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Years later and still in the dark - RandMan - 11-30-2015
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
RE: Years later and still in the dark - cate1898 - 11-30-2015
Hi Randy and glad you finally decided to post after being a member since 2013!
Sounds like you are not getting any help with your provider or sleep doc. First of all, I am pretty new to this but I do spend every morning looking at my data. You should download SleepyHead and install it, link is at the top. I find the more I look at it, the more I understand. It is somewhat confusing. However, it will show if you are having mask leaks which is important. It will show your overall AHI (Apnea Hypopnea Index) which most of the sleep docs go by - that's all mine looks at. You can then post screenshots so that those more knowledgeable than me can give you some advice on how to tweak your machine.
About the range of 12-20. Might need to be fine tuned. It takes a machine some time to ramp up to the high range when needed and time to go back down to where you need to be most of the time. That's why it's beneficial to have a tighter range if that is indeed appropriate for you. And once again if you post SH screenshots you can get advice.
By the way, which S9 model do you have? Escape, Elite or Auto?
Good luck and keep us posted!
RE: Years later and still in the dark - OpalRose - 11-30-2015
Welcome to Apnea Board RandMan,
First off, I'm sorry for all you've been through, but it seems to be the norm if your dealing with Apria. You can't believe anything they tell you, especially concerning insurance coverage.
In the future, check with your insurance yourself to see exactly what is covered. You may want to consider upgrading to a newer machine, and if so, check here first. We can advise you.
Which S9 machine do you have. If it says S9 escape, then you won't get any useful data from the machine.
If you have the S9 AutoSet, you may be able to download sleepyhead and give us some data.
With your current setting of 12-20, what are your AHI numbers? There is nothing wrong with your pressure range, but should be set according to your 90% and medium numbers. If you know those figures, let us know.
RE: Years later and still in the dark - Mosquitobait - 11-30-2015
First of all, I sympathize for unexpected, unpaid medical bills. I ended up in bankruptcy the first time around. As others have mentioned, once you can get information from your machine, someone knowledgeable can help you. I'm a newbie (just started Cpap in June) and though I know some stuff, this is an area where I bow to those who have worked with this stuff much longer!
Secondly, the range. Your range could be too low. At this point, you should also contact the sleep doctor's office and ask them for a copy of the study, both the raw data and the summary. It helps this group to rule out certain conundrums that were already existing. I'm currently playing with my range a bit. I gained 8 pounds and my upper range needed to be adjusted up a bit because I was hitting the ceiling for a fair percentage of the evening. High pressures increase leaks, so you don't want to have it set higher than it needs to be. For some people, when it goes high, it wakes them up. If it is only over 12 for say a few minutes a night, no need to have it set over 12.
RE: Years later and still in the dark - trish6hundred - 11-30-2015
Hi RandMan,
WELCOME! to the forum.!
I’m sure sorry to hear that you have been through so much.
Which machine do you have?
There is lots of help here on this forum, so you just hang around for more suggestions and answers to your questions.
I wish you much success in getting all of this straightened out.
RE: Years later and still in the dark - Terry - 11-30-2015
If you download SleepyHead (free software, link at the top of this page), install it on your computer, let it read the data card from your machine, then post screen shots of the graphs for the latest day, there are people here who would be happy to take a look and make some suggestions.
Make sure you erase/crop personally identifying information like your name and machine's serial number.
RE: Years later and still in the dark - RandMan - 11-30-2015
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?
RE: Years later and still in the dark - OpalRose - 11-30-2015
(11-30-2015, 06:12 PM)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?
Yes, unlock it before putting back in Cpap.
RE: Years later and still in the dark - DariaVader - 11-30-2015
Since you have set a range, I assume your S9 is indeed the autoset
once you have imported your data into sleepyhead, look at AHI. Is it > 5? What is the makeup of event types?
Next look at leaks. If they are too high the numbers given will not be reliable.
RE: Years later and still in the dark - RandMan - 11-30-2015
What do people typically post for data? The last week's worth of info? The last month? Just the night before?