I think I got screwed

During a work up by neurologist for unexplained fatigue (among other symptoms), I was sent for a sleep study. I spent the first night in the sleep lab and was diagnosed with "mild apnea". Overall, my sleep the first night seemed completely normal. I fell asleep within 15 minutes, woke to use the restroom once which is typical, and had no other "glitches" that I was aware of with testing. Stats as follows:
AHI: 7.3
N-REM: 1.8
REM: 31.5
Resp arousal index: 1.3
Snore index: 0.5
Spontaneous arousal index: 4.4
Total arousal index: 6.2

Baseline O2: 98%
Minimum O2: 87%

Stage 1: 8.8%
Stage 2: 66.2%
Stage 3&4: 6.4%
REM: 18.6%

REM latency: delayed at 182 minutes

Normal sinus rhythm with abnormal amount of PVC's noted.

I was told to return for CPAP titration study. The second test didn't go nearly as smoothly as the first. From the time listed as "lights out", the person monitoring things returned 5 times over the next 2 hours to adjust the EKG leads, replace EKG wires, replace EKG wires, replace pulse oximeter, etc. He finally said he was leaving it "like it is" after the fifth attempt at "fixing things". The end results are useless IMO.

The EKG bounces all over the place all night long. One minute my heart rate is less than 40, the next it is 220, there is no sinus rhythm pattern to it at all, just lines going all over the place all night long. Clearly the EKG part wasn't functioning correctly, or I had some SERIOUS heart issues going on. I'm assuming it's that the EKG wasn't working.

They started me at a pressure of 4, and by the time I woke up, he said I was at 14. Machine set to "ramp down" by 3 with exhalation, which is the max setting. More on that later.

Stats from second sleep study with CPAP:

AHI: 0
N-REM: 0
REM: 0
Resp arousal index: 0
Snore index: 0
Spontaneous arousal index: 5
Total arousal index: 5

Baseline O2: 98%
Minimum O2: 88%

Stage 1: 18.3%
Stage 2: 62.7%
Stage 3&4: 19%
REM: 0%

REM latency: no REM sleep detected

I was sent on my merry way with a ResMed AirSense 10 CPAP. I specifically asked if it had some sort of data capability and was given a card to sign up online for some sort of service to monitor events. A few days later, I called back and was told this machine doesn't have that capability. If I felt like I had good results to work with from the CPAP study, it wouldn't bother me *as much* that this machine tells me basically nothing useful as far as if it's actually working correctly. I've been using it for about 3 wks, and other than having to miss half a day of work twice last wk bc the stomach cramps and 3-4 HOURS of non-stop burping and farting, I can't tell it's doing anything.

I've got the built in humidifier. Full face mask. It's not exactly comfortable, but it's not as terrible as I expected. I wear it religiously.

At my neuro follow up, she was NOT impressed with the "poor quality" results from the second study and referred me to a sleep specialist physician. Among her concerns were:

1. Virtually all of my events occurred during REM sleep. With zero REM sleep during CPAP study, how do they have a clue it's set correctly?

2. My overall sleep time was 2+ hours less than the first study bc of all of the issues with EKG and pulse ox in the beginning. The EKG data is completely useless.

3. My spontaneous arousal index was actually worse with CPAP. Perhaps getting used to the machine? Who knows. And I have no way of tracking anything with this useless machine.

4. My O2 sats were still basically the same from one study to the next. And that's without any REM sleep which is where the de-sats occurred originally.

My questions. I was given this machine and all the assorted parts at the sleep center. I was told they will contact me in X months to replace tubing and such. My insurance paid for the sleep studies and all DME at 100%. I was told I had 30 days to "return it".

My appt with the sleep specialist isn't until well past the 30 days will be up (end of May). Would I be better off taking the whole thing back to the sleep center and getting proof I returned it so my insurance can be credited? Wait until I see the sleep doctor in person (who is not affiliated with this sleep center at all). Discuss options for machines then? I'm already assuming the CPAP study has to be re-done.

Thoughts? Suggestions?

Hopefully others more qualified than myself will have some constructive comments on your sleep study but it sounds like an ordeal and I feel for you.

AirSense 10 CPAP is their basic model of that lineup and claims to provide therapy data but it could just be compliance data. I would push for an AirSense 10 Autoset or (someone correct me if I am wrong) I *think* the AirSense 10 Elite has full data capabilities but I would try to get an Autoset regardless. If you can get the Autoset you are good to go with the most options available to monitor your status and take control of your therapy.

EDIT to add: Going without therapy is not an enticing prospect either. If it were me and I had the means, I might shop craigslist for a data capable machine to get by in the meantime. In most markets you can find Philips Respironics System One Auto for $100-200 and even sometimes a Resmed S9 Autoset in the 200-300 range. These machines are also available for a little more online with warranty gently used or new in box. You would then have a spare to take on the road with you or whatever. If it is a System One it has a clunky interface but has some advantages for camping if that is something you do.

Definitely return that machine, it is a brick, with only the most basic data (AHI, and compliance data I think).

Then either go get a second titration study with a different technician/lab, or get an APAP, like the Airsense 10 Autoset and titrate yourself. I don't know which way your insurance will pay, but that is the way I would go.

If they won't exchange it have your doctor write a new prescription that specifies an autoset.

The AirSense 10 CPAP has AHI and hours of use available that you can see on the machine's LCD screen but you have to turn it on to see it or use ResScan software (Sleepyhead may work with though).
Check out the manual here to see how to turn it on so you can see the limited data it collects. Page 17...I think Essentials has to be changed from "On" to "Plus"
https://sleep.tnet.com/home/files/resme ... -guide.pdf

I would still insist on a full data machine though....and with the REM OSA being so much worse...APAP capable machine would be on the top of my list.

nightowl1975 wrote: 1. Virtually all of my events occurred during REM sleep. With zero REM sleep during CPAP study, how do they have a clue it's set correctly?

You may or may not need a different pressure during REM. It's quite common for our OSA to be worse in REM stage sleep (mine is 5 times worse in REM than in non REM) and it's also quite common to need more pressure during REM than at other times during the night.
This also would be a good reason to have an apap machine because you might need a lot more pressure in REM but not need as much in on REM. Back when I was using apap I could use 10 to 12 during the non REM sleep but sometimes needed 18 in REM sleep.
My titration study missed the RX pressure mark too...I only got 6 minutes of REM sleep during the titration study from hell.

You might want to read this especially the part down the page "help I have been given a brick"
https://maskarrayed.wordpress.com/
and while technically not a true brick since it will give you AHI only...there's nothing else to help you evaluate your therapy...like leaks, etc