5 hours ago
Am I still having flow-limitation? Persistent fatigue & insomnia.
Hi everyone,
Background about my OSA, PAP history, symptoms, and general health
I was diagnosed with OSA (AHI 16, nearly all hypopneas) in 2020, after having bad insomnia for a long time (waking up for hours in the middle of every night, as well as unwanted early-awakening). I've been using PAP continuously with ~100% compliance since February 2021, and it has been somewhat helpful, but I am still having persistent fatigue, insomnia, and other symptoms associated with sleep issues (trouble focusing, anxiety, mild depression). Aside from that, I'm a fit and healthy man in my early 30s with no other health issues and not taking any medications. I prioritize my health, sleep hygiene (double blackout shades, cool bedroom, morning sunlight, etc.), exercise daily.
I could write a lot about all my experiences with providers and the things that I've tried, but I'll keep it short. The first sleep specialist I saw told me that it was impossible for me to have sleep apnea, since I was young and fit and a healthy weight. I went through a frustrating process of being told to work on my sleep hygiene despite it already being nearly perfect. I saw a sleep psychologist who encouraged me to demand a sleep study, and low-and-behold, it came back positive for sleep apnea. I started out on APAP, then CPAP, and in Dec 2022 switched to ASV since I learned from Dr. Barry Krakow that ASV can be more comfortable and more effective for patients such as myself who more closely resemble the "UARS" profile. I also added a custom MAD (Mandibular Advancement Device oral appliance) that I used at the same time as my ASV. I had a second in-lab overnight sleep study in April 2023, while using my ASV + MAD, to evaluate the effectiveness, and the results came back with 0 AHI and 0 RDI (though I only slept 4 hours), and the Dr. said that my breathing is "perfect". But I continue to have persistent fatigue and insomnia (primarily early awakening), and am now considering pursuing MMA surgery. I had a DISE that showed complete tongue base collapse, and the Dr. who performed the DISE told me that I have "a TON of obstruction". I have also stopped using my MAD since it caused jaw pain and bite issues.
My primary question is: is it possible that my sleep-disordered breathing (SDB) is not being fully treated by ASV?
I have not experimented a lot with changing my pressure settings, since my Dr.'s discouraged it, and I also tried several times increasing the pressure but found that it induced more aerophagia, which I found uncomfortable.
Attached screenshots
I'm attaching several screenshots from a recent night's sleep on Nov 23rd 2024. Two screenshots are zoomed in on the flow-rate graph so you can see the flow profile of individual breaths. Do these breaths look flow-limited? I'm seeing a lot of what I believe might be "class 2" and "class 4" flow limitations. One of these screenshots is from early-on in the night, within 20-30 minutes of falling asleep, where the pressure is relatively low. The second screenshot is later in the night where my pressure increases.
Next steps/experimentation/questions
-I have started an experiment to increase my PS by 0.4cm, every 3 nights, and am planning on seeing how I feel as well as monitoring my flow rate graph for flow-limitation. Is 0.4cm every 3 nights too fast or too slow? I have seen various recommendations, ranging from "increase pressure no more than 0.5cm every 1-2 weeks" to "increase pressure by 1cm per night". And when you get a titration study, they increase pressure by 1 cm every 5 minutes. But maybe this would be too fast to titrate for flow limitations. Especially flow limitations that do not seem to be flagged by OSCAR/my device.
-I ordered a pulse oximeter too that I'm hoping will give me some useful data.
-Is it worth trying a soft cervical collar?
-It looks like OSCAR might not be flagging all of my flow limitation events. Is there a way to get it to flag them? It would be helpful to have a quantitative number for this.
Thanks in advance for any help. See attachments below:
Background about my OSA, PAP history, symptoms, and general health
I was diagnosed with OSA (AHI 16, nearly all hypopneas) in 2020, after having bad insomnia for a long time (waking up for hours in the middle of every night, as well as unwanted early-awakening). I've been using PAP continuously with ~100% compliance since February 2021, and it has been somewhat helpful, but I am still having persistent fatigue, insomnia, and other symptoms associated with sleep issues (trouble focusing, anxiety, mild depression). Aside from that, I'm a fit and healthy man in my early 30s with no other health issues and not taking any medications. I prioritize my health, sleep hygiene (double blackout shades, cool bedroom, morning sunlight, etc.), exercise daily.
I could write a lot about all my experiences with providers and the things that I've tried, but I'll keep it short. The first sleep specialist I saw told me that it was impossible for me to have sleep apnea, since I was young and fit and a healthy weight. I went through a frustrating process of being told to work on my sleep hygiene despite it already being nearly perfect. I saw a sleep psychologist who encouraged me to demand a sleep study, and low-and-behold, it came back positive for sleep apnea. I started out on APAP, then CPAP, and in Dec 2022 switched to ASV since I learned from Dr. Barry Krakow that ASV can be more comfortable and more effective for patients such as myself who more closely resemble the "UARS" profile. I also added a custom MAD (Mandibular Advancement Device oral appliance) that I used at the same time as my ASV. I had a second in-lab overnight sleep study in April 2023, while using my ASV + MAD, to evaluate the effectiveness, and the results came back with 0 AHI and 0 RDI (though I only slept 4 hours), and the Dr. said that my breathing is "perfect". But I continue to have persistent fatigue and insomnia (primarily early awakening), and am now considering pursuing MMA surgery. I had a DISE that showed complete tongue base collapse, and the Dr. who performed the DISE told me that I have "a TON of obstruction". I have also stopped using my MAD since it caused jaw pain and bite issues.
My primary question is: is it possible that my sleep-disordered breathing (SDB) is not being fully treated by ASV?
I have not experimented a lot with changing my pressure settings, since my Dr.'s discouraged it, and I also tried several times increasing the pressure but found that it induced more aerophagia, which I found uncomfortable.
Attached screenshots
I'm attaching several screenshots from a recent night's sleep on Nov 23rd 2024. Two screenshots are zoomed in on the flow-rate graph so you can see the flow profile of individual breaths. Do these breaths look flow-limited? I'm seeing a lot of what I believe might be "class 2" and "class 4" flow limitations. One of these screenshots is from early-on in the night, within 20-30 minutes of falling asleep, where the pressure is relatively low. The second screenshot is later in the night where my pressure increases.
Next steps/experimentation/questions
-I have started an experiment to increase my PS by 0.4cm, every 3 nights, and am planning on seeing how I feel as well as monitoring my flow rate graph for flow-limitation. Is 0.4cm every 3 nights too fast or too slow? I have seen various recommendations, ranging from "increase pressure no more than 0.5cm every 1-2 weeks" to "increase pressure by 1cm per night". And when you get a titration study, they increase pressure by 1 cm every 5 minutes. But maybe this would be too fast to titrate for flow limitations. Especially flow limitations that do not seem to be flagged by OSCAR/my device.
-I ordered a pulse oximeter too that I'm hoping will give me some useful data.
-Is it worth trying a soft cervical collar?
-It looks like OSCAR might not be flagging all of my flow limitation events. Is there a way to get it to flag them? It would be helpful to have a quantitative number for this.
Thanks in advance for any help. See attachments below:
