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Getting tired *from* using the CPAP?

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diannelamerc +0 points · 8 months ago Original Poster

(I found a thread like this by searching, but it was five years old and didn't help.)

Diagnosed with mild/moderate OSA, started on CPAP, and (once I got the right mask and got the tech to lower the pressure twice so I could breathe out) and--objectively--I've been doing fine. No problems with the mask, getting to sleep, staying asleep, waking up, or pulling at the mask. No leaks, apnea gone, yay.

But any night I sleep with it I end up feeling tired and worn out when I wake up. It's bad enough that I've been giving myself a night off about once a week just to catch back up. (If I sleep without it I wake up feeling fine--actually, more like "great" compared to how I feel after sleeping in it.)

Just had my 2mo follow up this morning and was hoping there was some adjustment to pressure or rate or who knows, something that would help. But my tech says everything's great. My scores (on the ResMed) are near-perfect. She basically said that there's no way for me to be sleeping solidly through the night with it the way I am and have it negatively affect my sleep.

Since I'm not having issues with the mask or waking up in the night or anything, she was left saying "fatigue can be caused by many things...". When I pointed out that the CPAP is the only thing I've changed and asked how my diet or the meds I've been on for three years now could be suddenly making such a difference night to night depending on whether I wear it, she had nothing. She left it at "try it for another three months and see how it goes".

I can't go three months more running this low on energy/sleep, especially when she admits there's no reason to think anything will change because the setup is "perfect" now. (I guess she's hoping I get used to being suddenly tired all the time?) Does anyone have a suggestion short of just giving up on it entirely? (Right now I'm kicking myself for even following up on my doctor's off-hand suggestion about getting checked for apnea in the first place.)

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Sierra +0 points · 8 months ago Sleep Patron

One of the best ways to make exhale easier is to increase the EPR (expiry pressure relief) to 3 cm. This reduces pressure on exhale only. Higher pressure on inhale is helpful to make breathing easier. On the DreamStation machines I believe this is called Flex. On the ResMed machines it is good to use the Auto for ramp time, and make sure the ramp start pressure is high enough.

It does take some time to get used to sleeping with a CPAP, and can be a bit annoying until you settle into it.

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diannelamerc +0 points · 8 months ago Original Poster

My machine is already ramped and I'm having no problems with air pressure in or out.

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Sierra +0 points · 8 months ago Sleep Patron

Are you using OSCAR to track your results? It can be very helpful in determining what is happening during the sleep.

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diannelamerc +0 points · 8 months ago Original Poster

I hadn't heard of it, but I've downloaded it now and started setting it up. Not sure if there's an SD card in my ResMed machine or where it is. I'll have to check the documentation and then get an SD card reader for my computer.

The tech running the CPAPs at the practice I'm in went over everything closely and pointed out that everything reads as it should--and sent me home with a data summary. Not sure what I could find that she couldn't, but I'm game to try to look at it.

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Sierra +0 points · 8 months ago Sleep Patron

On the A10 ResMed the SD card is on the left hand side behind a flexible door you pry up. They typically come with a 4 GB SD card from the factory, but for some reason (possibly not honorable) some dealers remove the card. The card is the only place all the detailed data is stored. If it came with one, all the data should be still there for you to download with OSCAR. If not, you can put in a SD card from 4 GB up to 32 GB. No real advantage in more than 4 GB, so you may have one laying around from a camera or some other device where it is no longer needed.

The data that gets sent over the air by the machine is very limited summary data, and is mainly used for compliance purposes that some are obligated to provide.

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diannelamerc +0 points · 8 months ago Original Poster

I've got an "AirSense 11" and all the data is sent directly to the office (and my insurance company, of course :eyeroll:) every day ("by Bluetooth"(?)--uh, how?), and I've got basically no control of anything without calling the office and talking them into changing pressure/ramp time/etc., but I'll check when I get home. Thanks!

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Sierra +0 points · 8 months ago Sleep Patron

The AirSense 11 is a bit different but not much. The SD slot is still on the left side but at the top. This video shows how to insert it and where it is. https://www.youtube.com/watch?v=MFMUU7BAaTQ

The over the air stuff is just summary data, and does not have the detailed data that is recorded on the card. It works by connecting to your local cell phone network and probably uses 4G. That is why you have to take the comments based on it from your support vendor with a bit of a grain of salt. They do not see the detailed data. As I said it is more of a compliance monitoring tool. Looking at the data stored on the card is much more informative. They should be able to run software similar to OSCAR to look at the data, but they really can't unless you bring the card in for them to download the data from the card. And of course if there is no card in the machine the data is being lost instead of captured.

You can control your own machine by using the clinical menu. You can find out how by reading this AirSense 11 Clinical Guide. That said you should not change settings without a good understanding of how the settings impact the machine performance. OSCAR can help you a lot in this, but you still need to understand what each setting does.

You can post OSCAR Daily Report screenshots here for comments.

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diannelamerc +0 points · 8 months ago Original Poster

Yup, got home, checked it: and there's no SD card in there. Spotted another YT video on the AS11's SD card and I didn't get the little SD card protector/instruction pamphlet thing they show that would have had it. By the comments it looks like leaving that out of the shipment is a fairly common thing.

So, are you saying the info my doctors are getting is just top-level summary stuff and the machine is dumping all the details? Oh, that's just great...

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diannelamerc +0 points · 8 months ago Original Poster

And I guess I was a little too overwhelmed setting everything up to catch the one place the SD card is mentioned in the user guide. It does say that "for machines where an SD card is bundled with the device" it will be already inserted. It also says it's sending both summary and detailed data to the clinician.

I love the 3-second hold to get to clinician mode though! (My machine never asked me which to use, and the guide has all sorts of comments on "if this feature is enabled for patient access", which nothing much seemed to be.) I'll be careful, but at least now I can find out what pressure it's set to and turn off the d*mn "auto start". I can also fix the time zone which is two off, presumably from wherever the company shipped it.

I appreciate the pointers to having a bit more control of the peripheral stuff myself.

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Sierra +0 points · 8 months ago Sleep Patron

If you read page 33 of that Clinical Guide I gave you a link to above, it "explains it". However, it is a really confusing explanation. I think the only thing that is clear is that if you have no SD card, no detailed data is stored. I would get a card and look at the data yourself with OSCAR. OSCAR is the equivalent of what they call ResScan.

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diannelamerc +0 points · 8 months ago Original Poster

Actually page 32 says "the AirSense 11 device has cellular communication which has the ability to automatically transmit summary and detailed data on a regular basis. It also allows you to change settings remotely", which is what they've been doing. And 33 says both summary/compliance and detailed data are sent via cell, which makes sense, because in the doctor's office she was talking about having access to far more data than I could get through the app.

But yeah, I've got an order in for an SD card and reader so that in the future I'll be able to read that extra data as well.

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Sierra +0 points · 8 months ago Sleep Patron

I see this statement: "The AirSense 11 device stores summary data such as AHI, Total Hours Used and Leak. Detailed data such as snore is stored on the SD card and can be viewed with AirView and ResScan. High resolution flow and pressure data are stored on the SD card."

They make other conflicting statements later, but I read this to mean the machine memory alone does not have enough room to store detailed data, so it is saved on the SD card directly. And no SD card in the machine it will not have it to send it wirelessly.

The info suggests there are three categories of data; summary, detailed, high resolution. If I read it correctly the summary and detailed data may be transferred via the wireless, but not the high resolution.

It is not that clear what it really does, but it does seem to have some improvements over the A10 machines in this data management area.

It will be interesting to hear from you what it really does.

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diannelamerc +0 points · 8 months ago Original Poster

Since they specifically say detailed data is sent wirelessly, I read it as "details won't be stored locally without an SD card". And they don't theoretically need to be, of course, if you as the patient aren't supposed to have access to it. (As seems to be true with my practice.)

The same way that, without knowing the clinical workaround, I couldn't adjust much of anything on my machine without calling and making a phone appointment and talking them into fixing the ramp time or the pressure or whatever. (Not that I'm going to mess around with settings I don't understand, but it's nice to be able to see what they are.)

I couldn't even see what pressure I was set at, they just said they'd make it "lower" for me. As I'm understanding, since they can both monitor and change settings remotely now, they seem in general to be actively be working it making it essentially a "black box" the patient just plugs in as instructed and then ignores.

We'll see, I guess.

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Sierra +0 points · 8 months ago Sleep Patron

What I see in that description is that depending on how the data is looked at (from the SD vs over the air) the frequency of collection can be different. They show the highest resolution as every 2 seconds using the SD and ResScan, while AirView is every minute. However what I see on OSCAR appears to be much more frequent than that. See the example below which is really two apnea events in a row but only the first one was flagged. I believe after 4 seconds or so the machine starts to cycle the fan speed quite frequently to see how the pressure responds. If the pressure cycles then it is classed as an obstructive event. With low or no pressure the pressure cycle is lower. You can easily see that cycle in the graph. The second event did not get to the point where the fan speed started to cycle, and it was not flagged as an event, but flow still dropped significantly. It started where the green cursor is. So it remained as an undetected event. In any case this is what you can see when looking at high resolution data. When you are looking at data collected every minute you will not see this detail.

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Dude2Dude +0 points · 3 months ago

I have a similar issue, but it has only recently surfaced.

I've been using a CPAP since August. Mostly, it's been fine, but lately I'm waking up very tired after using it (Dream Station 2). I also wear a Fitbit, and my Deep sleep percentage, and REM percentage have dropped by about 5% in the last while. Before using the CPAP, I was asymptomatic — I wasn't tired at all during th day -- but if this goes on, I won't be able to work and will have to discontinue CPAP therapy.

Does this happen? Even after a (relatively) successful start?

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Sierra +0 points · 3 months ago Sleep Patron

You may want to try using OSCAR to provide more detail on what is going on during your CPAP use. There may be room for improvements to the setup.

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Dude2Dude +0 points · 3 months ago

Hi Sierra!

Thanks for reaching out. I just downloaded OSCAR, but don't seem to be able to import anythng — to the best of my knowledge, there is no SD card on my DreamStation 2, so not sure how to get data from A to B.

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Sierra +1 point · 3 months ago Sleep Patron

"The following machines have been tested and are supported by OSCAR v1.4.0: DreamStation 2

DreamStation 2 CPAP (410X150C, 410H11C, 410T11C) - see note 3 below DreamStation 2 Advanced CPAP (420X150C, 420H11C, 420T11C) DreamStation 2 Auto CPAP (510H11C, 510T11C) DreamStation 2 Auto CPAP Advanced (520X110C, 520X130C, 520X150C, 520H11C, 520T11C) DreamStation 2 Auto CPAP Advanced with P-Flex (521X120C, 521X140C)"

Here is a video on where it is located if it is a supported model.

https://www.youtube.com/watch?v=VkBkhGYZSHk

It is also possible that the supplier of the CPAP has removed the card. It is a dirty trick, but some do it.

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Dude2Dude +0 points · 3 months ago

Yes, unfortunately that's exactly what they did. There is an SD card slot, but it's empty.

So basically, this means I have to 100% rely on a guy who I had very little faith in anyway. He's able to access my data, but I have to schedule time off, and go to him — this way, he gets paid (by my provincial heqlth care plan — Canada) for an in-person visit for something could be acessed by me. Wow.

It's a DreamStation 2 Auto CPAP, BTW.

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Sierra +0 points · 3 months ago Sleep Patron

If the Dreamstation is like the ResMed you will have lost all the detailed data. ResMed machines only send high level summary data over the air to the cloud. However, you can start collecting data now by inserting a SD card. If it is like a ResMed all you need is a 4 GB or up to 32 GB SDHC. The machine should format it when you insert it. You may have a old SD card around from a camera or GPS.

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Dude2Dude +0 points · 3 months ago

Brilliant! I don't have a spare, but will pick one up ASAP. Thanks, Sierra.

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