Newish user : no benefits

I've had a resmed11 with nasal pillows since October (4 months). I've been good about using the machine and getting high scores when I use it.

I went for a sleep study because I was told that I snore heavily with gasping. The study said I have moderate to severe apnea with 30+ incidents per hour and O2 dropping into the 80s... apparently not good.

They sent me a resmed11 and the doctor programmed it remotely once I set it up, so I don't know what the settings are. They told me I would have so much energy after starting treatment.

My problem is I don't feel any different when I use the machine. I wasn't really tired during the day before. I also checked my O2 and there isn't really a difference between CPAP and non-CPAP nights (high 80s to high 90s overnight).

I went to the Dr. after a month for the follow-up and to voice my concerns and I got the standard "You're just getting used to it; give it some time." response. I'm OK with that, but O2 is a pretty easy thing to measure and if it's not different then the treatment isn't doing anything.

So, how would you experts handle a situation like this? Should I just keep going with treatment as is, or do I start a side project to make a fake breathing machine out of a raspberry pi and solenoid to trick the resmed. Then I just tell the Dr everything's great.

scienceguy wrote: ↑

Thu Jan 26, 2023 1:52 pm

So, how would you experts handle a situation like this?

I did handle a situation like this - my situation starting out. Learn to use OSCAR to optimize your own therapy and cut the doctor out.

scienceguy wrote: ↑

Thu Jan 26, 2023 1:52 pm

so I don't know what the settings are

You can't optimize your therapy if you know no more than that. Find your CPAP model on youtube and learn how to control your own machine. I would even put the machine in airplane mode so that the doctor can't fiddle with my settings. You will need to turn airplane mode off when your compliance data needs uploading for insurance verification.

Please fill out your equipment profile.

Please stick to this one thread as you progress. Ask questions. Plenty of people want to help you.

scienceguy wrote: ↑

Thu Jan 26, 2023 1:52 pm

So, how would you experts handle a situation like this? Should I just keep going with treatment as is, or do I start a side project to make a fake breathing machine out of a raspberry pi and solenoid to trick the resmed. Then I just tell the Dr everything's great.

welcome to the zoo! nice to have bill nye stop by for help.

i see granny has given you good advice. let me flesh it out a bit regarding oscar. that's a software program. doesn't run on a phone or tablet, alas. needs an actually computer. also, that computer must have an sd slot or a usb to sd card reader. which, of course, means you need an sd card.

here is a link to some information you will need-viewtopic/t172378/Sticky--Newbies-PLEAS ... STING.html

the most likely reason you aren't getting proper treatment is that your machine isn't setup correctly.

but start in with oscar. it will give us some much needed data in order to get your journey going properly.

good luck!

Just to chime on on the excellent advice you've gotten so far: a really depressing number of people have to cope with sleep doctors who are inattentive and unhelpful. Oscar provides us with the knowledge we need to adjust our settings on our own in a thoughtful and constructive way. No one can promise you miracles, but if you're a "scienceguy," I think you'll really like Oscar and its analytic capabilities. There are lots of experienced people here who can help you adjust your settings once you can post a daily Oscar chart or two.

To me, there are probably two benefits of successful cpap therapy. One, is to start feeling better, stop napping at stoplights, grumpiness, feeling tired, etc.... The other is your overall health improvement. Your AHI is high and needs to be corrected, but there are a lot of folks here whose AHI is much higher. Lowering your AHI will improve your overall health and quality of life. Your AHI of 30 means that you have an apnea event 30 times per hour, all night long. Over the months and years, your body cannot sustain that and your body will start to break down on you and probably cause an early death. I have stated before, that I believe cpap therapy has added maybe 10-15 years to my life. I am also convinced that those 10-15 years are healthy years.

In your situation, I recommend that you continue therapy. For some people, the day to day improvements are gradual, and can often go unnoticed.

Sheriff

scienceguy wrote: ↑

Thu Jan 26, 2023 1:52 pm

I've had a resmed11 with nasal pillows since October (4 months). I've been good about using the machine and getting high scores when I use it.

Even though 4 months seems like an eternity when you're feeling bad or worse than you you did before starting CPAP therapy, my guess is that your body is still working on adjusting to all the stuff that CPAP therapy involves in terms of sleeping well with the machine.

My own adjustment was an outlier in terms of how bad it was: I crashed and burned immediately in terms of daytime functioning and it took a good 5-6 months of hard work to get back to where I was when I started therapy. And another 2-4 months before I really started to feel better.

Keeping a sleep log (for fighting an insomnia monster) was what allowed me to identify the first hint that CPAP was doing me some good: About 6 or 7 months into therapy the phrase, "Woke up with no hand & foot pain" started to appear on a frequent basis in the sleep log. I'd been waking up with hand & foot pain every morning for years---it felt like I had been sleeping with my hands and feet in fists all night long, every single night. Apparently the stress hormones released during my night time hypopneas and apneas was causing my hands and feet to literally become fists during the night.

If I hadn't been keeping the sleep log, I'm not sure I would have even noticed when that hand & foot pain disappeared.

The next improvement? I became less restless when in bed. Pre-CPAP I would pull the covers around every night tossing and turning in ways that I never remembered, but my husband did. Now? I sleep soundly enough where the covers aren't a mess every morning and my husband no longer wakes up to me having stolen all of the covers.

I'm still a bit of a bear when I get out of bed in the morning, but at least now I don't feel like I'm dragging myself out of bed. I wake up feeling rested, and often even refreshed. And pain free. On the rare occasions when I've been forced to sleep without my machine for a night, I get a rude reminder of what my old normal was: Morning headaches, hand & foot pain, and a real restlessness at night that makes me appreciate the fact that my middle of the night wakes are now usually confined to end-of-sleep cycle wakes and are usually so brief that I really don't remember them in the morning.

In other words, I'm glad I stuck with it long enough for me to start seeing some real benefits.

They sent me a resmed11 and the doctor programmed it remotely once I set it up, so I don't know what the settings are. They told me I would have so much energy after starting treatment.

You need to learn what your settings are.

You can get the clinical manual to your Resmed 11 here: https://www.manualslib.com/manual/22131 ... se-11.html

There are also youtube videos for learning how to get into the Clinical menu on your machine to learn what the settings are.

Not knowing the settings on your CPAP is like not knowing the dose of a prescription drug that you take on a regular basis.

My problem is I don't feel any different when I use the machine. I wasn't really tired during the day before. I also checked my O2 and there isn't really a difference between CPAP and non-CPAP nights (high 80s to high 90s overnight).

Several comments:

1) Folks who are not highly symptomatic before their diagnosis often do have a harder transition to CPAP than folks who felt like they were going to fall asleep at the wheel while driving. The more symptoms of untreated OSA a person seems to have, the more quickly they seem to respond positively to CPAP in terms of how they feel.

2) Folks with moderate-to-severe untreated OSA will benefit from therapy from a health standpoint, even if they're not feeling substantially better. So there's a reason to keep on slugging through your transition period. Eventually you will reap some significant benefits.

3) Post some data. Ideally you should post a typical night's data as shown in Oscar or upload the SD card's contents to SleepHQ and post a link to it here. And also post the O2 data and tell us exactly how you are measuring the overnight O2 data. Finally, if you are comfortable posting a redacted version of your sleep study results, that can be very useful for trouble shooting why you are still having so many difficulties.

I went to the Dr. after a month for the follow-up and to voice my concerns and I got the standard "You're just getting used to it; give it some time." response. I'm OK with that, but O2 is a pretty easy thing to measure and if it's not different then the treatment isn't doing anything.

Sorry you've got a doc who is not much help. (I went through 3 sleep docs before finding a jewel in Sleep Doc #4, who happened to use a CPAP himself. Alas, Sleep Doc #4 retired, but Sleep Doc #5 seems promising at this point.)

And post the data.

So, how would you experts handle a situation like this? Should I just keep going with treatment as is, or do I start a side project to make a fake breathing machine out of a raspberry pi and solenoid to trick the resmed. Then I just tell the Dr everything's great.

Neither.

Meaning: You don't just keep going with treatment as is. And you don't start the side project to fool the machine.

What you do is this: Learn the clinical settings of your machine and what they're supposed to do. Get Oscar installed on your computer or sign up for a free account over at SleepHQ and start looking at the detailed data every night. The data may not make much sense to you at first, so post screen shots here and we'll help step you through what is going on.

Your daily data may show something that needs to be adjusted and point to what adjustments need to be made: The leak data and the AHI data are the first critical data to look at. But in addition to those, the flow limitation graph and the snoring graph often point to issues with whether the pressure needs to be increased. The MyAir "score" is not enough to insure that your CPAP therapy is working as well as it should.

Also consider your overall comfort: Fixing comfort problems is critical for being able to sleep well with the machine.

And finally consider whether there might be other factors still affecting your sleep. In particular, make sure you read up on sleep hygiene and start implementing those guidelines if you happen to have mediocre to bad sleep hygiene.