Four months daily use of CPAP, zero effect, need some help please

[Camus]

The whole idea with the changes I recommended was to make using the mask and machine more comfortable.
I didn't really expect to see much change in any of the numbers because they don't really need to be changed anyway and what I proposed wasn't expected to change anything all that much.
I learned a long time a go that simply being more comfortable can make a difference in how I sleep and when I sleep better I feel better.
I really didn't expect you to report a miracle with these settings. If they help it will be a gradual improvement.
Give yourself a couple of weeks at these new settings and see how things are going then. Give your body a chance to become adjusted.
After 3 or 4 nights get me a screen shot of the detailed report. I do better with the nightly detailed reports and the graphs than I do with just the statistics. But don't worry about doing one for last night at this time. I want you to have a few more nights at these new settings and then see what the detailed report might show.

I understand and until now it has been a more pleasant experience. Though the difference is not as large as I suspected it would be after the first night. Either way, thanks a lot.

I have collected the information you asked of me. I called the hospital and got the report in my mail a few days ago. It was hard copy, so I have scanned it. The first page contains something in Dutch that I have translated above it. Luckily the rest is all in English. I have erased all personal information of me and the physician.

Here you can find the five page sleep study: https://imgur.com/a/Ayl8GgP

I have also made screenshots of Sleepyhead of the last five days.

Sleepyhead of the last five days: https://imgur.com/a/UVA2EtP

[kteague]

Just one observation, that sleep study showed no REM sleep, a stage in which it is common to have more events. Any recommended treatment based on insufficient information has a good chance of being inadequate.

[Camus]

Just one observation, that sleep study showed no REM sleep, a stage in which it is common to have more events. Any recommended treatment based on insufficient information has a good chance of being inadequate.

So the suggestion would be to do the study exam again? I find it weird though that my physician did not suggest this. Thanks for the observation, I will look more closely into it!

[kteague]

Just one observation, that sleep study showed no REM sleep, a stage in which it is common to have more events. Any recommended treatment based on insufficient information has a good chance of being inadequate.

So the suggestion would be to do the study exam again? I find it weird though that my physician did not suggest this. Thanks for the observation, I will look more closely into it!

Not necessary to repeat testing. You have a diagnosis. My comment was more retrospective than anything, and to mention that sleep studies aren't always a full picture of what we're dealing with. A data capable machine makes that not matter so much as far as effective treatment. Matters most when a diagnosis is missed or severity is underappreciated based on incomplete information. As a side note, you don't happen to have problems with leg movements by any chance? Just asking because they can cause fragmented sleep. Trying to cover all bases.

[Camus]

Not necessary to repeat testing. You have a diagnosis. My comment was more retrospective than anything, and to mention that sleep studies aren't always a full picture of what we're dealing with. A data capable machine makes that not matter so much as far as effective treatment. Matters most when a diagnosis is missed or severity is underappreciated based on incomplete information. As a side note, you don't happen to have problems with leg movements by any chance? Just asking because they can cause fragmented sleep. Trying to cover all bases.

Understood. So the valitidy of my diagnosis stands, but perhaps not the severity.
I just asked my girlfriend and she said not have noticed me moving my legs much at all at night. It might be because I use a CPAP now. I do have daily pain in my legs, especially at night. Sometimes the cramps in my legs make me wake up, but I don’t know if this has much to do with sleep apnea.

[kteague]

If nothing else pans out and you want to see what your legs do during sleep, you could video yourself. Random movements now and then are normal. For there to be a limb movement sleep disorder, you'd look for repetitive movements that are rhythmic and stereotypical in appearance. The movements look like a tension or contraction and release of anywhere from the big toe, or foot, or lower leg. These are not the same as charley horses. At least for me, they were not as intense as a charley horse. Honestly though, I'd first invest my energies into optimizing your CPAP experience and assessing your meds.

[Camus]

If nothing else pans out and you want to see what your legs do during sleep, you could video yourself. Random movements now and then are normal. For there to be a limb movement sleep disorder, you'd look for repetitive movements that are rhythmic and stereotypical in appearance. The movements look like a tension or contraction and release of anywhere from the big toe, or foot, or lower leg. These are not the same as charley horses. At least for me, they were not as intense as a charley horse. Honestly though, I'd first invest my energies into optimizing your CPAP experience and assessing your meds.

Ok, thank you for the tips. First I’ll work on tapering off the meds and adjust the CPAP if possible (for that I’m still curious to what @Pugsy has to say about the documents I posted ). If it doesn’t help, I will film myself sleeping to see the leg movement.

[Pugsy]

The reports after the slight changes...nothing much of great excitement on them but then I didn't really expect to see much.
Only thing I noticed might be the couple of nights where there was obvious very fragmented sleep where you turned the machine off at least once on one night and on another several times. Makes me wonder if the fragmented sleep is a factor in how you feel.
I know first hand that it seriously impacts how I sleep and feel. Been having some old dog issues lately that is totally trashing my sleep quality.

[Camus]

The reports after the slight changes...nothing much of great excitement on them but then I didn't really expect to see much.
Only thing I noticed might be the couple of nights where there was obvious very fragmented sleep where you turned the machine off at least once on one night and on another several times. Makes me wonder if the fragmented sleep is a factor in how you feel.
I know first hand that it seriously impacts how I sleep and feel. Been having some old dog issues lately that is totally trashing my sleep quality.

It probably is a cause. It was difficult, but I didn't take my mask off this past night and simply stayed with my eyes closed waiting until I would fall asleep again. Not feeling any different today, but I understand that takes a longer time.

Did you see anything worth mentioning about the sleep study? The low saturation got me slightly worried, but I guess that is "normal" for people with sleep apnea.

[D.H.]

The stats say you're doing well, but the way you feel says otherwise.

One thing I would try is raising the max pressure, since you have an auto.

Since your AHi is fairly low, I don't know if this will help in any major way. However, give it a try.

Also, there are other reasons that you might be feeling tired. For instance other medical conditions can be responsible, whether they are classified as sleep disorders or not. Examples are Narcolepsy, diabetes, cardio-vascular disease, allergies, hay-fever, flu, or colds.

[Pugsy]

I saw nothing on your sleep study that wasn't expected for someone with your diagnosis and the OSA isn't borderline by any means.
The desats are to be expected. I went to 73% during my diagnostic study. The most import thing now is that the desats no longer happen and they won't be if there is effective cpap treatment and the OSA was the only cause for the desats.

There is a very strong positional aspect to your OSA....worse on your back which is fairly common.
Surprisingly the hyponea index though was so remarkably reduced when on your side but the OA index was.

If that was my sleep study report.....cpap is the next logical step. I wouldn't want to go the positional route all by itself because of the desats and the fact that hyponeas are still important and they we still bad enough to take notice when on your side....and finally staying on one's side is much easier said than done. I wouldn't want to risk no therapy if this were my report.
Sometimes positional therapy works well enough but sometimes I wouldn't want to risk it.

Did you have any of these symptoms pre cpap therapy?
Morning headaches?
Waking up during the night to pee?
and if you did....have these symptoms stopped or reduced?

Or was your primary complaint pre cpap just generalized fatigue?

On paper (at least per the cpap reports) your OSA is being treated very well but I wonder if the fragmented sleep and inability to either fall asleep or stay asleep is playing more of a factor in how you feel now. Essentially sleep quality is a factor in how we feel and that isn't always so easy to fix with cpap. I speak from personal experience here. My OSA is very well treated but most of the time my sleep quality sucks big time for various reasons and thus I feel like crap for various reason and none of them can be fixed by the machine.

Let's try an experiment so we can maybe better evaluate sleep quality itself.
When you are laying there awake and can't sleep...every so often reach over and push the on/off button so that we get a definite marker where the machine was off and then back on again.
And if you wake up during the night...do the same thing again and if you don't fall asleep fairly quickly in the middle of the night after a period of time...reach over and push the button again to turn off and right back on again.
Don't worry about watching the clock or anything like that...we just use the breaks in therapy to know when you were for sure awake.

It's very possible that you just need more time before you actually feel those good numbers but while "giving it time" we can still do some detective work in an effort to see if there is something else impacting sleep besides the OSA.

I don't remember if you are taking any medications of any kind (even OTC) but if you are we need to dig deep in the side effects as part of that detective work.

[Camus]

The stats say you're doing well, but the way you feel says otherwise.

One thing I would try is raising the max pressure, since you have an auto.

Since your AHi is fairly low, I don't know if this will help in any major way. However, give it a try.

Also, there are other reasons that you might be feeling tired. For instance other medical conditions can be responsible, whether they are classified as sleep disorders or not. Examples are Narcolepsy, diabetes, cardio-vascular disease, allergies, hay-fever, flu, or colds.

The max pressure is on 15 at the moment, but I don’t think I’ve ever passed 11 or 12. Would it make sense then to put it higher?

The medical reasons are interesting to look at. I have a dust allergy. I also have an anxiety disorder, which had made my sleeping less efficient. I have some arrhythmia’s; my heartrate can go up to 160bpm when sedentary, though does not happen often and is caused by the anxiety (that’s what my physician told me).

[Camus]

@Pugsy
Thanks, that’s good to hear. I was slightly worried about the desats.

Yes, I can’t sleep on my back. As far as I know I don’t do it anymore, though most times I wake up (with cpap) I am lying on my back.

I’ll tell you the backstory:
I’ve had issues with fatigue for many many years. Four and a half years ago it was getting worse, so I decided to do a sleep study. The results came back and said I had positional apnea. The doctor then told me to sew a tennis ball on my sleeping t-shirt and that should fix the issue. I moved cities shortly after that and left it how it was. The fatigue got worse, but so did my anxiety. I developed an anxiety disorder that year and kind of forgot about my apnea. The psychologist told me it was usual to feel fatigued with my condition, so I worked on treating that (both with cbt and later medication, Cymbalta, which I’m still on. You have informed me about it’s effect on sleep and I want to slowly stop using it). The fatigue got somewhat better when my anxiety got a bit better, but that was for a short period. After a while I returned to a doctor and asked for a sleep apnea treatment. They wanted to do a new study to see if it was still a problem. This time the study came back different (the one you saw).
All in all, I have been battling with fatigue for around ten years and it has gotten much worse over the past four. I rarely have to get out of bed to pee, but without the cpap I do wake up more often and snore a lot. I have continues pain in my legs, especially at night. Headaches are a daily problem, I cannot remember a day without it in the past ten years.

Thanks for the tip. I will do that from now on. The past night I woke up twice (that I know of), so it was not that much.

[D.H.]

Probably if you raise the mas pressure to 20 it won't go any higher than it's already going (meaning no effect).

You need to look for any other medical issue, known or unknown.

[Snoregone Conclusion]

The tennis ball "solution" is an absurdly badly conceived method when you think about it: to reduce one sleep disturbance contributor, replace it with another one!

A more reasonable solution to adapt is comfy pillows to prop you on your side, and not have room to roll onto your back, for the same reason. At least, so far as trying to do the positional thing...