Long time CPAP user still fatigued

[enigmatic]

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Been using for about 6 years with mostly very fatigued with or without machine.
Use Resmed AirSense 10, AHI is alway very low (avg1 to 2). Have mostly OA and CA on OSCAR, but recent 2 night overnight study showed 0 CAs.
Sleep Dr. said maybe I should try ASV even though I have 0 CA on overnight or go see chronic fatiguge dr. or neurologist.
I also noticed criterion for scoring ASV is AHI 5, I barely reach that. 

Weird thing about OSCAR is after I set EPR to 2 (miracle btw) I get 0 OAs 2 nights in row, and about 6 CAs.
What I don't understand is I monitored my sleep with a camera and I still see my stomach diaphram breathing in and out as well as can see
periodic stream in mask hood telling me air is moving/oscillating I thought CA implied chest not breathing in and out for duration of event, and if I zoom in,flow rate looks flat at
CA.

I did notice 2 CAs occured during awake and/or scratching mask.

big leak rates are itching mask and tossing turning.

Any thoughts?

[enigmatic]

   
   

zoom in on some CAs.

[SarcasticDave94]

The small amount of CA aren't likely worth pursuing, especially with ASV. I'm not against ASV as that's what I had last. If they get past CAHI 5 frequently, OK then you should consider taking that battle on. Possible actions: You could diminish ramp usage, and you might be more comfortable.

[samsam71]

Have you checked out other possible causes of fatigue besides your sleep?
CPAP has made a world of difference to me, but there are also many other factors at play.
Stress, anxiety, depression, exhaustion.
Maybe get your bloods looked at, Thyroid, I've been diagnosed with a very high iron count which is also a contributing factor to being tired, as is low iron.

[enigmatic]

@samsam71. I've tested for most of the things you mentioned, thyroid, testosterone, Iron, B-12, D etc.. everything fine. One other factor, my sleep dr. thought I had hypersomnia (too much sleep) and put me on sunosi - went to ER with carpal spasms and couldn't sleep for two days. Long story short I have anxiety and ER said it multiplied greatly with that drug.

Realizing these sleep centers do very little to troubleshoot, I started to look more closely and one thing I realized is those 10-11 hour readings on CPAP machine, were three hours of not falling asleep - that's why I started to use a watch and cameras and look at more detail at onset time and duration as well as analysis via OSCAR. I was really getting 8 or less most of the time. And I cannot nap during day even though extremely tired. I'll just sit for an hour and never sleep. I realize there is some form of insomnia now, and am trying to follow sleep etiquette and stuff like CBT.

I also thought to look into toxic poisoning, but physician thinks strong component is psychological.
I'm going to neurologist next and maybe chronic fatigue specialist. What's weird is sleep dr. said chronic fatigue people can't exercise without getting very sick. I can ride bike miles a day, even though I'm tired. I get very tired of being sent down rabbit holes though. Between that and dealing with APRIA, things like that make you want to give up.

[samsam71]

@samsam71. I've tested for most of the things you mentioned, thyroid, testosterone, Iron, B-12, D etc.. everything fine. One other factor, my sleep dr. thought I had hypersomnia (too much sleep) and put me on sunosi - went to ER with carpal spasms and couldn't sleep for two days. Long story short I have anxiety and ER said it multiplied greatly with that drug.

Realizing these sleep centers do very little to troubleshoot, I started to look more closely and one thing I realized is those 10-11 hour readings on CPAP machine, were three hours of not falling asleep - that's why I started to use a watch and cameras and look at more detail at onset time and duration as well as analysis via OSCAR. I was really getting 8 or less most of the time. And I cannot nap during day even though extremely tired. I'll just sit for an hour and never sleep. I realize there is some form of insomnia now, and am trying to follow sleep etiquette and stuff like CBT.

I also thought to look into toxic poisoning, but physician thinks strong component is psychological.
I'm going to neurologist next and maybe chronic fatigue specialist. What's weird is sleep dr. said chronic fatigue people can't exercise without getting very sick. I can ride bike miles a day, even though I'm tired. I get very tired of being sent down rabbit holes though. Between that and dealing with APRIA, things like that make you want to give up.

I would have thought that they would have picked up on Hypersomnia with your sleep study?

One thing I've been taking to help with insomnia and other issues is magnesium.
There's a bunch of video's on youtube by doctors you can look up.

[enigmatic]

I would have thought that they would have picked up on Hypersomnia with your sleep study?

One thing I've been taking to help with insomnia and other issues is magnesium.
There's a bunch of video's on youtube by doctors you can look up.

Yep, I take CALM (which is magnesium) and it does help some with the sleep onset.
My first sleep study was horrible, I told the dr. what if I don't fall asleep? He said, "I haven't seen that in all my years."
Well, I was the one who got less than half an hour of sleep and never trusted that study (If anything they should have stated insomnia, which they didn't
-- me being a noobie, didn't know what to look for), hence the 
recent 2nd study at home. My dr. thought it was hypersomnia, because he looked at RESMED history. What it doesn't tell you is that you could have 12 hour durations,
with only 7 being actual sleep (I verified this by looking more carefully at sleep state data and cameras).

The hypersomnia is very difficult to formally diagnose. The reason I was fairly certain I didn't have it (after researching), is one of the factors well known,
is people who have it almost immediately fall into sleep and REM (like 15 minutes or less)... my average was like two hours. 
What helped me to improve that was melatonin and CALM, which does help faster onset.

[enigmatic]

Has anyone thought to force the pressure settings to 0 CPAP (is it even possible or is there a min like 4), in order to establish comparison baselines (no therapy,
vs therapy, and is my AHI really that bad without?). Seems like a simple way to do a very simplistic overnight or even better comparison to quantitatively see if therapy is making
improvements over none. I think it would be a fairer comparison to the lab study, since the environment is the same, and they never give you the raw data or exact methods anyway.

[SarcasticDave94]

Most CPAP machines have a minimum setting of 4, there's one or two that go as low as 3 cmH2O

[enigmatic]

@SarcasticDave94
Thank you, I thought I saw that somewhere. It's a shame, because a zero baseline would add confidence to our belief the machine is helping (specifically, for those suffering with or without it). I did see your earlier comments to eliminate the ramp - I did for two nights (doesn't bother me at all), and didn't see much change quantitatively, or qualitatively. Any other experiments would be welcome. Even thinking about trying fixed cpap as an experiment.

I still have the nasal tube from the overnight study, it has like a serial port at the end. Anyone know of some kind of a small overnight machine that would track and record the breathing rate?
pressure free of course.