Journeyman CPAP user sleep regression

[LSUJonno]

Hey guys,
I was diagnosed with sleep apnea over 3 years ago (85 AHI untreated) and have been using a CPAP ever since (usually around 5 AHI when using my machine). When I first started using it I felt immediate relief, however the past 18 months I've had a lot of regression.
I told my sleep doctor about it a year ago, and we played with pressure settings for 3 months (ended up staying with 5min and 9max which is what it had always been; tried increasing pressures and holy cow I responded very poorly to increasing pressures), and did an at-home sleep study, but given that my AHI score stayed consistently between 2-7, he thought I may have other issues. Long story short, I did have some vitamin D issues and some acid reflux issues, and clearing those up helped (this took about 9 months to completely figure out), but I'm still only at about 80% of what I feel like I should be at in terms of sleep quality.

The reason why I've turned back to looking at my CPAP machine and its settings is because recently I went on a work trip and forgot to pack my mask. These 2 nights on my work trip were the first nights I wasn't on my machine since I got it over 3 years ago. I'm a loud snorer when not on my machine, so loud that I wake myself up from the noise now that I'm not used to hearing myself. I did have some ear plugs with me so I used those to sleep. I still woke up 5-8 times both nights from snoring...but...I actually felt pretty dang good on the two days following my two nights with no cpap...In fact I felt better those two days with no CPAP than I felt with it, both before and after the trip.

This was quite a surprise, so naturally I tried modifying my CPAP settings moving my pressure levels down. Dropping my max pressure level down from 9 to 7 improved things slightly. Dropping my min pressure levels down from 5 to 4 made things much worse in terms of how I felt...I should note that I didn't see any correlation to my AHI score.

I've got another doc appt setup in 2 weeks...but a few questions I have are:
1) Is it normal to have such drastic swings in quality of sleep by tweaking your pressures up or down by 1?
2) How can I feel better (just a 2 night sample size) with no cpap than with a cpap
3) My buddy suggested I might be a "sensitive breather" and might need a bi-level machine like him. He said it was a pain for him to convince his doc to let him try one, but it's made all the difference for him. Any tips on what to tell my doc? This seems like it may be my issue as well.

[ChicagoGranny]

Dropping my max pressure level down from 9 to 7 improved things slightly. Dropping my min pressure levels down from 5 to 4 made things much worse in terms of how I felt...I should note that I didn't see any correlation to my AHI score.

You need to be using OSCAR to guide your "tweaking".

[Julie]

And post it here - we'll help interpret and suggest adjustments if necessary.

[zonker]

Hey guys,

welcome to the zoo!

please see the link at the bottom of chicago grannys' response to you.

each of us is different in our sleep apnea journey. by using software, we can pinpoint exactly what your issues are and offer suggestions for improvement.

good luck!

[Jimmy Lotus]

Hi LSUJonno,

OSCAR really is The Way.

It's open-source freeware that interfaces directly with your machine (via an inexpensive SD memory card and reader) and lets YOU self-diagnose (with the help of many people here in this community with untold experience) your particular issues and then lets YOU adjust your therapy to your own needs.

Frankly, I'd be lost without OSCAR.

[LSUJonno]

Hey guys,
Thanks for the replies. I'm familiar with OSCAR so I've attached some screen shots. I didn't start there with my questions because I feel like there is something else going on. Namely the "flex" settings on my Dreamstation 2 machine. Anyone else struggled with this? I didn't have this problem with my old Dreamstation, felt great when using my machine.

Regardless here are a couple of screenshots from different dates with different CPAP settings.

[ChicagoGranny]

I only looked at the October 22 graph. Your pressure settings are too low. The most events are when the pressure is maxed out at 7.0. Most of us set the max to 20.0. The machine will not take the pressure any higher than needed. If you feel conservative, at least take it to 10.0.

I would also change the minimum pressure. Make it 6.0. It may need to go higher. We can better tell after we see the results of the new settings. If you have the time, post the day after you change the settings. (Stick to this one thread.)

We tweak our settings based on the data. How we feel can be a contributing factor. Data leads the changes. Feelings come later.

I must say that what you describe in your OP sounds like the doctor and you were making changes willy-nilly. Let's improve on that.

[Movieman]

I

I've got another doc appt setup in 2 weeks...but a few questions I have are:
1) Is it normal to have such drastic swings in quality of sleep by tweaking your pressures up or down by 1?

I don't know if it normal to have drastic swings in quality of sleep, but I can tell you that moving my minimum pressure down by 1 and moving my max pressure down by 2 completely changed my cpap therapy for the better. I had AHI of between 10-19 on cpap settings of 8-12 and kept pulling my mask of at night without knowing it. Apparently, pressure too high can make your AHI go up. Once my doctor changed settings to 7-10, no more ripping off mask and AHI is between 0.1 - 2 now. It was a huge difference which I could not believe by lowering pressure by 1.

Folks here are great and can help you with OSCAR data. Hopefully, they can find a setting that works. Good luck! Hope it all works out.

[ChicagoGranny]

Apparently, pressure too high can make your AHI go up.

It might induce central apneas, but not obstructive. You could look back at your data before the settings were lowered to see which type was running your AHI up.

[LSUJonno]

I only looked at the October 22 graph. Your pressure settings are too low. The most events are when the pressure is maxed out at 7.0. Most of us set the max to 20.0. The machine will not take the pressure any higher than needed. If you feel conservative, at least take it to 10.0.

I would also change the minimum pressure. Make it 6.0. It may need to go higher. We can better tell after we see the results of the new settings. If you have the time, post the day after you change the settings. (Stick to this one thread.)

We tweak our settings based on the data. How we feel can be a contributing factor. Data leads the changes. Feelings come later.

I must say that what you describe in your OP sounds like the doctor and you were making changes willy-nilly. Let's improve on that.

A couple more notes:
I started hitting a downward spiral when the Dreamstation 1 was recalled. I slept great with that machine. I bought a RESMED AirSense 10 while waiting for my replacement Dreamstation, and never got used to it. Always felt drowsy the next day. When I first got my Dreamstation 2, it was much better for a while, but eventually I started backsliding again.

My settings were originally 5-10, but lately I've been moving them down in response to the fact that I felt great when not using my machine at all.

I've done some research and learned that some people don't respond well to the FLEX algo's in the Dreamstation 2 so I went ahead and swapped back to my RESMED machine to use that to tweak on with OSCAR and the help from this community. I moved my settings back to 5-10. OSCAR from last night posted below.

One other thing. As I stated before, everytime I make the smallest tweak on pressure settings, it takes me about a week to adjust in terms of how I feel the next day. Even when I see improvements in my numbers, I still feel terrible the next day if it's the first day on a new pressure setting. I've also NEVER been able to up my min pressure above 5. I've bumped it up to 6 several times before, once for at least a month, and again for at least a week and could never adjust. I've never done it on the RESMED, so I'll try it eventually.

[zonker]

I've bumped it up to 6 several times before, once for at least a month, and again for at least a week and could never adjust. I've never done it on the RESMED, so I'll try it eventually.

bear in mind that you don't have to go up from 5 to 6 straight up. the resmed allows you to increase the pressure by .2. you could move to 5.2, give it time to settle in and then go up 5.4. it'll take awhile, but it may just help you adjust to the higher pressure in the long run.

[LSUJonno]

Good intel, thanks. I was thinking about adjusting EPR first tho, thoughts?

[Pugsy]

I was thinking about adjusting EPR first tho,

Why?

Are you aware that if you are starting the pressure at 5 cm then the max drop on exhale using EPR is only going down to 4 cm because the machine won't go any lower.
If you actually need more pressure rather than less then the drop during exhale when using EPR is going to potentially compromise the machine's ability to hold the airway open.

Now if you are just wanting to see if using EPR helps you sleep better in general...worth a try.

[LSUJonno]

Now if you are just wanting to see if using EPR helps you sleep better in general...worth a try.

Correct. I don’t think I’m doing a great job of explaining my struggles. But I would think with an overall AHI score sub 2 I should wake up feeling refreshed but for some reason I don’t. So I think there is something that the machine is doing to interrupt my sleep that is affecting me differently than apnea events.

[Pugsy]

Now if you are just wanting to see if using EPR helps you sleep better in general...worth a try.

Correct. I don’t think I’m doing a great job of explaining my struggles. But I would think with an overall AHI score sub 2 I should wake up feeling refreshed but for some reason I don’t. So I think there is something that the machine is doing to interrupt my sleep that is affecting me differently than apnea events.

Worth trying but maybe your issue isn't related to sleep or the machine. I know we all like to hope that the machine can fix all the world's problems but it can't. Been there and done that myself and it's a big pill to swallow when we figure out that there's a problem we want the machine to fix but can't.

Things to look at when we run out of stuff to try.
1...Hours of sleep? Maybe you just need more sleep.
2...Are those hours of sleep fragmented with multiple wake ups?
3...Take any medications of any kind..even OTC? Medication side effects is a prime culprit.
4...Any other physical or mental health issues going on that might impact sleep or how you feel during the day?

A nice low AHI by itself doesn't mean much. There is so much more than just AHI.