u/social_work_me

I'm still trying to make APAP work for UARS 12 months after starting. I'm currently at 9-16cm and subjectively, the results are about the same as anytime I've had settings of 8-9 minimum to 14-15 max. My 95% pressure is around 9.75, but was in the 10s at one point (~6m ago, settings about 9-15, but I've had a lot of setting changes since then).

For context, i had a titration study 3m ago which only took me up to 8cm and said they resolved all RERAs, but I still had 30 spontaneous arousals. My sleep med provider reviewed raw data and confirmed these were actually RERAs which were just not long enough to count. He said they greatly decreased at the 8cm point hence my current 9-16cm. He also diagnosed me with idiopathic hypersomnia and prescribed modafinil, but I don't feel good on it and don't want a bandaid for this problem.

I do not feel rested and have poor energy, adhd-like symptoms, almost daily headaches, and bruxism. The first few days after I started APAP last year, however, I felt euphoric. The regressed to a more manageable "really good", then closer to where I started but definitely not as bad.

Do I keep going up as long as i can tolerate it? Besides aerophagia due to needing higher settings, can someone explain to me like i'm 5 as to why bilevel helps with UARS more than APAP?

I know there is lack of research on this, but are there any "credible" sources I could cite if I end up asking my provider about going to bilevel?

What unexplained health issues or just weird things about your body do you know think are caused or worsened by UARS?

I'm still in the recovery process and figuring out the right settings, but for me, I had a heart arrhythmia which is not typically hard to treat. However, I needed 3 cardiac ablations and it still came back again, though only briefly. That is pretty much unheard of for this condition due to 90%+ success rate of the procedure, so I have to assume the UARS I've had for 20+ years exacerbated it.

My worsening symptoms which lead me to the UARS diagnosis included lightheadedness, light/sound sensitivity, nausea, poor appetite, trembling hands, restless legs at night, and extreme fatigue in the afternoons. I didn't these could be due to UARS or that APAP would fix them, but within a month of starting, they all resolved.

I also have had a worsening sex drive (basically none) for several years. 2 months into treatment, it returned (didn't stick around, but again, i'm not doing as well as those first 2 months).

I learned the usual headaches and grinding my teeth were not from stress or that I don't "just need more sleep than other people" as one doctor told me.

IBS-C - still holding out for some benefits here, but understand it can be related to autonomic nervous system issues.

Edit: another unexplained abnormality I have is mild leukopenia. It was identified around the time I started to feel much worse, so I've wondered if it could also relate. Maybe time will tell!

Edit 2: I couldn't exclusively breastfeed because my baby was losing too much weight - Peds thought my breast milk was just too low-calorie. I cant see how some extra stress on the body from poor sleep wouldn't at least contribute to this problem.