Buying Bipap for UARS & self titration

Hi,
I did a sleep lab test and got AHI=2.9 and RDI=12.9
In total I had 1 obstructive apnea, 22 hypopneas and 91 RERAs. I spent 8 hours in bed, but only slept for ~4 hours.
First, I think that the AHI and RDI numbers are underestimated, because it seems that they simply divided 23/(roughly 8 hours in bed) to get the AHI when they should have done 23/(roughly 4 hours of total sleep). Same with RDI. Am I correct about this? If this was the case my AHI would actually be ~5.7 and RDI ~28 which seems much worse than the number given to me by the doctor.

I got this report over email and had a phone call with the pulmonologist at the sleep lab. They basically told me that the results show I don't have sleep apnea and that my sleep problems might be due to stress. When I asked about the high RDI they evaded the question a bit saying something that it is hard to say why it is so, but reiterated that I don't have sleep apnea and that I should try to reduce stress in my life and see if that improves the sleep quality.

I have an in person appointment in a couple of weeks, but judging by our conversation over the phone, it seems like they won't be willing to recommend and titrate a CPAP/BiPAP machine since they are just looking at AHI which is mostly ok.

The high RDI seems to me like it would indicate UARS and I saw that some people had success treating it with a BiPAP machine.
I'm considering buying it out of pocket and titrating the pressure myself. I'm not concerned about the financial cost, but I'm a bit concerned if I'll be able to properly titrate it.
Is this something you would recommend?

Also, I tried using an oral appliance in the past that kept my mandible forward which helped initially but stopped helping after a couple of years, and it also moved my teeth and messed up my bite. I'm 32 years old, male and relatively thin (bmi=23). My CBCT scan shows some nasal congestion and a very large tongue with a very small amount of retropalatal space (only 3mm).

I attached the results of the sleep study.

btrslp wrote: ↑

Mon Dec 27, 2021 8:22 am

Hi,

welcome to the zoo!

seems like forum folk had a bit of a sleep in monday morning and missed your post. sorry about that. i don't have the answers to your questions. but i'm responding so that your post will appear higher on the list. my hope is that some knowledgeable will come by and provide some info for you.

good luck!

Let me add my welcome to Zonker's.

People do have success self-titrating on a self-funded machine, so that is not a wild idea. If you decide to do that, I'd recommend that you purchase a ResMed VAuto Aircurve, which will give you more bi-level capacity than the Airsense 10 Autoset. Bi-level pressure can be helpful for people who have UARS.

When you have your in-person appointment, do ask about the periodic limb movements. That condition can sometimes be treated successfully with drugs, and treatment might be a part of what would help you get better sleep.

As for UARS, it is difficult to diagnose, and for a fair number of people, I think the way it is confirmed is via successful treatment on a bi-level machine. The reluctance of your sleep clinic to pursue this is pretty common, I think.

One caution: if the underlying reason for your RERAs is your tongue, a PAP machine may not help you much, since it can't compress your tongue, as far as I know. Then again, maybe it would compress the tissues lining your pharynx enough to make a difference. You might want to talk about this with the sleep doctor.

Finally, even if you pursue the bi-level route, the advice to reduce stress in your life is good advice, likewise the advice to follow these guidelines, which I'm sure you've seen:

• Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
• Set a bedtime that is early enough for you to get at least 7 hours of sleep.
• Don’t go to bed unless you are sleepy.
• If you don’t fall asleep after 20 minutes, get out of bed.
• Establish a relaxing bedtime routine.
• Use your bed only for sleep and sex.
• Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
• Limit exposure to bright light in the evenings.
• Turn off electronic devices at least 30 minutes before bedtime.
• Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
• Exercise regularly and maintain a healthy diet.
• Avoid consuming caffeine in the late afternoon or evening.
• Avoid consuming alcohol before bedtime.
• Reduce your fluid intake before bedtime.

Thank you for the quick replies!

Regarding the sleep hygiene, I'm doing all of that for many years already, but none of it seems to have a significant effect on my sleep. I do sleep a bit better at home than the sleep study would reveal (i.e. it doesn't usually take me a couple of hours to fall asleep like in the sleep study, I think that was mostly because it is so uncomfortable to sleep with all of the equipment and in a strange environment).
I'll ask the doctor about the PLM. Although subjectively, when I would wake up during the night, it "felt" as it is due to breathing rather than leg movement, e.g. I would sometimes kind of hear a single snore that wakes me up. I usually don't snore but when I tried recording myself with a SnoreLab app, I would hear a couple of instances where I would snore 2-3 times and then wake up or move in bed.

I noticed you said xPAP might not work if the large tongue is the primary obstruction. Is that the experience of others on this forum as well? If indeed PAP won't be useful in this case, what are the other options I could try (I used a custom made oral device to keep my lower jaw forward, but it ended up moving my teeth and giving me an open bite after a couple of years)? Does anyone have experience with being told their snoring/UARS/OSA is because of a large tongue? How did you treat it?

I'm attaching a CBCT that shows the narrowed airway behind the tongue and soft palate. The tongue fills the whole oral cavity and the soft palate seems to be pushed back because of the tongue. I breathe exclusively through my nose.

BTW this forum is great. I feel like I've learned much more from a few hours of reading it than in any doctor's appointment.

About the tongue: there is surgery to reduce the size of a very large tongue, as well as a radiofrequency procedure. My general memory is that we've heard from people who benefited from both procedures and from those who didn't. A good topic for your doctor.

Ah, I was hoping there were non-surgical options.

Also, do you know the answer to the ahi and rdi calculation? Should the denominator be the time spent in bed or the time actually sleeping? The former seems what my sleep lab is using but it seems wrong to me because I could cut it in half by just staying awake for a few hours in the morning...

btrslp wrote: ↑

Wed Dec 29, 2021 11:00 am

Ah, I was hoping there were non-surgical options.

Also, do you know the answer to the ahi and rdi calculation? Should the denominator be the time spent in bed or the time actually sleeping? The former seems what my sleep lab is using but it seems wrong to me because I could cut it in half by just staying awake for a few hours in the morning...

Only the time actually asleep counts.

The denominator should most certainly be time asleep. Yet another thing to take up with the doctor!