Central Sleep Apnea Treated But Still Feeling Bad

[Dormeo]

You are most certainly not alone. I'm glad you'll be posting a chart or two before long. I think you will get some expert help interpreting what the data can tell us.

One of the worst things for me about feeling unrested during the day is that I therefore also feel stupid, irritable, forgetful, and pessimistic. This is not exactly the best frame of mind in which to try to push doctors and insurers to provide needed help.

I'm struck by the fact that you're running every other day. That is excellent, for all kinds of reasons, and I hope you'll be keeping it up.

[Chequebook]

Thanks.  My iron has come out within limits in several blood tests.

I attach the first 3 images i took.

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And another 3.

[SarcasticDave94]

Can we have a do over on the Daily? No calender would be excellent. Just for the reference I'd like 1 shot of your Orange band AHI info (but not exclusive of daily graphs) after calendar removal.

Tell us also the following:

Mode ASV or ASV Auto

Pressures, you'll find EPAP as single setting if in ASV mode or EPAP Min & Max if ASV Auto mode

PS Min & Max

I think I can figure out these set numbers, but just tell us, thanks.

PS actually one daily shows settings. Did it change?

Addition 2, very important, How do you feel with this ASV? Reasonable detailed. You like x or don't like x...

[Sleeprider]

What I'm seeing on the charts posted are settings in ASV auto with EPAP min 4.0, EPAP max 15.0, PS min 3.0 (best guess) and PS max 15. Your most recent chart suggests that EPAP does not in crease much, but the summary data shows Max EPAP as high as 12 cm. As best we can tell there are nearly no events while using ASV and oxygen saturation levels are excellent as we would expect with your very good tidal volume and minute vent. While we might find settings that are less disruptive, the actual results look pretty good.

[SarcasticDave94]

Upon further review:
It's possible ASV therapy could be optimized a bit. But I'm not certain this is actually the culprit, given the complaint of tiredness while the ASV therapy is showing decent numbers. It may be something with your meds, or maybe some other ailment. FWIW I'm not seeing some bad trend as of yet in the ASV numbers to base a setting edit, but I'll keep looking to try and help.

[AFM1]

I'm struggling despite using a Resmed Air Curve 10 for for mainly Central sleep apnea and obtaining AHIs of well under 5, usually under 1.

I'm a man just turned 60.  Throughout adulthood I've snored and never felt I got a good nights sleep. 30 years ago I had a rhinoplasty that helped my snoring a little. My feeling tired during the day was manageable until about 5 years' ago, when I began to feel really tired, began to get severe nose pain, became depressed and had to give up work.  I got rid of the depression and reduced the nose pain but the tiredness continued.  After a limited home sleep study I was given a CPAP machine that helped, only for the benefit to tail off.  I began to develop restless legs syndrome, for which I take Pramipexole/Mirapex with some degree of success, and felt increasingly cr@p during the day.  A full sleep study showed central sleep apneas with periodic limb movements and I was upgraded to the Aircurve 10.

I generally have no problem falling asleep and get an unbroken night's sleep but I still feel cr@p and sleepy during the day, a bit like having a hangover without the headaches (and the fun the night before).  Dozing appears to make no difference.  Blood tests show blood sugar at the high end of normal but not much else.  Taking vitamin supplements makes no difference.  I also have periods of chronic dry coughing that I put down to the Aircurve use.

If I doze on my back without the Aircurve I wake up with a start feeling as If I'm suffocating.  Despite keeping fit, running 2-3 miles every other day, suggesting that there is no problem with my lungs, I can feel smothered during the day if I'm triggered.

I'm at my wit's end to identify a cause for my feeling cr@p.  All I'm left with is being stuck with it, my brain somehow being damaged or malformed and beyond the capabilities of modern medicine.  It's making life barely worth living (there's no chance that I'll give up, so don't be concerned).

Has anyone got something that they can help me with, if only to let me know that I'm not alone?

When I was reading your post I thought you were writing about me as I have been trialing diffrenent machines till my sleep doctor told me that I have Complex Sleep Apnea, which is Obstructive Sleep Apnea and Central Sleep Apnea, and have been prescribed a Resmed AirCurve 10 CS Paceware, my sleep doctor told me that when I am asleep my brain forgets to tell me to breath and this particular Resmed machine blows extra air tell my brain to breath, I also have restless legs and have been percribed a tablet called Clonazerpam (Paxam 0.5)
I think you have the wrong machine?

[SarcasticDave94]

AFM1,

The ResMed AirCurve 10 CS Pacewave is your version of the ASV that I have on this side of the big pond, and what Chequebook has as well. Central Apnea being the medical necessity for ASV in all 3 of us.

[Chequebook]

Thanks all.

The symptoms were there before I went on meds, I went off all them for a while and reintroduced them gradually, all without any noticeable change, so I'm pretty sure that it's not them.

My machine's settings and results seem to be in the right area, so I.m back to square one. Either there's a hidden illness, my brain has been rewired unhelpfully or it's all psychosomatic. I'll keep going.

[Sleeprider]

This kind of question comes up quite often on the forum, and unfortunately, we really don't have an answer. It seems after starting therapy, and achieving good results, some people still feel fatigued or "off" and there is no apparent reason for it. As much as we would like to help or point to a cause, usually we come up empty. "I wish I knew" is an understatement.

[Dormeo]

Sleeprider, one quick question. I see on the posted Summary page that Chequebook was measuring O2 and respiration for a while several years ago. I lack the expertise to interpret what shows there, but it looks as though it was highly variable from month to month. Could there be any value in monitoring those variables again?