Years later and still in the dark

Hello There,

I am a 35 year old male and have been using a ResMed S9 for quite a few years now. I had my sleep study done in the mid to late 2000's (somewhere around 2007 I think). There were two separate studies where I stayed overnight at the sleep lab; I was told at the time that my health insurance covered the studies. A couple of months later I was billed over $2,000 for the studies which came as a complete surprise to me. I tried to fight it but inevitably had to cough up the cash (which at that time in my life was not such an easy thing to do). So I was diagnosed with moderate sleep apnea and then I went on to get my machine and start treatment. I can't remember exactly, but I'm pretty sure my prescribed air pressure was 11.0.

I went to the healthcare center I was set up with to pick up my machine. I forget the name of the company then but they have since been bought by Apria Healthcare and that is who I still deal with. A technician met with me, showed me how to secure my mask to my face, how to turn the machine off and on, and sent me on my way. That was it. That was literally it. I have never had any follow up whatsoever, nobody has ever checked my data that apparently lives on the SD card inside the machine, called me, emailed me, met with me; nothing at all. After a few months I was feeling like I wasn't getting much benefit from the machine, so I called the doctor at the sleep lab, explained how I was feeling and asked if I could get an increase in pressure. He said no, that in order to change the pressure I would have to come in for another overnight study. I told him about my insurance issues from last time and how much that hurt me financially and he said there was nothing that could be done.

So I went on for a couple of years just using it. At some point in time I found out on some forum (possibly this one) that I could hold a couple of buttons down simultaneously and access a "hidden" menu where some adjustments could be made. That was a small step in the right direction I suppose as I now had some degree of control over how the machine was working. I'm still completely in the dark however. I don't know if things are working as effectively as they could/should. I don't know how to read my data and interpret the results. Last year I drove to an Apria Healthcare facility, walked in, and told them that I'd been with them for years and nobody had ever checked in with me to look at my data and machine and see how I was doing. The woman looked at me like I was completely psychotic and basically said, "We did everything we were supposed to do." I was pretty disappointed and, once again, just kind of went back to the same old routine.

So here I am after using this machine for quite a few years, Every single morning I sleep through three alarms, I wake up feeling groggy, dizzy and disoriented; spending the first few hours of every day feeling like my head is full of smog. I'm constantly late for work (I was about an hour late this morning). I'm usually extremely unproductive for the first half of the day until I kind of snap out of my fog. Sometimes though I just stay groggy all day and all I can think about is getting back home and crawling into bed. Occasionally I peruse through these forums and I get extremely jealous of everyone talking about all of the support and assistance they're getting from their healthcare provider who is coaching and guiding them through feeling better. I've seen people here that have software where they can look at their sleep data on a computer and analyze the results. Likewise with some guys I've worked with over the years that also have sleep apnea; a guy I work with currently has his data checked regularly by a technician to make sure everything is working correctly.

I have played around with some settings on my S9. Currently I have it set to "Auto" with a range of 12 - 20 and EPR set to Full Time and Level 2. As far as Auto goes, why would there be a reason to not have it set at a pretty broad range? As in setting the range from something like 8 all the way up to 20 and just have the machine figure out what you need and adjust accordingly. I've seen people here that have Auto on and the range is small (like 13 - 16 for example). So I'm confused about that. I also take Vyvanse and Lexapro for some ADHD and anxiety issues and I don't know how those conditions and/or medications tie into all of this.

Hopefully you've read this far - I tried to keep this as concise as possible but I knew I had a lot of frustrations and confusion to get off my chest so thank you for your patience. Ultimately I suppose I am just looking for feedback to see if this whole journey is as unsettling as I think it is or if this is considered pretty normal. And of course some advice and guidance on how to proceed. Am I able to just switch to a different healthcare company with better service? Anything else I could do?

Thanks!
Randy

Sounds like you have the ResMed S9 AutoSet.
Get the software that is available and let's figure out if your settings are even working.
Start here
https://sleep.tnet.com/equipment

and then share with us what you are seeing and these links below explain how

viewtopic/t103468/Need-help-with-screen-shots.html

https://sleep.tnet.com/reference/tips/imgur

RandMan wrote:why would there be a reason to not have it set at a pretty broad range?

Because if set too low the machine can't respond fast enough to prevent the airway from collapsing.
A low starting minimum works great if you don't need to go very high but doesn't work so great if you need a lot higher.

Thanks Pugsy! Does it matter what program I download?

I would suggest starting with SleepyHead. It's a big more user friendly to use than ResScan and works well with the S9 machines.

OK - I downloaded SleepyHead. I locked the "write access" on my SD card before I inserted it in my computer. Do I have to unlock it before putting it back into the cpap machine?

RandMan wrote:OK - I downloaded SleepyHead. I locked the "write access" on my SD card before I inserted it in my computer. Do I have to unlock it before putting it back into the cpap machine?

How is it going to write to the card if it's locked?
You also just said you locked it before you inserted it in your computer........wouldn't you put it back in the same position as when you took it out?


Den

.

Wulfman... wrote:
How is it going to write to the card if it's locked?
You also just said you locked it before you inserted it in your computer........wouldn't you put it back in the same position as when you took it out?

Den

.

Wow - I haven't been spoken to like that since I was 11 years old! So what I got from that is yes - I do need to unlock it before putting it back in the machine.

Yes, you need to unlock the SD card before putting it back in the S9 but if you forget the machine will remind you if you look at the LCD screen when you insert the card back into the S9.
Been there, done that and have seen the message.

RandMan wrote:

Wulfman... wrote:
How is it going to write to the card if it's locked?
You also just said you locked it before you inserted it in your computer........wouldn't you put it back in the same position as when you took it out?

Den

.

Wow - I haven't been spoken to like that since I was 11 years old! So what I got from that is yes - I do need to unlock it before putting it back in the machine.

I have a question...If I untie my shoes when I take them off...do I need to re tie them when I put them on?

C'mon people ...

We've all been there. Shitty or no therapy and the brain fog that comes with it. Feeling bewildered and wondering if we are ever going to feel better again.

No need to be a dick to this guy.

OP, good luck to you, and welcome to the forum. There are lots of kind, knowledgeable people here who can help you take control of your therapy.

Whether you need to lock and unlock the memory card depends on which version of windows you are running. Some will write a couple of small files on the card that the cpap machine doesn't like, so it reformats the card and erases the old data. This does not happen on windows 7 - so no locking required. I believe that it's windows 8 that is the problem. I do not know about windows 10. So, what version of windows is the computer running sleepyhead using?

It's a shame that you've been struggling so long. Often, it's only a relatively minor change that's needed and the data points the way. You've got some helpful, knowledgeable people here willing to help. Just ignore posts that aren't helpful - we all have our bad days.

My story is much the same, study in 2003, RemSTAR Plus Heated Humidifier. Ignorance is bliss. I can still remember waking after my first night on CPAP at home. . .Best nights sleep I'd ever had. Years later: First night w/S9 "Brick" a very similar, but much quieter experience. Now using ResMed AirSense 10 Autoset. . .If I knew more sooner, it certainly would have been a cheaper journey. Many youngins I talk with are surprised I can use a computer at all. Just starting my Data Capable Machine journey, and am thankful to those who know more and are willing to help those that don't.
Cheers,
otrpu

yaconsult wrote: I believe that it's windows 8 that is the problem. I do not know about windows 10.

FYI for everyone...Windows 10 is a problem too...so not just Windows 8.xxx.
And some Mac OS.

If someone is using Windows 7 or older...not a problem and there is no urgent need to lock the SD card but it probably is a good practice to get into doing...even though I don't practice what I preach.

I have been using CPAP for a mere 7 nights now, but I have dumped my card a few times already for use with SleepyHead. Fascinating stuff.

My question...on the last import, I forgot to slide the write-protect switch on the card. I did my import like the previous times on my Windows 8.1 computer. When I removed the card from the reader and noticed I forgot the switch, I was nervous the machine was going to be mad when I put it back in, but it just gave me the same brief "preparing card" message or whatever it says like it had the other times.

I guess I'm okay? The computer didn't write anything that made it want to format the card? Or has it been doing a whole format each time? As long as I'm not disrupting the amount of data that is needed for compliance, etc. But, that should be transmitted on its own via the cellular modem.

HeadlongFlight wrote:I guess I'm okay? The computer didn't write anything that made it want to format the card? Or has it been doing a whole format each time?

You are okay. The message that people get if the machine doesn't like the SD card contents is "invalid card" and gives you a choice to erase..yes or no.

You are using an AirSense machine and it may not be as problematic with the file that Windows adds than the S9 machines are.
Respironics machines don't seem to care at all so Respironcis users don't have to lock the card unless they just want to. It might be the same with the AirSense machines...not enough experience with them and people using Win 8.xxx or higher and not locking the card to know for sure.

Even if you did have to erase your SD card the machine stores the usage and summary AHI data on its internal memory (which is what a DME might need for compliance requirements) and will put that data right back on the SD card after it erases it. So it isn't the end of the world if that should happen. You have what you need in the software and the machine will put back on the SD card what the DME might need.