08-02-2021, 03:51 AM
Need advice on UARS and CPAP treatment
Hi, all,
Really sorry in advance for the long post, but I want to share as much information as possible. I'll break it down into sections, and I've attached my CPAP results for the first two nights, and you can download my PSG results here: https://1drv.ms/u/s!Asc45368ezQs4HuGYR6D...f?e=unehah. Thanks in advance to anyone and everyone who replies. From the bottom of my occasionally palpitating heart, I really appreciate all the work you guys do to help others get better.
TL;DR
31 male, classic apnea/UARS symptoms, ruled out a bunch of other possible causes, diagnosed deviated septum and inferior turbinate hypertrophy, did a PSG (link above) that showed no apnea but possible UARS, got a SleepStyle Auto covered by insurance, PLEASE HELP!
Background
So, I'm a 31-year-old ostensibly human male and have had issues with daytime fatigue and sleepiness, brain fog, ADHD (diagnosed but never treated with ADHD meds) and anxiety (with full on panic attacks since 2019, but now very successfully treated with Effexor) since at least my teens, and lately an elevated heart rate and heart palpitations (supposedly anxiety-related and harmless based on 24-hour Holter monitoring and a heart ultrasound).
Luckily, my GP is great and tried to help as much as possible, but all the specialists she sent me to always said I was physically perfectly fine, and the neurologist I saw to check for a sleep disorder summarily dismissed me as just being depressed. After years of doing all sorts of blood tests (including B12 and D3), a hormone panel, stool tests, etc., which always came back normal, exercising religiously, trying all sorts of elimination diets for months, and trying about 5 or 6 antidepressants, none of which helped at all, I've more or less exhausted all my options.
Recently, after nearly 10 years of constant rhinitis, I went to the 4th or 5th ENT, who finally decided that my deviated septum and inferior turbinate hypertrophy warranted surgery. I was scheduled for this June 15, but as my luck would have it, I got a text from the office two weeks before the surgery saying that they were short on nursing staff, so they had to postpone it until October 2022. Yay.
Sleep study
It finally clicked for me recently that I couldn't remember the last time I woke up feeling rested, even if I slept for 8 hours or more, which is usually the case, although I do occasionally have trouble falling asleep or get periods where I wake up after 5 to 7 hours and can't fall back asleep, but that's usually due to external stress factors. So I went to get an in-lab PSG done, which showed I didn't have apnea (AHI 3.8), but I had a total arousal index of 14.6 (15 respiratory, 36 leg movement and 64 "spontaneous" in total), mostly concentrated in the REM phase (24.0), and a prolonged REM latency (345 minutes) with reduced REM sleep (12.1%). Interestingly, the report said I had 0 RERAs, but I've read on this board and on Reddit that that's basically impossible and their setup likely just didn't monitor for them. I slept over 8 hours and only remember waking up for short periods to adjust my position, so I basically slept just as well (heh) as I do at home. Link to my results is in the first paragraph.
Getting a CPAP machine
I then saw a pulmonologist who looked at my results and said they looked pretty normal and I think he was about to dismiss me; however, I then told him I'd read about UARS and mentioned my deviated septum, turbinate hypertrophy and chronic rhinitis, and the fact that my fiancée has recently told me a couple of times that it sounds like I'm choking during sleep. And I was in luck for a change, because he actually knew about UARS, so he concluded based on all that information that all of my various issues might actually stem from UARS, and said I might benefit from CPAP therapy.
He wrote a prescription and sent it to a local provider, who called me last Thursday to come in so they can set me up with all the equipment (insurance covers everything, including a new mask each year). I went on Friday and they gave me a choice between an AirSense 10 AutoSet or an F&P SleepStyle Auto. I told him that I don't have apnea (like the doctor specified in the prescription, probably due to insurance coverage), but UARS, so I wanted to get the AirSense 10 AutoSet, preferably the For Her, based on the recommendations I saw here. However, he didn't know about UARS at all and finally talked me into the SleepStyle, saying that it tracks more data and was easier to get used to because of the SenseAwake feature, and they could always help me with the settings remotely based on my results.
I was skeptical, since they obviously can't help me if they don't know a thing about UARS, but figured I'd just find some other software and switch to OSCAR when it gets support and dial it in myself. I checked the board when I got home and it turns out GuyScharf is working on SleepStyle support in the new version of OSCAR, so I got access to the beta test forum and downloaded the latest alpha version.
First two nights with the F&P SleepStyle Auto
I didn't use the machine on Friday because I went to an open-air gig for the first time in about 18 months and managed to overdo it with the alcohol because I very rarely drink nowadays. On Saturday, I set the SleepStyle to min. pressure at 6 and max. pressure at 11 with EPR at 2 and SenseAwake at 6 and slept for about 8 hours. According to OSCAR, SenseAwake was triggered 4 times and I had 1 apnea and 1 large leak lasting 2 minutes, but the pressure never went above 6. All in all, I slept about the same as any other night, although, granted, I was brutally hungover the day before and definitely didn't get enough sleep.
I spent most of yesterday evening looking through others' threads and concluded that the pressure might have been too low to do anything for UARS, so I turned off SenseAwake and upped the pressures to 9 and 12 with EPR at 3 to see what that does. Bad idea. I woke up a bunch of times during the night and slept supine for a lot of the time (I normally sleep exclusively on my sides, almost on my stomach), and experienced pretty bad aerophagia, burping constantly, and a bunch of hypopneas. I finally got up after less than 7 hours feeling completely exhausted and bloated. It took me a while to get at least most of the air out of my stomach and intestine.
Request for advice
Firstly, based on what I've described and the results of my sleep study, would you say the diagnosis of UARS is reasonable? I'm worried I might have been too eager to jump on it because I've been struggling to find a solution for so long, and the pulmonologist might have been happy to find any excuse to prescribe CPAP therapy because he's in cahoots with the supplier or something.
If you think I might, in fact, have UARS, I'd really appreciate some advice on where to go from here. For starters, I'm considering asking to switch to an AirSense 10 AutoSet (for Her, if possible), as I've noticed that the SleepStyle doesn't show or flag flow limitations, which, as I understand it, is essential for UARS. Since the guy I spoke to didn't have a clue about UARS and why the AutoSet for Her might be better suited to treat it, I would appreciate if someone could give me some pointers on what I should tell him, i.e., which features make it better.
After that, or alternatively, if you think I could continue with the SleepStyle, I would be eternally grateful for some help getting my settings dialed in, as I'm having a hard time with all the technicalities. Unfortunately, the pulmonologist I saw probably won't be of much help, as his report basically just recommended APAP at 4 to 20, which even the supplier thought was a bit weird, so I'm reluctant to ask him for more advice.
Lastly, please note that I'm from Europe, so I might not have the same options available as in the US or elsewhere and our medicine is way behind in certain areas. Even getting a PSG was a pain in the posterior, as I think there's only one clinic that does them here, so I had to go to a neighbouring country to get it done. But I'd nevertheless highly appreciate any and all advice and I'll try to figure out my local options where possible.
Really sorry in advance for the long post, but I want to share as much information as possible. I'll break it down into sections, and I've attached my CPAP results for the first two nights, and you can download my PSG results here: https://1drv.ms/u/s!Asc45368ezQs4HuGYR6D...f?e=unehah. Thanks in advance to anyone and everyone who replies. From the bottom of my occasionally palpitating heart, I really appreciate all the work you guys do to help others get better.
TL;DR
31 male, classic apnea/UARS symptoms, ruled out a bunch of other possible causes, diagnosed deviated septum and inferior turbinate hypertrophy, did a PSG (link above) that showed no apnea but possible UARS, got a SleepStyle Auto covered by insurance, PLEASE HELP!
Background
So, I'm a 31-year-old ostensibly human male and have had issues with daytime fatigue and sleepiness, brain fog, ADHD (diagnosed but never treated with ADHD meds) and anxiety (with full on panic attacks since 2019, but now very successfully treated with Effexor) since at least my teens, and lately an elevated heart rate and heart palpitations (supposedly anxiety-related and harmless based on 24-hour Holter monitoring and a heart ultrasound).
Luckily, my GP is great and tried to help as much as possible, but all the specialists she sent me to always said I was physically perfectly fine, and the neurologist I saw to check for a sleep disorder summarily dismissed me as just being depressed. After years of doing all sorts of blood tests (including B12 and D3), a hormone panel, stool tests, etc., which always came back normal, exercising religiously, trying all sorts of elimination diets for months, and trying about 5 or 6 antidepressants, none of which helped at all, I've more or less exhausted all my options.
Recently, after nearly 10 years of constant rhinitis, I went to the 4th or 5th ENT, who finally decided that my deviated septum and inferior turbinate hypertrophy warranted surgery. I was scheduled for this June 15, but as my luck would have it, I got a text from the office two weeks before the surgery saying that they were short on nursing staff, so they had to postpone it until October 2022. Yay.
Sleep study
It finally clicked for me recently that I couldn't remember the last time I woke up feeling rested, even if I slept for 8 hours or more, which is usually the case, although I do occasionally have trouble falling asleep or get periods where I wake up after 5 to 7 hours and can't fall back asleep, but that's usually due to external stress factors. So I went to get an in-lab PSG done, which showed I didn't have apnea (AHI 3.8), but I had a total arousal index of 14.6 (15 respiratory, 36 leg movement and 64 "spontaneous" in total), mostly concentrated in the REM phase (24.0), and a prolonged REM latency (345 minutes) with reduced REM sleep (12.1%). Interestingly, the report said I had 0 RERAs, but I've read on this board and on Reddit that that's basically impossible and their setup likely just didn't monitor for them. I slept over 8 hours and only remember waking up for short periods to adjust my position, so I basically slept just as well (heh) as I do at home. Link to my results is in the first paragraph.
Getting a CPAP machine
I then saw a pulmonologist who looked at my results and said they looked pretty normal and I think he was about to dismiss me; however, I then told him I'd read about UARS and mentioned my deviated septum, turbinate hypertrophy and chronic rhinitis, and the fact that my fiancée has recently told me a couple of times that it sounds like I'm choking during sleep. And I was in luck for a change, because he actually knew about UARS, so he concluded based on all that information that all of my various issues might actually stem from UARS, and said I might benefit from CPAP therapy.
He wrote a prescription and sent it to a local provider, who called me last Thursday to come in so they can set me up with all the equipment (insurance covers everything, including a new mask each year). I went on Friday and they gave me a choice between an AirSense 10 AutoSet or an F&P SleepStyle Auto. I told him that I don't have apnea (like the doctor specified in the prescription, probably due to insurance coverage), but UARS, so I wanted to get the AirSense 10 AutoSet, preferably the For Her, based on the recommendations I saw here. However, he didn't know about UARS at all and finally talked me into the SleepStyle, saying that it tracks more data and was easier to get used to because of the SenseAwake feature, and they could always help me with the settings remotely based on my results.
I was skeptical, since they obviously can't help me if they don't know a thing about UARS, but figured I'd just find some other software and switch to OSCAR when it gets support and dial it in myself. I checked the board when I got home and it turns out GuyScharf is working on SleepStyle support in the new version of OSCAR, so I got access to the beta test forum and downloaded the latest alpha version.
First two nights with the F&P SleepStyle Auto
I didn't use the machine on Friday because I went to an open-air gig for the first time in about 18 months and managed to overdo it with the alcohol because I very rarely drink nowadays. On Saturday, I set the SleepStyle to min. pressure at 6 and max. pressure at 11 with EPR at 2 and SenseAwake at 6 and slept for about 8 hours. According to OSCAR, SenseAwake was triggered 4 times and I had 1 apnea and 1 large leak lasting 2 minutes, but the pressure never went above 6. All in all, I slept about the same as any other night, although, granted, I was brutally hungover the day before and definitely didn't get enough sleep.
I spent most of yesterday evening looking through others' threads and concluded that the pressure might have been too low to do anything for UARS, so I turned off SenseAwake and upped the pressures to 9 and 12 with EPR at 3 to see what that does. Bad idea. I woke up a bunch of times during the night and slept supine for a lot of the time (I normally sleep exclusively on my sides, almost on my stomach), and experienced pretty bad aerophagia, burping constantly, and a bunch of hypopneas. I finally got up after less than 7 hours feeling completely exhausted and bloated. It took me a while to get at least most of the air out of my stomach and intestine.
Request for advice
Firstly, based on what I've described and the results of my sleep study, would you say the diagnosis of UARS is reasonable? I'm worried I might have been too eager to jump on it because I've been struggling to find a solution for so long, and the pulmonologist might have been happy to find any excuse to prescribe CPAP therapy because he's in cahoots with the supplier or something.
If you think I might, in fact, have UARS, I'd really appreciate some advice on where to go from here. For starters, I'm considering asking to switch to an AirSense 10 AutoSet (for Her, if possible), as I've noticed that the SleepStyle doesn't show or flag flow limitations, which, as I understand it, is essential for UARS. Since the guy I spoke to didn't have a clue about UARS and why the AutoSet for Her might be better suited to treat it, I would appreciate if someone could give me some pointers on what I should tell him, i.e., which features make it better.
After that, or alternatively, if you think I could continue with the SleepStyle, I would be eternally grateful for some help getting my settings dialed in, as I'm having a hard time with all the technicalities. Unfortunately, the pulmonologist I saw probably won't be of much help, as his report basically just recommended APAP at 4 to 20, which even the supplier thought was a bit weird, so I'm reluctant to ask him for more advice.
Lastly, please note that I'm from Europe, so I might not have the same options available as in the US or elsewhere and our medicine is way behind in certain areas. Even getting a PSG was a pain in the posterior, as I think there's only one clinic that does them here, so I had to go to a neighbouring country to get it done. But I'd nevertheless highly appreciate any and all advice and I'll try to figure out my local options where possible.
