1 year and 8 months down the line and still no real improvement

[SleepProblems]

Hiya,

First of all, I would like to thank all of you for helping everyone with sleep disorders! Hopefully you can help me as well.

I started therapy in October 2018, 1 year and 8 months ago, and have been trying to use my Philips DreamStation Auto CPAP every day since. My therapist set the machine to C-Flex 1, CPAP mode, fixed 6.5 pressure which just didn't do it for me. I soon learned there is an administrator menu so in consultation with my therapist i started tweaking my settings, my therapist actually wanted to leave it on his settings.

My current settings are A-Flex 3, AutoCPAP mode, Min 8.5, Max 9.5 pressure (average pressure never got below or above these values). Making my AHI scores go down, some days/weeks well below 1 and I feel a little less sleepy/better during the day and making me sleep through the whole night instead of waking every few minutes-hours. Feeling better is especially noticeable when I forget wearing the mask, I then wake up feeling ran over by a truck again. I try to go to bed around the same time every day and falling asleep hasn't been an issue since starting therapy, on average I sleep between 7-8 hours a night now.

However, getting out of bed has been increasingly getting harder towards feeling ran over by a truck again. I even tried tweaking my settings again with no luck, my AHI went up so put the settings back letting my AHI go down again. After all this time using my machine, I had hoped to get rid of the remaining issues. The most important being:
- Always feeling unrested. I can't remember when I last woke up feeling rested (maybe never?), I would like to have at least 1 morning of feeling like a normal person would. In contrast, my partner wakes up every day feeling rested and ready to take on the world.
- Brainfog. Almost always have this. With exception of some days/moments where I feel unclouded and like that’s how I’m supposed to feel.

PS: I have a feeling I might be breathing wrong, shallow breathing. My charts show a lot of flashy colors, and I don't really understand what that means.

Questions:
- I'm not really fond of using sleeping pills so I try to never use them, but the few time where I did use them, my statistics were at their absolute low point nearing 0 AHI. Last time of using a pill being at least three or four months ago. Normally I wake up feeling like I have been running a marathon during the night which lasts well trough the morning/day, my breathing is rapid for the first few minutes after turning of the device and my chest is tensing up, but with those pills I don't. My theory is this happens because your whole body/brain is relaxed and you don't really dream. Why does this really happen and can understanding this be part of my cure?
- I've only used the ResMed AirFit P10 nasal pillow. Is it possible to figure out if i sometimes breathe trough my mouth AND/OR the nasal pillow came lease for a bit to leak air? I'm not sure if either is the case, but at least I can try to fix these problems then.
- Do you see anything wrong with my charts and how can I go about making my life and AHI even better?

Not sure where to start so here are my charts for the past three nights, the AHI has been higher then normal (the average for the last 6 months is 1.6):

[Pugsy]

Welcome to the forum.

Can you provide a little more information so the forum members can have a bit more history in an effort to come up with ideas to perhaps help you with your problem?

How old are you?
Do you take any medications of any kind? If so, what?
Do you have any other physical or mental health issues that could impact your sleep quality or how you feel?
How many hours of real sleep are you averaging?
Do you wake often during the night? If so, any idea why...how many times?

[SleepProblems]

Thanks for replying!

How old are you?
I've just turned 35 years old. I'm a male who's living in the Netherlands. I think I've got everything sorted, good (IT desk) job, girlfriend, nice house etc... not any worries about anything. I've had sleeping problems growing up and can't really remember when the last time was where I felt like a 'normal' healthy human being, it has happened though... so I do know what it feels like. I'm pretty healthy, eat enough vegetables and fruits, I don't do any sports at the moment and maybe i'm a little overweight now (BMI 26.5) but that wasn't the case before.

Do you take any medications of any kind? If so, what?
I don't take any medication and i'm perfectly healthy, before I got my machine I was checked inside and out for all sorts of things because I lost weight way to rapid for no reason. I really don't feel healthy though, my body is always feeling really really really bad and my head feels clouded all the time, feels like I don't rest at all. I'm generally pretty happy and in a good mood though.

Do you have any other physical or mental health issues that could impact your sleep quality or how you feel?
Not that I know of. During my many checkups in the past, I've had to talk to a lot of different specialized doctors, they all basically told me I'm a healthy and sober guy. The unrested feeling is probably causing some physical/mental health issues down the line though.

How many hours of real sleep are you averaging?
Good question. Before my therapy started I felt like I slept about 2 hours a night. I kept waking up all the time and sometimes had trouble falling asleep, mostly had problems staying asleep and sometime not sleeping at all, even tough I was really tired. When I started therapy my therapist asked the same question, the statistics said I was wearing the mask for +/- 8 hours a night, I felt the exact same as before though, even feeling aware of being awake and breathing trough the device, he called it sleep perception disorder. After I was allowed to tinker with the settings I've had no problems falling asleep, staying asleep or not sleeping at all, of course there's some rare days where I do wake to early and can't fall back asleep with the device on. Since I changed my settings I've lost the ability to remember my dreams, before I remembered a lot of dreams, but at least I feel like i sleep trough the night now. There's been 3 nights total where I've had extremely realistic dreams/nightmares where I wake up feeling like it was real and is still happening. One of those waking dreams (hypnopompic hallucination?) felt so real, I woke up my girlfriend by screaming 'where are my animals?' (not pets, animals) and was halfway down the stairs in my clothes, before she got trough to me that we don't have any pets... it took a good 3-5 minutes before I realized what happened and snapped out of it, haha. I think I sleep 7-8 hours a night now, just don't feel like it.

Do you wake often during the night? If so, any idea why...how many times?
Not anymore. It only happens when there's an alarm going off or my girlfriend is making a large noise going to the bathroom.

Extra
My sex drive was pretty high, but it's almost gone now. Weird, because I only read stories where the person has almost no sex drive that is restored by CPAP therapy. If I missed anything do ask!

[Julie]

Curious (and I know you said pressures don't change much on their own) but most using Auto machines set the min. pressure between 5 and 10 or so, but the max generally gets set = and left - at 20... have you tried putting it there?

And a lot of people have gained a little wt - even just 10=15 lbs - while at home now, and it can make a difference to how things go.

And C/Apap should help with 'marriage' problems once it gets set up right... more 02, more fun , but you could always ask your MD if there's anything else that should be looked at.

[Pugsy]

Remembering dreams doesn't mean we don't have them. It just means we haven't woke up either during one or right at the end of one long enough to form a memory of the dream.
We can dream in any sleep stage as well. It's not limited to REM stage sleep.
Not remembering dreams is actually a good thing because it means we didn't wake up during a dream. I always feel much worse after a night filled with dreams because it means my sleep quality itself wasn't go great for whatever reason.

On paper...your software report doesn't look all that bad. Certainly not bad enough to maybe stand up and scream "fix me and you will feel better". Obviously all the nosy questions asked was to see if there were other factors that might explain not feeling as good as the numbers would expect us to feel. Thank you for taking the time to answer them. So often I asked the questions either get no answers or partial answers. Annoys the heck out of me when people ask for help and then when questions are asked in an effort to get a grasp on the big picture people don't bother to help us try to help them. So thank you for that. I probably will have further questions...I always do because I am nosy and I like to look at as much history and detail as I can but for now I will say this...I don't think your sleep quality is optimal for some reason or other....you've got some stuff showing on the software report that if it were on my report I would equate with poor sleep.
The periodic breathing while brief and random...I am betting is related to at least arousal breathing. We can have arousals and not remember them. The snores....they can disrupt sleep as well. Lots of things can and will disrupt our sleep and not everything that disrupts our sleep is fixable with the cpap machine.
So while not a horrible report...it's got a few indicators going on that could possible explain your symptoms and certainly worth trying to fix them with perhaps some small adjustments with the machine. Never hurts to try.

I have personal experience with your type of machine and brand so I know how the Respironics auto algorithm works. It's good in some ways and not so good in other ways and how a person responds to either is a coin toss.

I can't guarantee that with a few tweaks we will have success but we can at least try.

Here's what I propose and would do if I were in your shoes.
Increase the minimum pressure 9.0 cm
Stay in auto mode and increase the maximum pressure to 15. I know you say it never went very high but right now the machine's little hands are so severely tied with the extremely tight range that it can't do its job. Lets give it a chance to do what it is designed to do.
Keep AFlex at 3 if you are comfortable with it. By having such a tight range you aren't letting the machine offer that feature to its full ability to help you in terms of comfortable breathing.
Snores are an indication that the airway is still trying to collapse. The lower AHI means the collapse isn't growing up into full grown apnea events but snores can still disrupt sleep. Anything that can potentially disrupt sleep is unwanted.
The fix for snores...more pressure and with this particular machine...that usually means more minimum because it simply doesn't always increase the pressure when in auto mode fast enough or aggressively enough to stop the airway from trying to collapse.

The maximum pressure setting doesn't really matter what it is or if the machine even gets near it.
The minimum pressure setting is going to be your most critical setting. It needs to do a good baseline job of holding the airway open and preventing the airway from trying to or actually fully collapsing. The maximum is just there to take care of special pressure needs that happen sometimes.

Almost every Respironics user that I have ever seen (including myself when I used that machine) ends up needing more minimum pressure to finally feel some real benefit from nice clean reports.

I also want you to do some homework and learn how to identify arousal breathing on the flow rate graph.
Watch the videos here
http://freecpapadvice.com/sleepyhead-free-software
I know a lot of what they are talking about doesn't relate to you but the arousal breathing and how it shows up on the flow rate graph is universal. Sometimes easy to spot and sometimes not but it gives us at least an idea as to what the real sleep quality might be since we don't always remember arousals.

I don't expect an overnight miracle with a small change in the minimum from 8.5 to 9.0 or allowing the machine to do its job with more maximum but it will give us a starting point for further experiments. I need to see what the machine will at least try to do if it could without its little hands being tied so severely. .
Give this little change 3 nights...learn about how to identify arousal breathing...and report back.

[SleepProblems]

@Julie:
Thank you! You actually made me look a lot better at my OSCAR stats in the past... from the beginning of june 2019 until the end of April 2020, it was setup as Min 8.5, Max 20. Before that it was on Min 6.5, Max 20 for half a month to test. Back then I looked at Sleepyhead and saw it saying 95% pressure is averaging 8.5 every day so i changed it thinking that was the correct value for my minimum pressure. I feel kinda stupid now that I just changed that setting without understanding what it really means, I just read something about having to setup OSCAR at 90% for my device as well, further scewing my data. I will change my Max setting back to 20. Cheers

@Pugsy:
Wow! Thanks for the detailed post! I thought the Min/Max would screw with my breathing when I have a bad night, leaving me with a way to high Min forcing me to breath really fast... that's why I lowered the Max. I will watch the movies and read up on as much as I can, also I will change my settings to Min 9, Max 20 tonight and will report back in a couple of days.

[Pugsy]

90/95% number of anything (leak numbers are also reported with this metric) just mean AT OR BELOW that whatever for 90/95% of the night. People often don't understand or remember the "or below" part or how it works. It's really just a number that is easily skewed by any number of things and means essentially nothing in terms of where minimums and maximums need to be set or in the case of leak numbers it doesn't really give a clear picture as to how bad or good leak management might be.

I personally rarely give any 90/95% number more than a passing glance when I look at my own reports or even when helping people by looking at their reports.

[huydts]

Hey dude.

While reading your story I was like; hey that's my story.
Anyway I would like to get in touch with you since we have similar problems, and 2 people know more then one (generally)

Hey kerel,

Ik kom ook uit Nederland en ben 35 jaar oud. Ietsjes te zwaar maar niet vet. Nu een jaar bezig maar het schiet niet echt op.. Allerlei onderzoeken gehad etc. Het gaat wel iets beter maar niet wat ik gehoopt en verwacht had.

Enfin, als je eens wil ouwehoeren per mail, app messenger of whatever stuur me dan een PBtje hier

Succes!

[SleepProblems]

Hiya! So, I tried 3 days on Min 9, Max 20. Unfortunately, it didn't go to well. I haven't slept this bad/fractured in a long time, however... somehow, I feel a lot better now. I'll put my stats under my text to make it easier to read. Also I watched the video's you told me to and I noticed that a lot of what happens in the video's is false flag data, I checked some of my own and it looks like the machine is marking it correctly most of the time... but I'm a beginner so probably wrong.

@huydts: Ouch! Sucks that you also have similar problems that aren't really getting resolved with therapy (yet). It's kinda hard to explain what I really feel like to people that don't have this problem, it feels really bad to always have to answer negatively to questions 'how did you sleep?' and 'how are you feeling?'. Maybe I can help somehow, so I'll send you a PB! I want to stay anonymous for now.

Day 1:
Low AHI, woke up earlier than normal, had a little aerophagia, felt worse than the day before but fell back asleep without the machine which for me means I feel even worse.

Day 2:
Decent AHI, woke up multiple times, with one time removing the mask and lying away for more than a hour. At first, I tried to keep breathing through my mask, but every time I tried to exhale the machine pushed air back again, forcing me to breathe really fast (hyperventilating -> arousal?). My chest was pounding, a lot of aerophagia. Put the mask back on and fell asleep for a bit again. Ended the night falling back asleep without the mask, so I’m feeling pretty bad, almost the same feeling as a bad hangover.

Started reading up on A-Flex and EPR. Sounds to me EPR is more my thing, too bad it's not for the Dreamstation.

Day 3:
Not sure what happened, took my mask off shortly after falling asleep but have no recollection of this. Woke up around 6:00 feeling okay-ish (much better than last month, not sure why because normally not sleeping with the machine on means I feel really bad), after that I fell asleep again but on my chest, so I felt (luckily only a little) worse again after waking... good thing is that my chest is feeling a lot better today, also no aerophagia.

Old data:
Also, I went through my old data and exported the usable data to Excel to do some calculations. By usable I mean the data where the machine was setup the way I want to use it and where there was a high enough maximum value.
In total that would mean around 300 days of usable data.

When I set my Min at 6.5 and my Max at 20. The 90% pressure would average 8.45, the Max average would be 9.6 and the max Max would be 10.7, in this case the 90% would never be the Min value.

When I set my Min at 8.5 and my Max at 20. The 90% pressure would average 9.09, the Max average would be 10.5 and the max Max would be 13.5, in this case the 90% would be the Min value for 51.10% of the time.

Of course, I’m missing some statistics here for the Min value, but it seems to me my sweet spot should be between Min 8 and Max 13.5. I calculate the Max because I get aerophagia sometimes and in this whole dataset my Max has never went above 13.5, maybe it should be even lower than this?

My conclusion of the last 3 days and old data:
Min 9 feels to high, it forces me to wake-up, get aerophagia and hyperventilate. When my settings were on Min 8.5, Max 20 for 274 days in a row I was averaging 1.51 AHI. While this AHI is pretty low, I still felt really bad so started playing with the settings (incorrectly, making me feel worse). Should I try a value of Min 7, Max 20 for a while to see what the 90% averages to? Should I try a fixed value of 8? Am I interpreting my data wrong and want to change to fast now?

Sex drive:
Also, what I meant with my sex drive being almost non-existent, it started going down rapidly AFTER I started CPAP therapy. Before that it was really high, that's why I find it odd that other people get a boost in their sex drive when they start doing CPAP, mine is doing the opposite. Guess I'll tackle this one problem at a time, I'd rather wake up feeling normal then have a good sex drive anyway. Sorry not sorry, girlfriend.

Day 1:


Day 2:


Day 3:

[Pugsy]

Try a minimum of 7 with max of 14 (doubt you will go near it) for 3 nights and report back on sleep quality and the aerophagia status as well.
Flex of your choice.
Make note when you compare reports as to how many snores and FLs you might be seeing and compare to the reports with the 9 cm minimum. These data points are important but not included in the AHI which is easier to evaluate.

[SleepProblems]

Hiya,

Today I finished my tree days on Min 7, Max 13 and I feel a lot better now. I woke up better then normally every day and my drive came back a little, also I have no problems with my chest anymore, no aerophagia either. Downside is that my eyes are now twitching all day long and my AHI went up. I woke up maybe 1 time every night because my girlfriend went to the toilet. When looking at the reports I only had 1 FL on both tests, there's a lot more hypopnea events though and snores look similar to me. Looking back at my Min 8.5, Max 20 stats, my AHI used to be between 0 and 3 averaging a 1.8. Why do I feel better with a higher AHI?

Should I up the minimum to 7.5 to try that for a few days and after that to 8 for a few days to compare that as well. What do you think Pugsy?

[Pugsy]

Yes. Try another small increase in the minimum for 3 or 4 nights.