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cps22 - Therapy Thread - cps22 - 10-15-2023
Would appreciate feedback on my OSCAR data and treatment, thanks.
I've been on CPAP for 2 weeks. I was diagnosed with moderate OSA but I am not convinced that's my problem, or if it is, that it's only if I sleep on my back (which I don't), but I was forced to sleep that way for the sleep study. I believe my real issue is a low respiration rate (it's been averaging 10.5 since the beginning of the year) and low sleeping Sp02. I was referred to a sleep specialist in June because of extreme fatigue, but that appears to have been caused by a B12 deficiency, since by the time I got the CPAP, my B12 was normal and my fatigue was mostly gone.
Other than the first couple of nights and one other night where I barely slept and had a lot of sleep-wake junk, my AHIs have been very low and all CAs.
Overnight Oximetry test: https://www.dropbox.com/scl/fi/7hin5qwb52pq9d7alzml0/overnight-oximetry-study-2023-06_redacted.pdf?rlkey=l0awp7m1abb7sv2jjj0680t51&dl=0
Sleep Study: https://www.dropbox.com/scl/fi/lzrj7x9an9r67cztlat1y/Sleep-Study-Redacted.pdf?rlkey=9n6wbpheggcmksyxl5dv47oqn&dl=0
I typically sleep both on my side and stomach, but not my back. I was having trouble with air filling my mouth and popping out (not mouth breathing) when on my side (using AirFit P30i mask), which kept me awake. Sleeping on my stomach for an entire night, my AHI was 0.79, all CAs. (see attached file for night of 10/13/23)
Yesterday I got a Philips Dreamwear FFM to see if I could resolve the mouth popping issue. I slept on my side most of the night, and while it did take care of the mouth/air issue, I had a lot of trouble with mask leaks. Even so, my AHI was 2.13. 1.8 CA, .11 UA, .22 H, and a new one for me - .22 RERA. I took off the mask halfway through the night and readjusted it, which helped a bit. (see attached files for night of 10/14/23)
Some questions -
I believe that when I sleep on my back, my jaw may drop back, causing the OA events that were seen in the sleep study. But if I never sleep that way, does it even matter? There were no OAs except while supine, but I had CAs in all positions.
Is there a way to determine whether a person would be having OA events but they're controlled by the CPAP, vs. that they wouldn't be having them at all?
I'm afraid my doctor will just say "great job - the CPAP is controlling your OSA", when the REAL problem is my low respiration rate and O2 levels that are being ignored.
RE: cps22 - Therapy Thread - gainerfull - 10-16-2023
Thanks for providing a ton of information in one post, well done. First and foremost, sorry you had to go through such a wretched night in the sleep lab! That must have been brutal! Being diagnosed with obstructive sleep apnea / sleep disordered breathing can be overwhelming and confusing considering for 65 years you have no recollection of having anything happen while you are asleep. That being said, the first thing I'd recommend you work on is mindset because if you read the sleep study and look at your OSCAR data it is clear as day that you will benefit quite a bit from cpap therapy. There's a reason why you put yourself through these tests and I'm guessing it's daytime sleepiness, insomnia, foggy mind / memory loss etc. If you'd like some proof, just look at your flow limit data - all of those little bars are the cpap machine measuring to what degree your airway is closing throughout the night.
If you feel like your pulmonologist / sleep doctor is not answering the questions you have, it's time to search for a new one that will listen to you and address the questions that are important to you.
To answer your questions:
1. How do you know you never sleep on your back? The reason they ask you to sleep on your back in a sleep study is because OSA symptoms are the worst on your back so they want to be able to provide therapy for the worst case scenario even if it's rare.
2. Yes, look at your flow limit data - your airway is attempting to close on you essentially the entire night otherwise you'd have no or infrequent flow limits. Flow limits are smaller forms of hypopneas and obstructive events.
Have you addressed your periodic limb movements / restless leg syndrome that was recorded in your sleep study? These can also cause arousals and fragment your sleep.
Also, have you considered using a simpler full face mask like the resmed f10 / f20? Personally I've never been a fan of the hybrid masks and had a hard time controlling leaks.
How did you feel the next morning after sleeping with your cpap?
RE: cps22 - Therapy Thread - cps22 - 10-16-2023
(10-16-2023, 10:19 AM)gainerfull Wrote: 1. How do you know you never sleep on your back?Thanks so much for your response.
Obviously I can't know for sure, but I have chronic tailbone pain and it is extremely uncomfortable for me to lie on my back. I've never woken up in a position other than the one I was aware I fell asleep in.
Quote:Have you addressed your periodic limb movements / restless leg syndrome that was recorded in your sleep study?
No, that is something I will discuss next time. However, I had a cortisone shot in my knee in April which apparently affected the nerve going from the knee to the foot. I had months of foot spasms after that, which have since calmed down. But I am also prone to getting foot spasms anyway. Taking some potassium before going to bed seems to help prevent that. (I've discussed that with my PCP before, but she thinks it's just coincidence (or psychological). There is a chance that I have a rare neurological disorder that would affect my legs, but unfortunately not one that can be tested for other than observation of symptoms. I had an EMG after the cortisone shot incident, and the doctor (who has some patients with that disorder) did not see any indications of that in my EMG.
I have not tried one of the other FFMs. I tried an N20 and although it was comfortable, the hose coming from the nose/mouth area drove me nuts - both from wrangling the hose whenever I changed position, as well as from the air shooting out from the vent (either on my pillow, on my arm, or on my spouse). That's why I tried the hybrid instead, as I don't have a problem with the top-mounted hose. But my experience last night was awful. Even though I had fewer leaks, my mouth kept filling with air and puffing out my cheeks. Opening my lips did not allow the air to escape, and neither did moving my tongue to open the airway so that I was totally mouth-breathing. The only way to resolve it was by intentionally sucking in my cheeks. After numerous episodes of that, I gave up trying to sleep on my side and just slept on my stomach where that doesn't happen. But if I have to sleep on my stomach, there's no need for the FFM since I can sleep well that way with the P30i which is far more comfortable.
The morning after my sleep study, I felt bloody awful. But then, I only had about 4 hours of sleep and had been extremely agitated, so that's not exactly surprising. In the 2 weeks since I've had the CPAP, I've ranged from feeling horrible (when I haven't gotten much sleep) to feeling about the same as I did without it (when I've had a "good" night), which means not feeling greatly alert and raring to go, but not really tired either. I do not feel any better now than I did before I got the CPAP - but my daytime fatigue was already pretty much gone by the time I started on it, as I mentioned above. If there has been a very slight improvement, I've no way of knowing whether it's from the CPAP or from continuing to recover from the B12 deficiency.
RE: cps22 - Therapy Thread - gainerfull - 10-16-2023
Thanks for the explanations - although your cpap / bilevel titration was short lived it does show us that you didn't have obstructive events even at low pressures.
Overall, it seems like CPAP @ 8cmH20 works pretty well for you all things considered. Considering you had central apnea prior to cpap you're not going to solve them with a cpap / apap. One thing you can do on a more advanced device like the resmed aircurve 10 vauto is control trigger sensitivity via "high" or "very high" settings which should eliminate central apneas given they are so infrequent.
I'm hesitant to recommend any changes to your therapy because you're new to it and your AHI is low already. If after consulting with your physician and continuing to use CPAP over the next two weeks you don't feel any better then perhaps you're due for some experimentation.
RE: cps22 - Therapy Thread - cps22 - 10-16-2023
Thank you! I've also just gone ahead and ordered the Wellue O2ring so that I can have a little better picture of my O2 levels overnight than I get from the Apple Watch.
RE: cps22 - Therapy Thread - cps22 - 10-31-2023
Since I last posted, I got a cervical collar and have been using the O2ring. The cervical collar helps to mostly eliminate the "mouth pops" when I sleep on my side, but it's a bit uncomfortable to wear when I sleep on my stomach. Since I don't have the mouth pops when I sleep on my stomach, sometimes I just take off the collar when I turn over, and put it back on if I go back to my side. With the collar, I've been able to use the P30i nasal pillows instead of the DreamWear FFM. (The FFM was "OK" when sleeping on my side, but very uncomfortable when sleeping on my stomach and would sometimes leak - the nasal pillows are much easier for me to tolerate. I like the nasal cradle (N30i) even better, but it leaks too much when on my stomach.) So I feel the mask situation is probably as good as it's going to get.
The O2 ring showed a short drop into the 70's on the first couple of nights, but the rest of the night (and all subsequent nights) have been ok. I sent the data to my doctor who said those little drops were not abnormal. He did give me an overnight oximetry test just to be sure (haven't gotten the results back yet, but the O2ring data looked very good that night - will be interesting to see how it compares to the medical grade oximeter's results). So I guess my O2 levels aren't an issue, though I'm still a bit uneasy about my average respiration rate being only around 10.5.
I am still not sleeping well, which isn't necessarily the fault of the CPAP, it's just one more thing keeping me annoyed and awake. ;-D
My question for today is an odd one. I sleep with my mouth closed, but my jaws slightly open. Normally my tongue is against the roof of my mouth with the tip of my tongue behind or against my front teeth. Since I've been using the CPAP, it appears that when sleeping on my side the pressure (and gravity) are causing my tongue to slide between my upper and lower molars on the "downhill" side of my mouth. As a result, the right side of my tongue is extremely sore and is visibly irritated. Is there anything I can do about that? I happen to have an appointment with my dentist in a few weeks, so I can talk to him about it then, but I thought maybe this is something other people have dealt with.
RE: cps22 - Therapy Thread - cps22 - 12-13-2023
At 2 ½ months in, I’ve met the compliance test and had my visit with the doctor, and am still no better off, though I sleep so poorly using the CPAP that it might be that the lack of sleep is overriding the benefit I’m getting from the therapy.
My doctor was sympathetic but said that since my sleep study said I had moderate OSA, he can’t tell me to just stop using CPAP (not that I’d asked him to). He was a little reluctant to change the pressure to try to reduce my flow limits since it’s set where the sleep study titration indicated was the best (8cm H20) and didn’t want me to chase “numbers” at the expense of comfort – he’s more concerned about my O2 levels than flow limits. But he was willing to set it to 9 for two weeks and have me send him O2 data. Unfortunately, my mask was so painful with the higher pressure that I had to change it back after 4 nights. Not only did it hurt to wear, but I was waking up with pressure sores on my upper lip and the skin around my mouth that was within the mask cushion was whitish. Loosening the straps even a little just caused large leaks. The increased pressure didn’t really make any difference to my flow limits anyway.
So at this point I’m wondering if I can use my AirSense 11 to do a bit of experimenting to find out how bad my OSA really is when I’m in my own bed and sleeping as I do normally (side and stomach sleeping), rather than in a lab where I was forced to sleep mostly on my back.
Can someone suggest settings that I might try? I have EPR off, as having it on even at 1 increased my CAs.
I’m not giving up on using the CPAP yet – I just ordered yet another mask (F20) to see if it works better for me, but it would certainly be useful to see whether I’m more in the “mild” or “moderate” category.
I’m attaching charts from December 9th, which was one of my better recent nights for sleep, though I had a bunch of mask leaks. I’ve since gotten the leaks under control, but don’t have charts because I had a problem with the machine not writing data to the SD Card (which I finally resolved by unplugging the machine and plugging it back in.) I also added a shot of my sleep data for that night just for giggles.
RE: cps22 - Therapy Thread - cps22 - 12-26-2023
Since I got the F20 mask, I've been sleeping a little better - it's so quiet that the noise doesn't bother me, and overall I have fewer issues with leaks. But I still feel so tired.
Please give me some suggestions for anything I might try changing.
Should I try increasing my pressure a bit to try to reduce the flow limits more? Or change the PAP mode from fixed to APAP, and if so, to what settings?
My average respiration rate over the last couple of days has slightly improved from my average of about 10.5, but it's still below 12 (11.8 from last night is the highest I've had). My inspiration time is always over 3.
According to my Apple watch, I was in deep sleep from about 23:17 to 0:00 and REM from 12:18-12:38, 4:30-4:58, and 6:20-6:39.
I'm attaching last night's data - the main and some of the advanced charts, as well as a snip from when I was in deep sleep. I didn't include pressure since that is fixed at 8cm.
RE: cps22 - Therapy Thread - PeaceLoveAndPizza - 12-26-2023
If you want to stay on fixed pressure, I suggest trying it set to 9 cmH2O with EPR 1 full-time. The flow limitations want to drive up pressure, but a bit of EPR may be enough to balance them out.
If you are open to other ideas, try setting your machine to APAP mode, pressure range 8-12 EPR 1 (or 2) full-time. I wonder how high it wants to drive the pressure, so a test would answer that question.
Either way, fixed or variable pressure, we are here to help.
RE: cps22 - Therapy Thread - cps22 - 12-26-2023
Thank you - I will change the settings to AutoSet using the numbers you suggested. Interested to see how things go tonight!