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Central Sleep Apnea Treated But Still Feeling Bad
#41
RE: Central Sleep Apnea Treated But Still Feeling Bad
Thanks for these, Chequebook. I hope Sleeprider will spot some avenues to explore.

Have you had a chance to visit your doctor again with full description of your problem in hand? I'm concerned about the extent to which you're being affected by whatever is going on, and it seems quite possible to me that it isn't related to sleep in any direct way.
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#42
RE: Central Sleep Apnea Treated But Still Feeling Bad
Charts look good, and there is nothing obvious to improve the therapy. Pressure is in an appropriate range, AHI low, and you don't have excessive pressure spikes from the ASV. I think checking for Lyme, blood workup including testosterone and some other general health evaluations is the best path to follow. I wish I could be more help, but the therapy is doing what is needed for sleep disordered breathing and maintaining a good SpO2.
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#43
RE: Central Sleep Apnea Treated But Still Feeling Bad
Thank you.  Your interest and support help keeps me going.

That's one less possibility to spend time on.

On the wider issues, I'm at a complete loss.  Looking back, as a kid I slept more than my brothers and peers and rarely, if ever, felt I got a proper night's sleep as an adult. I may be more prone to depression than the average person, but I've done well in my life and I'm reasonably confident that sleep issues are the precursor to depression, not the other way around.  I have RLS & PLMS, but 3 different medications have had little effect.  My occasional depressions are resistant to medication, which doesn't surprise me as I don't have any of the thought issues typically associated with it.

I've looked at Lyme, blood workup including testosterone and other general health evaluations all without success.  I don't know what to go back to doctors with.

Getting it off my chest, alas my current lethargy and depression are a vicious circle despite my best attempts to break out.  Currently I just don't have the motivation, energy or application to do more than the basics each day.  Furthermore, COVID has led to a reduction in medical services in my area, making my next steps harder.  I just get through my days as best I can.  Although I often think I just can't go on, that's just fatigue taking over; I do my best to remain positive and am in no risk of doing anything silly, whether self-harm or suicide.

Thanks again.
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#44
RE: Central Sleep Apnea Treated But Still Feeling Bad
My heart really goes out to you. I'm glad to hear you don't think of self-harm or suicide. If you ever do, please reach out for help immediately.

This got buried in an earlier post, but I did have some ideas about following up with your doctor, and I'll paste them in below. Here, I wanted to let you know more about autoimmune diseases and fatigue.

Here's a discussion from an NIH-funded paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6691096/

For a number of years in the 1990s, I had an autoimmune disease in the connective-tissue disease family. Fatigue was my primary complaint, but a rheumatologist picked up on some other signs and symptoms that let him to do some specific blood tests to help with diagnosis and treatment. But probably the most general screening test would be for anti-nuclear antibodies (ANA). (I was one of the lucky few whose illness finally went into a long-lasting remission.)

From earlier post:

I would recommend pressing your doctor for a fuller work-up. To prepare for that, I would recommend working on a full description of what treatments/tests you've been through, how each turned out, and what you feel like during the day. There are, for example, subtle distinctions among fatigue, tiredness, and sleepiness, so you might think about the best way to describe your state. It also helps doctors understand your symptoms if you can give examples: e.g., "I used to be able to strike a new balance in my chequebook in my head, but now I have to write it out," or "When I try to work, I get confused and have to go over my work many times," or "I would no longer trust myself to drive."

It would also be great if you would write everything down and give the written account to the doctor. Ideally, your wife would be with you for the consult. The perceptions of another person can be useful to the doctor, she can help make sure nothing slips through the cracks, and she can help take notes on what the doctor says.

You might want to try keeping a journal (really, just a piece of paper) noting how you feel, the problems you encounter, the exercise you take, the meds you take, etc., day by day while you're waiting for an appointment. Take that with you too.

One other thing. It's possible you have primary depression, and if you do, finding the right medication is more than a matter of "here, try this," as I know from friends and family with severe depression. Finding the right medication is about as hard as finding the right mask! But it's also possible that your sense of hopelessness and your cognitive impairment are secondary to something else that is amiss. That's what I am really hoping you can pursue with your doctor.

I hate playing at amateur diagnosis, but I do want to mention that a wide range of autoimmune diseases have fatigue as a leading symptom. A full blood screen for autoimmune diseases could be a good idea.
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#45
RE: Central Sleep Apnea Treated But Still Feeling Bad
Chequebook, after briefly scanning through this thread I want to reiterate what I said earlier. your situation sounds a lot like mine. some of my history is mixed apnea, asv, plm, absolute exhaustion, lethargy, cognitive impairment, depression-like symptoms and more.

I've been able to reduce my ahi to acceptable levels with, in reverse order of efficacy, apap, vauto and asv. yet my sleep continues to be fragmented and I rarely experience that wonderful feeling the morning after restorative sleep we're all striving for. at this point I attribute all my current woes to plm. meds have helped some but not enough.

lethargy and depression in apneacs may very likely be a result of sleep deprivation. mine lifted considerably when I shifted from asv to bilevel vauto. I did so knowing vauto doesn't treat ca but I was desperate to get some decent sleep and wonder(ed) if some of my ca was in response to plm. looking at my asv flow rate I could see pressure support quickly and dramatically rising and falling during plm episodes (I learned to recognize my respiratory response to plm in the flow rate) without resolving the flow limited breaths between kicks. I didn't think much of it until I tried the vauto, which eliminated the pressure swings by enabling more or less fixed epap and pressure support. it was only after vauto that I came to realize those asv pressure support swings - of which, like plm, I was totally unaware - must have been wearing me down.

I'm still struggling with plm and still waiting for more than an occasional restorative sleep, but I feel much much better on vauto than asv, despite a higher ahi. cognition has improved, lethargy declined, depression-like symptoms completely gone. I will continue to badger my doc for alternate plm treatments and I encourage you to do the same. repeated arousals and fractured sleep that come with plm are nearly as debilitating as apnea. you've mentioned plm throughout this thread and it explains much of our ongoing issues.

so: 1. try vauto if you can. apap/cpap might be worth a try with fixed pressure and epr but vauto is better, having a high trigger setting to better handle mixed apnea and a wider range of pressure support. 2. be relentless in pursuit of a plm remedy, probably with prescription meds of some kind, because pap won't help and probably exacerbates plm.

I don't think I can improve my pap therapy very much and I think now the only way I'm going to reach that next level of restedness is to more effectively reduce my plm. maybe you too.

good luck and please let us know if you eventually find some relief from rls/plm.
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#46
RE: Central Sleep Apnea Treated But Still Feeling Bad
Thank you. I really appreciate the time and effort that i know you've put in to your replies. My brain has gone AWOL today, with the hot weather (a really dry 35C/95F in the shade) exacerbating my loss of concentration, so I've not really take them in and will try again later.
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