New Oscar user and looking for advice

[PlaidFrog]

Hey everyone,

This forum is amazing and I'm learning so much lurking, but I'd love to get some specific feedback on my situation.

I'm 38M, have always been told my tall/slender body type is less typical of CPAP users, but since college have always felt tired and fogged. I had my sleep study 11 years ago and CPAP ever since, which only indicated mild apnea (AHI of ~7) and the CPAP has brought it down to 1-2 AHI. Every annual sleep appointment since, they seem to basically look at the one-page summary report from my CPAP, ask me a few general sleep questions, praise me for my 100% compliance, and tell me that since the machine is bringing it down that the therapy is working and keep on as is. I still regularly wake up feeling tired (despite maintaining 7-8 hours of sleep daily), never refreshed, and often fogged and lacking motivation during the day. I get up to use the bathroom once per night (feels like a weird thing to mention, but I'm aware it is relevant and this seems like the best spot for it!).

Discovering this board inspired me to try Oscar and look at my data, but quite frankly, I'm a little overwhelmed at this point with the data and am hoping for some impressions, as I don't think my doctor has ever looked at the data like this. I realize I have a mild case so maybe everything really is just fine, but if there's potential for improvement in how I feel, yes please!

I've also been dealing with intermittent but regular pain in my face for the past year (side of face/teeth/through to the ear). I've talked to my dentist (many times), doctor, ENT, even had an MRI to rule tons of stuff out. My dentist thinks I'm grinding in my sleep, and it is due to sleep issues. He gave me a mouthguard, which is causing bad jaw pain and a weird bite and headaches in the morning. I've been back to the dentist many times for adjustments, and he insists it is now fitted properly and that the bite changes aren't directly caused by the mouthguard. The main theory is that due to my physiology, I may have a narrow airway and need more airflow, and I'm unconsciously putting my jaw in an awkward position (especially with the mouthguard in) to get more airflow.

Other conditions: I had my adenoids out as a teenager. I had major trouble breathing through my nose before that. The surgeon mentioned afterwards that my tonsils were big too. No doctor has complained about the size of them since, though I do get annoying tonsil stones occasionally. I also have psoriasis and psoriatic arthritis, which is managed fairly well with Tremfya. My BP has also been borderline (top number 120-140s) for years before and after CPAP.

My pressure is set at what I understand is the default 5-20 (and has never been any different). At my last sleep appointment, I was hoping maybe we'd try something different. I wonder about UARS considering my low AHI and physical profile and potential grinding, but Oscar isn't reporting many RERAs. Due to the jaw comments at the sleep appt, I was instead referred to a sleep/TMJ-specialized dentist, and won't be able to get in for at least a month. So what I'm wondering is:
 - Looking at my data, is there likely room for improvement by adjusting settings? Should I try changing it myself despite provider not having any interest in adjusting what they already see as successful therapy? Or am I overreacting and things are fine?
 - The brochure I was given for the sleep/TMJ dentist is all about sleep appliances for those that can't tolerate CPAP. After years of being told CPAP is the gold-standard for apnea, this makes me a bit nervous to potentially try something other than CPAP, when the issue isn't that I can't tolerate the machine. Am I right to be wary?

Thank you in advance to anyone that has taken some of their precious time to read this!

[Deborah K.]

Your beginning pressure is too low for most adults.  I suggest you raise it to 7.  I also suggest turning EPR on full time, set at 3.  This will make your breathing more comfortable and will lower your flow limits, always a good thing to do.

Again, welcome, and good luck with improving your therapy and comfort!  

[DaveSkvn]

Hi PlaidFrog,

Your situation sounds very familiar. I've had daytime alertness issues from my 20s. BMI of 21ish. I've been on CPAP for years and only just (last week) found OSCAR to see what was on the SD card that no-one has looked at for years. I still have poor alertness / focus even with CPAP. On waking it takes half an hour to get to the stage where I can wash my face (things do pick up then). My dentist was complaining about teeth grinding in sleep a few years before I was diagnosed. I had my tonsils out when I was six.  

As you say, on the surface your plots look fine. The AHI is low but if you started at AHI ~7 then ~2 doesn't seem that great an improvement. I doubt a pressure of 5 is going to stave off many events itself and by the time the machine has detected and reacted to an event the arousal may have happened. As indicated by Deborah, its worth raising the base pressure so that events are inherently managed without the need to detect and react. I suspect your top pressure of 20 would be intolerable but you don't go anywhere near it so its not much of an issue. My first auto machine as set to max of 16 and I would often wake with a gale in my face and air being pumped into my stomach.

You ask about adjusting your settings and the reaction of your provider. I've been with 3 sleep clinics over the years in different locations. Once you are using the machine the required number of hours and have AHI < 5 they see it that they have done their job / can't be sued. My current clinic is of the view that 20% of CPAP users don't get full relief from symptoms (that's us two) and there is not a lot they can do about it. And they may be right. If you keep using the machine the required number of hours and the AHI is low, I doubt they will show much interest in you playing with values.

I take it you are heading towards a Mandibular Advancement Device. When I moved to the second sleep clinic and I said I didn't have full relief from symptoms on CPAP they looked at various options. I ended up getting a MAD made (by a hospital orthodontist). I had an initial visit and then returned to get the device made. When the impressions were being taken the dentist said "now push your jaw forward". I said "it is forward!". They said "all the way forward?". I said "yes". They said "Oh". The key to a MAD's effectiveness is how far your jaw can travel forward (its a pity they hadn't checked on the initial visit). If you cannot stick your jaw very far forward, a MAD is not going to make much difference to the airway. And so it proved for me. In the UK I believe a MAD is the first line treatment for AHI between 5 and 15. CPAP, given the expense and discomfort, is more for AHI > 15 where a MAD is unlikely to make enough of a difference. You can use a MAD and CPAP at the same time but I wish you the best of luck trying to get to sleep.

You mention UARS. Its something I'm looking at for myself since I can see my data through Oscar. I have significantly more "flow limitations" compared to you and it coincides with rapid shallow breathing (respiratory rate up to 50, tidal volume dropping). I see something happened to you about 01:15. Some flow limitations were detected, your tidal volume became jumpy. I suspect your breathing rate would become unstable about then too but we can't see. Your mask started to leak. It might be worth tightening up on the mask to try and stop those leaks - easier said than done with pain in that area.

Best of luck in your search for a solution and if you find it let me know...