markovian.anomaly - Therapy Thread

[markovian.anomaly]

I posted a similar thread on ApneaBoard, not realizing it's different from cpaptalk (where I tend to browse more frequently). I thought I'd post here too, I hope that's okay. I didn't find anything in the rules against it.

I was originally diagnosed with sleep apnea around mid-2020 (age 25, weight ~210 lbs, height 5'10") after years of poor sleep and fighting with insurance to even authorize a sleep study (let alone the machine). Initial WatchPat sleep study showed RDI of 18.4, AHI of 15.1, AHIc of 0.6 and 0% CSR. Numbers were twice as bad on my left side as my right side, not sure why. After the sleep study I was given an AirSense10 on default settings, and over a few days the tech adjusted the settings to APAP 8-12, EPR3, no ramp (based on my comfort rather than therapeutic efficacy, all done remotely). I felt significantly better on the machine, although still somewhat tired and I often wake up with back/leg/shoulder/neck pains (will be relevant later). AHI on the machine was usually <1.

I had no titration or in lab sleep study (it was COVID to be fair), and no one's ever looked at my data beyond the MyAir reports. Throughout the years, my weight went up to 250 lbs and then down to 235 lbs (stable from 2023-2025) but I never got any adjustments. I've seen a sleep medicine NP or MD once a year since 2020 with no changes or comments of any form, and I kept chugging along. In 2020 I was also diagnosed with restless leg syndrome (tried melatonin for a bit but it didn't work, no treatment otherwise). I also have bruxism and started wearing a night guard since 2022 which has helped a lot with jaw pain and headaches.

In September 2025 (age 30, weight 235 lbs) I went on Zepbound (insurance approved for sleep apnea) since my blood sugar/cholestrol were high, combined with several weight-related issues (fatty liver, several joint problems, back issues). Around December 2025 I hit 200 lbs and started noticing issues with CPAP: waking up feeling much worse, much higher average leaks on the MyAir app, and AHI up to 4. I started trying to fix this a few weeks ago (I asked the sleep NP and she just said pressure might be too high). I figured out I'm mouth leaking and started taping my mouth and switched to a smaller mask, successfully eliminating the leak. But I still didn't feel entirely great in the morning. I also experimented a bit with lower pressures and fixed pressure and EPR settings-- nothing helped much and I ended up at 7-12 APAP and EPR 3 (just 1 cm2 H2O below original setting). My current weight is 178 lbs.

Throughout my "re-education" on sleep therapy I discovered that, for all 3.5 years I have data on this SD card, my tidal volume is a bit low (320-360), whereas an ideal body weight calculation indicates a range of 450-600. Crucially, I have noticed series of larger, "weird"-looking breaths (see example) every 3-7 minutes, and many full arousals (wake up and adjust position) even on nights with very low AHI. I have had these events for years.

I decided to buy an SpO2/HR monitor and a camera to figure out what's going on, and discovered that every single one of these "events" is associated with an HR spike and a "shaking" event (happy to send some videos via PM but not publicly). No events are associated with SpO2 drops. Usually my HR is around 60-65 during more regular sleep stages, but during these shakes HR spikes up to 80, 90, or even 120 in a few events! The "shakes" usually involve my torso, and often, but not always, my legs. A few events I found even involved my arms moving up and down, and some involved my head shaking side to side (including seconds after clear arousals!). It's very weird. The events seem to last 2-10 seconds. Some events are associated with CAs, but I don't know if these are real central apneas.

The data I'm showing below comes from an especially bad night. I woke up that day feeling incredibly tired and groggy, and with a lot of back/shoulder/leg pain. My quad muscles were burning and hurt to touch. There's tens or even a hundred of these shake events that night. The videos also show that I wake my wife up about once an hour (although she doesn't remember) and she's been realy tired lately so I'd love to spare her the suffering too.


The sleep medicine NP says we'll try to get a lab sleep study approved by insurance during our next appointment in May but I wanted to do my own homework since I don't know if I'm getting good care after realizing no one has ever looked at my flow. Also, I lose my insurance at the end of July and my out of pocket maximum is currently maxed out from MRIs, so this is a good time to advocate for a new machine or tests if something is needed. My last set of blood tests (Ferritin, sodium, potassium, Mg, Ca, etc.) from 6 months ago were normal, and they've never been low these past few years. I asked my PCP and she's ordering more tests that I'll get in a few days.

I'd really appreciate any thoughts and advice, both in terms of what's going on and any thoughts about tests etc. I can get with my PCP over the next 3-4 weeks so I can be ready to advocate for myself during the sleep medicine appointment.

Sleep HQ link for that night: https://sleephq.com/public/7f3783bb-824 ... 8851cbf1b4
Some observations based on the video that may be useful to evaluate sleep HQ: https://pastebin.com/qPxW5jB2

Current medications: concerta (>year), Nurtec (1 month), Zepbound (6 months), Rabeprazole (6 months). Have been on many different meds over past 4 years with these events.
Health conditions: ADHD, GERD, several back and joint problems. Nothing that seems relevant.