[CPAP] Newbie with CSAs, struggling with CPAP therapy

[Llort]

Thanks, Rainbowfish.  

I think it was a good appointment with the nurse at the sleep center.  We were able to talk about ASV instead of oxygen (it was going to be one or the other).  I've now got a stress echocardiogram scheduled for next Monday and a an overnight titration study with ASV in two weeks.  I'm honestly amazed they can get me in that quickly.  She said she'd request the DEM adjust my EPR in the meantime, and order an ASV to replace the APAP.  She warned me not to get my hopes up too high about the ASV fixing all my symptoms.  She thinks I probably have an underlying neurological disorder and need to see a neurologist.  She recommended I get a referral through my PCP.  My PCP wanted to see her notes, because she doesn't think a neurologist will want to see me for central sleep apnea.  I had a brain MRI that looked normal in August, which makes it less likely a neurologist will want to see me.  But the sleep center nurse may well be right about a neurological disorder causing the CSA and the daytime dysautonomia symptoms.  I guess we'll have more data after the overnight study in the sleep lab.  

One thing they never warn you about chronic conditions is how you'll spend a bunch of time bouncing between specialists who disagree on whose responsibility you are.  I really wish their were a specialty that handled everything needed for conditions like autoimmunity and post infectious illness.  People with long covid, Lyme, ME/CFS, and complicated autoimmunity get pinballed through the system, having to make separate appointments to address different symptoms of the same illness.

[Llort]

I've got my PSG sleep study/ASV titration in the lab tonight. I'm excited and nervous (I only slept 22 minutes during the one in December). They've prescribed me a couple Ambien in case I can't fall asleep on my own. Any advice to make the most of it? I'll take a little heating pad, pillow, a snack, a book, podcasts, and a little battery-powered camping lantern (puts out a little warm light, as opposed to the fluorescent or LED lamp they have there). I'll try exercising a bunch tomorrow. I'm most worried about insomnia. I'm hoping I can get natural sleep.

[Sleeprider]

Congrats on getting things to move along so quickly. Let us know how it turns out. Most people that need ASV find they get a great sleep once the machine is providing the therapy.

[Llort]

Alas, it was too good to be true.  The sleep center called today and said insurance approval was still pending (apparently they have until March 28th to allow or deny).  So they canceled tonight and rescheduled my ASV titration for April 27th.  At least I'll get on the waiting list for cancelations.  The nurse said they'd try lowering my APAP pressure some more, but not to expect it to change anything (I'm not).  She said there was no way they could get me an ASV before the titration test.  

If I hadn't had a pretty good week of sleep between March 12 and 19th (AHI about 5), I'd really despair.  I wish I could figure out what the difference was.  

Hopefully you're right about my getting excellent sleep once I've got the machine, Sleeprider!

~Dani

[Llort]

Woohoo! I finally got my Resmed Aircurve 10 ASV Machine this week! I'm hopeful!

I'm still finding my oxygen going below 88% sometimes (I've got my Wellue O2 Ring set to buzz when I get to 86%).

I'll post an update when I've got some good data. I sure appreciate the help here - I've learned tons from this board.

~Dani

[Llort]

Update:

The ASV has brought my AHI way down!  Yay!  For the most part, my oxygen saturation stays above 88% without supplemental O2.  There are things I don't understand, such as why the Flow Limitations seem to have gone way up.  Is that an ASV thing?  

I'm really glad for the advice here to keep pushing for an ASV machine.  It took nine months, but would have taken a lot longer without the education I got here.  

I'm adapting to the ASV well, but still struggling with dysautonomia symptoms when awake.  Sometimes my heart rate is in the 90s near the end of my sleep session, and my resting heart rate stays pretty high for the first few hours I'm awake. I slam down water and electrolyte drinks (like 2 liters in 3 hours), which helps, but I still feel pretty awful for the first half of the day (nausea, weakness, tremors, low fever and chills, tinnitus, difficulty concentrating, dizziness).  I wake up seeing a dark spot (like an afterimage) in the center of my vision for about 10 seconds - anyone ever had this or figure out what it is?  At first I thought it was hypoxia, but I'm getting them even when my pulse oximeter shows good perfusion.  These spots were the first indication I had anything wrong with my sleep (started seeing them upon waking over a year ago).

Sometimes I feel like my sleep was good enough (over 5 hours, low AHI, not interrupted, decent O2), but after I've been up for a few hours, I get a spell where I'm cold and chilly, skin is crawling, muscles twitching, and I take a 2-3 hour nap with the ASV.  After the nap, I actually feel okay.  My fitbit usually doesn't even register these naps as sleep, probably because my heart rate stays above resting.  And yet they're more restful than my main sleep!

Since this dysautonomia started last July, I've consulted my GP, ENT, rheumatology, sleep clinic, allergist/immunologist, and neurologist.  They all basically say it's someone else's problem.  Neurology says it's sleep and vice versa, rheumatology is waiting for GP to adjust thyroid meds, GP wants rheum to use immunological meds and not change thyroid meds. 

I guess my big questions are:  
-Do my OSCAR charts show anything I need to work on (like the Flow Limitations that aren't on my APAP charts)?
-Has anyone else had dysautonomia (or related: POTS/MCAS/long covid/ME/MS), and did PAP therapy help?   How long did it take?
-Has anyone else woken up seeing an afterimage spot, and did you ever figure out what it was?
-How do you know when your symptoms are sleep related vs. some other condition?

Thanks!
(attaching OSCAR charts of typical APAP vs. ASV for comparison)

[DevinJones]

Congratulations, Dani, on finally getting your new ASV device after skillfully navigating the complicated, frustrating medical system and insurance process regarding DME for sleep apnea.

The ASV sure does eliminate a lot of central events. I, too, had a lot of central events with my AirSense 11 before I got my AirCurve 10 ASV.

I'm sure the experts here will soon suggest some setting adjustments to fine-tune your ASV treatment.

[Sleeprider]

Try raising PS min to 2.0 and lets see if we can cut some of the flow limits and hypopnea.

[Llort]

Okay, thanks Sleeprider. I'm kind of surprised it's as high as it is, given how low I was on APAP. I'll give it a try though. ~Dani

[Sleeprider]

Lets see what happens. You can always go back.