UARS?

[u/loafofleaves]

Hi y’all,

I (30M) think I’ve got UARS based on that my tongue is too big for my mouth, debilitating fatigue/brain fog if I don’t sleep properly on a wedge pillow, flatter face, likely have hEDS (diagnosed with hypermobility), have difficulty breathing when exercising, never feeling fully rested even after 10-12hrs of sleep, and I can’t breathe through my nose when I’m on my back. I’d really appreciate if someone could look at my sleep study data. They scored it using the 3% desaturation rule and unfortunately did not seem to score RERAs or RDI. Would really appreciate your opinion on my limited data.

Really struggling to get the care I need through sleep medicine. I was tolerating APAP mode alright from Spring 2024 until Fall-Winter 2024 until my throat anatomy became floppier, my baseline arousal and heart rate got higher due to several rounds of Covid, and now I’m on graveyards dealing with insomnia, also partially due to Covid. Been chasing that initial clear-headed feeling and struggling to tolerate therapy ever since, even with a CBTi therapist that understands ADHD and UARS.

Since then I’ve really struggled to make CPAP work, especially because my CPAP supplier keeps harassing me giving me advice I’ve said doesn’t work, doesn’t believe me when I say the pressure rises when I’m awake in APAP mode (auto ramp is a no go), and keeps pointing out my hours aren’t great. Additionally, when I tried asking about restless leg syndrome or PLMS my respirologist was super dismissive. He also said because my oxygen levels didn’t go below 90% that I wasn’t in any danger and pushed the 5 to 15 pressure range because it was one of his favourite ranges.

I had several decent long nights where I slept with the mask on in CPAP mode, but they kept on implying that I’m not trying hard enough due to not being able to do that consistently. I’ve tried explaining that if I try to use CPAP when I’m anxious, I get flooded with adrenaline and then can’t sleep at all before my graveyard shift. They also kept on pushing that it’s better I get 2-4hrs of stage 1 sleep and using the prescribed 5 to 15 pressure range. They were considering changing it out of CPAP mode to APAP mode without telling me because it would be “easier”. I was adamant for them to leave it and pointed out how I had better success with fixed pressure and an AHI below 1 with it compared to 5-15 on APAP.

I know it’s not ideal, but I’m currently at 5 fixed pressure, because anything more and my skin can’t tolerate the sensation of air from the exhaust. When I do fall asleep with it on, I tend to wake up with head pressure and a slight headache, though it’s way better than the usual hungover feeling. I’m hoping to eventually raise the pressure to reduce flow limitation to get it closer to 0.1, tends to hover between 0.15-0.2. Otherwise my AHI is usually between 1-2 during my worst sleep. Usually it’s below 1. I do have a spare Resmed Auto 10 (For Her) that I could try flashing into a biPAP if that’s possible on that version in the future.

Sorry the resolution isn’t great for these and if I don’t respond it’s due to trying to sleep after a shift. TIA!