Where to start?
Thank you, thank you, thank you UARS Reddit people!! If I could hug every person on this thread who's ever posted, I would.
I've had sleep issues for at least 25 years. First sleep study was 20 years ago, mild sleep apnea, several micro-apneas per hour, but the concerning part was 31 micro-arousals per hour. I asked the lab what that meant. They didn't know. Brought it to Stanford Sleep Clinic. They didn't know either. So it sat untouched for years.
About five years ago I had another study, an at-home one, still just "mild apnea" (AHI of 7 that time, 5 the first time), no arousal data this time. Got a CPAP, didn't want to deal with it for such a low number so didn't use it.
With increasing exhaustion, I started using it a few weeks ago. I wake every few hours normally and having the mask on made it harder to fall back to sleep. So I have never made it past four hours with it on.
AI helped me explore the situation and mentioned UARS. Desperate for insights, I came to this thread.
This is where I discovered OSCAR and the idea of capturing data from the CPAP. Of course a doctor looks at the AHI, all looks good and then never mention this.
Well my magical UARS peeps, I finally saw the flow limitation cycles and the flow rate waveform is a textbook crescendo pattern, jagged lines, plateaued tops, brief recovery, repeating over and over.
Everything clicked in that one picture! Suddenly every downstream health issue makes sense and the behavior stuff tied to a hypervigilant nervous system, all of it.
Anatomy-wise, a lot of this makes sense. Large tongue (I can touch the tip of my nose with it, and I have a big nose). Small jaw with an inconsistent bite, upper jaw overlapping the lower in some spots, even in others, under in others. Doctors over the years have mentioned small nasal sinus openings and a small throat. I still have my tonsils too.
Now I need to convince doctors this is real and that CBT-I isn't the fix they think it is.
I'm guessing an ENT is the first step, but the bigger interventions (MSE, MMA) are a lot to sit with. I have emailed my sleep doc to see if there are adjustments I can make within the CPAP or if I can get a biPAP. Would love it to be this simple but not sure I see myself ever fully settling with a mask on my face,
For those further along, what do you suggest at the optimal first few moves based on my anatomy and what you have learned on your journey that you wish you knew sooner?
Thanks again! Immensely grateful for this group.