epap at 6...do not move it!
Also wanted me on straight ASV, no auto....however they had my pressure so high that it was causing all kinds of events. They had my high PS at 15, I had to lower it to 11. I really wonder what the heck my settings should be? I certainly do not have confidence in the doc and their titrations.

So, as you have suggested I was going to try the auto....I just don't have much confidence in where I should start. The reason I pulled my drop box graphs down is after I posted..... my computer went crazy with ads popping up and warnings of malware, etc, etc. I have a new laptop with Windows 8.1, which I hate!!!!! I am not that computer savvy to begin with and this new Windows is driving me crazy! I moved my Min Epap to 7 last night and felt a little better this morning....so will try the auto and see where the machine wants to take me.

Thanks again,
Janice

[palerider]

Palerider: Thanks for the input. When I was titrated the doc said keep Epap at 6...do not move it!
Also wanted me on straight ASV, no auto....however they had my pressure so high that it was causing all kinds of events. They had my high PS at 15, I had to lower it to 11. I really wonder what the heck my settings should be? I certainly do not have confidence in the doc and their titrations.

So, as you have suggested I was going to try the auto....I just don't have much confidence in where I should start. The reason I pulled my drop box graphs down is after I posted..... my computer went crazy with ads popping up and warnings of malware, etc, etc. I have a new laptop with Windows 8.1, which I hate!!!!! I am not that computer savvy to begin with and this new Windows is driving me crazy! I moved my Min Epap to 7 last night and felt a little better this morning....so will try the auto and see where the machine wants to take me.

I've never heard, or seen that kind of behavior associated with dropbox, they're a pretty reputable service, it was likely something else.

I can relate to win8.1, I've seen it, but fortunately am not forced to use it.

i'm certainly not going to say your doctor is WRONG... but lots and lots of people have found that the one night titrations aren't that accurate for the changing conditions of the human body. you could go minepap 7 and max 9, so it won't go nutso on you, and see what it does... should you decide to do that.

and if sludge didn't get a copy of your files,he can PM me and I can get it to him.

[Pugsy]

I have been using dropbox for 2 or 3 years now...never got one bad thing from that website and I haven't given anyone anything bad either...I am sure I would have heard about it if I had.