Suspect UARS, but sleep study showed 0 RERAs?

Hi all,

First time post here. I'm new to UARS—in fact, not even sure I have it—and am hoping gather some insights from those who've been around this block before.

I'm a 47-year old male, 150 lbs, 5'11", in good physical shape.

I tic many of the usual boxes for UARS symptoms:
• Wake up tired/unrefreshed
• Insomnia
• Occasional snoring/gasping
• Frequent awakenings to use bathroom
• Teeth grinding (cracked teeth)
• Brain fog/poor memory
• Anxiety
• Cold feet/hands
• Headaches[/list]

And I seem to check many of the risk factor boxes:
• Thin build
• Deviated septum
• Smaller, slightly recessed jaw
• Overcrowded teeth
• Orthodontics as kid
• Extracted wisdom teeth

The symptoms have been with me for many years—probably 10-20. Over the past 3 years, the sympathetic nervous system became very activated (fight/flight), and insomnia became my biggest challenge. I thought poor sleep was the symptom of anxiety, but I had a paradigm shift and now think poor sleep might be what's triggering the anxiety and other symptoms.

With this shift in perspective, I had an in-lab sleep study performed. The results are attached. I knew I didn't have sleep apnea, but was surprised that it didn't show any RERAs (absolute 0, or N/A on the interpretation). Is it possible to have absolutely zero RERAs (especially with "frequent spontaneous arousals")? The doctor didn't seem to have a whole lot of experience with UARS and wanted to steer the conversation away from that. I wonder if there was an error with sensors during the study, or maybe even mis-interpretation of the results? I don't know what I'd be looking for, but I'm tempted to request the raw data used to interpret RERAs. What specifically would I need to ask for?

I also saw an ENT doc a few weeks ago and he observed slightly enlarged turbinates and soft palette. He too wasn't very versed in UARS so he didn't have an opinion one way or the other regarding a diagnosis.

I understand that UARS is often missed in diagnosis. So, ahead of receiving the sleep study results, I was able to get a hold of a ResMed AirCurve 10 VAuto BiPAP. My thinking was that, regardless of what the test said, I would do diagnostic therapy with the BiPAP. If it helps, then I know what the problem is. If it doesn't help, well, I'm just out the cost of the machine. I mentioned this approach to the doctor and, surprisingly, he was on-board. So, while I didn't need the Rx, I now have it and am "on the grid". The prescribed setting was 5-20, with everything else set to default. I did change PS to 4.4 as 5 seemed to overfill my lungs. Also, I changed Cycle to High for the same reason.

It's only been a few days and I've wrestled with different masks and sizes trying to find the best fit. I really don't yet have any data to share as I've only had maybe a couple hours of sleep with it on. It's been very challenging adapting to it. I'm planning to start using OSCAR once I have some data.

Thanks for hanging in to the end of this long post. My biggest question is this: Am I wise to continue to suspect UARS and do BiPAP therapy? Or do I accept the sleep study results and move on?

Thanks for your time.

How long have you been on the 2 prescription meds??
mirtazapine and clonezapem
How long on the melatonin?

One thing on the report didn't make much sense...
"longest respiratory event lasted 49 seconds and the average event lasted 56 seconds" huh??? That doesn't compute math wise.

It is doubtful that you have UARS without the usually seen RERAs. Everything I have ever read about UARS says that RERAs are needed to establish a diagnosis. They sort of go hand in hand.

It doesn't hurt to try the AirCurve 10 but you need to understand that its algorithm isn't going to do a thing for UARS (if you even have some level of UARS) because that's not what the auto adjusting algorithm or event flagging is designed for.
Your reports will be very boring unless they show a lot of awake/arousal related flagged events.
Remember the machine doesn't know if you are awake or asleep.

So the machine is unlikely to do much at all in terms of adjusting the pressure because you probably don't/won't have much going on that will trigger pressure responses.
So reviewing the reports probably isn't going to be all that helpful.
What you will have to do is look closely at your subjective feelings and probably keep a very detailed log...and do a lot of experiments at various pressures to see if anything helps or not.

It's a long complicated process even when UARS is documented.
Doesn't hurt to try though but just be aware it's not going to be a quick easy fix....if it even fixes anything.
Historically when we have seen documented UARS patients here using apap....they end up having to use substantially more pressure to resolve symptoms than the machine wanted to give.
Most recent case that I remember was the person when using apap the machine never ever went over 8 cm....but she ended up needing 13 cm (per a titration sleep study done with the Pes device) to resolve her symptoms.
And this person had documented UARS from a sleep study done with the Pes device to start with.

Thanks for your reply, Pugsy.

Been on all of those meds for about 2.5 years.

Regarding the RERAs, is it unusual to have zip, zilch, none? That struck me as being suspect as I would think that it's a sliding scale. Which is why I am wondering if there was an error. Do you think I should request the raw data used to establish RERAs?

I don't see what having the raw data available is going to accomplish because you won't know how to interpret it.
I don't know anyone here with that sort of knowledge or abilities. How do you know what to look for in the raw data????

RERA is just an arousal after some sort of respiratory related event of some sort. That's all it is.

There are 2 kinds of arousals...those related to airway issues of some sort and
spontaneous which means it could be a gazillion causes that we don't know why except we know that the airway issue WAS NOT a cause.

The fact that you didn't have any RERAs...doesn't really mean much. I didn't either and my OSA is classified as severe.
There is a certain set of criteria needed to earn the RERA flag....not sure exactly what it is (so don't ask but I know all this stuff has certain criteria).
You did have RDI of 2...that's respiratory disturbance index...not sure why no RERAs but you had a 2 per hour average of some sort of respiratory disturbance. Again the math just doesn't seem to add up but dictation errors are made sometimes.
Why do they mention RDI of 2 and zero RERAs?....question for the doctor I would think.

You have a machine...and the treatment of choice for airway issues like UARS is cpap.
Why not just give it a go and see what happens??? You already bought the machine. If it doesn't work out you can always sell it. You just have to be more aggressive with your own input because the machine isn't going to want to fight much unless you have a lot of flow limitations going on...and those can potentially disturb sleep.

You have arousals, but none of them were related to respiratory effort. Also, none of your periodic limb movements were related to arousals. To answer one of your questions, I don't see any point at all in asking for raw data.

You have a lot of sleep problems, and to me it makes sense to do what you can to understand their source and potential resolution. While I am skeptical about the likely results, i think using the VAuto is a reasonable and no-risk experiment. (The main hope would be that pressure support resolved flow limitations, which in turn were causing disruption of your sleep architecture. But you may not have significant FLs, and if you do they may not play a role in your sleep problems.) Please do post charts as soon as you have some sleep time with the machine. Be sure to include your snore and flow limitation graphs.

But I hope you will also give thought to other sources of your sleep problems, and other avenues for resolving them. You may need to address multiple issues; there may not be a single problem. Pugsy has asked about the drugs you are taking. Another question: how well are you doing with the guidelines for better sleep:

• 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.

Also, try reading up on Cognitive Behavioral Therapy for insomnia (CBTi). Apparently it can be quite helpful to some people with insomnia and fragmented sleep.

I hear you. I'm planning to give the machine a full fledged try.

What do you mean by being more aggressive with my own input?

Pugsy wrote: ↑

Thu Dec 02, 2021 1:12 pm

You have a machine...and the treatment of choice for airway issues like UARS is cpap.
Why not just give it a go and see what happens??? You already bought the machine. If it doesn't work out you can always sell it. You just have to be more aggressive with your own input because the machine isn't going to want to fight much unless you have a lot of flow limitations going on...and those can potentially disturb sleep.

Acinomer wrote: ↑

Thu Dec 02, 2021 3:04 pm

What do you mean by being more aggressive with my own input?

Not afraid to try higher pressures.
Be willing to listen to your body more and not rely on the data provided to answer all your questions.
Be willing to take a hard look at your sleep habits in general.

We also probably should talk about medication side effects as a factor as well.
I know you probably had the unwanted symptoms prior to starting on the meds but they can be clouding whatever results you might get with the machine.
Did you know that even melatonin has insomnia listed as a potential side effect?
Most mood meds have some really nasty side effects and can make unwanted symptoms worse...especially fatigue and/or drowsiness.
Some mood meds even mess with the sleep cycles so that people can't get the deep sleep stage or REM sleep stage in the needed amounts for the restorative powers of sleep to work their magic.
I don't know right off hand if the 2 mood meds you take affect sleep stages themselves and don't have the time right now to do the needed research...but we can do that later.

One thing you are going to need to get....a big bottle of patience pills because you are going to need a lot of patience.
This isn't going to be quick and easy...or at least that is what my crystal ball says.

First thing is getting you used to the machine and the mask and all that stuff because to stand any chance of figuring all this out and maybe happen to help ....you gotta get the sleep first.

Ideally...I would like to have all meds removed from the equation but that's between you and your doctor and for sure no cold turkey withdrawal should be attempted. That's going to mess with sleep itself.
For now leave the meds alone.

Sleep itself is your primary goal. Worrying about settings and tweaking and such....later.

Oh...whatever you do...don't go over 5 PS until we actually see some reports and talk about it.
Sometimes PS itself can cause problems in a very small subset of cpap users. No way to know if you are one of those people without simply using the machine. Chances are slim...but there is a chance so we want to be cautious. Don't want to create even more sleep issues trying to fix this sleep issue.

Oh...I know you want to put a name to your problem and have a face to your problem but just because you may not have UARS or OSA doesn't mean that there isn't a chance you couldn't have some other sleep disordered breathing problem that the machine could help.

I am short on time but will have more thoughts later. Your education is just beginning.
And also take the time to watch the videos here...you are going to need to learn how to differentiate between asleep breathing and arousal/awake breathing.
http://freecpapadvice.com/sleepyhead-free-software