UARS but normal AHI RDI but Many spontaneous arousals

My story on my OSAS & CPAP journey is a bit long and it's full of frustration. until now , i still don't know why cpap fails to help me.
you can jump to the questions in the last part if you don't have time to read through the whole passage.


I was diagnosed with mild OSAS 10 years ago in my 20s. I am thin with ideal BMI. My sleep PSG study show AHI = 11, but spontaneous arousal is > 20 per hour. The DISE showed that I had collapse at multiple locations (at palate, tongue base and with a loose epiglottis that would fold together when I inhaled). My CPAP usage report was very good (AHI <5), but I still woke up very tired.

Later, my ENT doctor performed a UPPP and hyoid suspension to me. Unfortunately, the surgeries seemed to help nothing. I still woke up with tiredness, even with CPAP.
In the next year, I saw another doctor and he said CPAP compliance issue might be due to my congested nose. He later performed a inferior turbinoplasty to me. But the outcome was also insignificant.

For years I have been struggling in different kinds of therapy to help me sleep better such as dental appliances, or the Provert therapy but none of them are consistently effective on consistent improvement on my sleep.

My recent sleep study performed in Feb-2018 shows that my AHI =3.7 , RDI = 5.2, but arousal index = 24 , while 85% of all arousal are spontaneous arousal.
My doctor cannot explain what causes the spontaneous arousal. He said if any respiratory related arousal can be reported in RERA so my problem is not related to respiratory. He has refereed me to a psychiatrist.


Questions:

1. Is it common to see UARS patients with very normal AHI, RDI , RERA, SPO2, but many spontaneous arousal in their non-cpap Sleep PSG result ??

2. I read some articles saying that floppy epiglottis could possibly cause intolerance of CPAP. Could this problem be indicated by the CPAP report ? I wonder if the cpap machine would report a very bad AHI.

I wish some people had replied to this with good info. I’m in the same situation, but I didn’t have UPPP. I had double jaw surgery in 2021. I’ve used CPAP, Bipap, VAuto, ASV, a range of different pressures on each machine, mouth tape, cervical collar, chin strap, etc. and nothing has worked to get even an okay night of sleep.

I know I don’t have insomnia. I fall asleep easily every night. My issue has to do with breathing. I wake up and fall back asleep immediately over and over every night. I’ve recorded myself and I can hear myself snoring lightly every night. It feels like no one can help me.

Have you had any improvement?

Jtg073 wrote: ↑

Fri Apr 26, 2024 1:56 pm

I wish some people had replied to this with good info.

This question has been answered dozens of times.

The problem is people don't like the answer.

Which is:

You can't fix bad sleep with a CPAP machine.

Rubicon wrote: ↑

Sat Apr 27, 2024 6:44 am

Jtg073 wrote: ↑

Fri Apr 26, 2024 1:56 pm

I wish some people had replied to this with good info.

This question has been answered dozens of times.

The problem is people don't like the answer.

Which is:

You can't fix bad sleep with a CPAP machine.

What....the machine can't fix all the world's problems including delivering world peace???? Damn. I was told it would.

They also don't want to admit that there might be some sort of insomnia going on because insomnia is a dirty word.
"I don't have insomnia....I fall asleep just fine....I just can't stay asleep and I wake up repeatedly during the night"
Yeah...sticking their head in the sand because it's much easier to deny than to work on figuring out the cause and fixing it.

People don't want to admit that the sleep maintenance insomnia monster has set up residence in their body.
Instead they want to blame UARS or "cpap not working" or whatever because they want a quick fix instead of doing to work to try to fix the problem.......and people....trust me....I personally know exactly how difficult sleep maintenance insomnia is to identify the cause and THEN maybe try to fix it.

Contrary to what people want to believe.....not all bad sleep is because of airway issues of some sort but yet they want cpap to fix all those unrelated issues and when it can't (because it doesn't do miracles) it's the machine's fault or the settings fault or whatever's fault.

Sleep maintenance insomnia.....the list of potential causes is a mile long and the machine can only fix one item on that long, long list. Most of the time IMHO people often have multiple causes and that makes an already difficult chore even harder.

Pugsy wrote: ↑

Sat Apr 27, 2024 7:18 am

People don't want to admit that the sleep maintenance insomnia monster has set up residence in their body.
Instead they want to blame UARS or "cpap not working" or whatever because they want a quick fix instead of doing to work to try to fix the problem.......and people....trust me....I personally know exactly how difficult sleep maintenance insomnia is to identify the cause and THEN maybe try to fix it.

Contrary to what people want to believe.....not all bad sleep is because of airway issues of some sort but yet they want cpap to fix all those unrelated issues and when it can't (because it doesn't do miracles) it's the machine's fault or the settings fault or whatever's fault.

Sleep maintenance insomnia.....the list of potential causes is a mile long and the machine can only fix one item on that long, long list. Most of the time IMHO people often have multiple causes and that makes an already difficult chore even harder.

I've been saying this for a long time...sleep apnea is not the only sleep problem folks can have.

I have never felt rested on CPAP. I wake up so much, usually able to go right back to sleep, but still that's fragmented sleep. Sleep doc has no idea why. I have very low AHI and fairly low RDI, so at least that's not a major cause, apparently. Anyway, continuing my search for better sleep. May be something I just can't do anything about and will have to live with things the way they are.

Pugsy wrote: ↑

Sat Apr 27, 2024 7:18 am

Rubicon wrote: ↑

Sat Apr 27, 2024 6:44 am

Jtg073 wrote: ↑

Fri Apr 26, 2024 1:56 pm

I wish some people had replied to this with good info.

This question has been answered dozens of times.

The problem is people don't like the answer.

Which is:

You can't fix bad sleep with a CPAP machine.

What....the machine can't fix all the world's problems including delivering world peace???? Damn. I was told it would.

They also don't want to admit that there might be some sort of insomnia going on because insomnia is a dirty word.
"I don't have insomnia....I fall asleep just fine....I just can't stay asleep and I wake up repeatedly during the night"
Yeah...sticking their head in the sand because it's much easier to deny than to work on figuring out the cause and fixing it.

People don't want to admit that the sleep maintenance insomnia monster has set up residence in their body.
Instead they want to blame UARS or "cpap not working" or whatever because they want a quick fix instead of doing to work to try to fix the problem.......and people....trust me....I personally know exactly how difficult sleep maintenance insomnia is to identify the cause and THEN maybe try to fix it.

Contrary to what people want to believe.....not all bad sleep is because of airway issues of some sort but yet they want cpap to fix all those unrelated issues and when it can't (because it doesn't do miracles) it's the machine's fault or the settings fault or whatever's fault.

Sleep maintenance insomnia.....the list of potential causes is a mile long and the machine can only fix one item on that long, long list. Most of the time IMHO people often have multiple causes and that makes an already difficult chore even harder.

I see that you’re looking at my past posts and quoting me, but you’re taking what I said out of context. I do fall asleep easily. I do wake up repeatedly throughout the night. But I don’t wake up and have trouble falling back asleep. I’m barely even conscious of the times I wake up and fall asleep again. It happens so quickly. I just have small glimpses of remembering waking up for a second. I’m not arguing that I don’t have something else wrong besides my breathing, but I can see on Oscar that I don’t have many regular breathing patterns. I do have apneas here and there, but most of it just looks like junk. It’s fragmented sleep with lots of spikes and jagged lines. I’ve recorded audio of myself sleeping with the SnoreRx app without my machine and I can hear myself snoring, then waking up and changing positions, falling asleep again, repeat.

I don’t know why some people here are so eager to tell people that they’re just imagining things and that their only problem is insomnia.

Jtg073 wrote: ↑

Sun Apr 28, 2024 1:15 pm

I don’t know why some people here are so eager to tell people that they’re just imagining things and that their only problem is insomnia.

So I'm reading your stuff--

Would it be fair to say that you have nighttime awakenings at least twice per week for more than 1 month that have moderate to severe impact on daily life, but not experiencing difficulty falling asleep?

Jtg073 wrote: ↑

Sun Apr 28, 2024 1:15 pm

I see that you’re looking at my past posts and quoting me,

Actually you are quite incorrect. I wasn't talking about you at all and in fact I didn't even go back and read any of your old posts.
I was talking to Rubicon (that's what it means when I quoted him) about some insomnia stuff in general because we see your same complaint so many times here.
I didn't quote you at all....so please don't go saying I did. When I quote someone....I quote them like I have here and if I had gone and looked at your old posts I would either have said so or I would have quoted a past comment you made.

Though I will say this.....if the shoe fits you might want to consider wearing it.
There is nothing in the criteria for having sleep maintenance insomnia that requires someone to have trouble falling back to sleep.
Sleep maintenance insomnia is just waking up earlier than wanted OR waking often during the night.
It does NOT require someone to have problems falling back to sleep (though often people will also have that problem).

I don't understand your reluctance to admit to that fact but it's your life and you get to think whatever you want.
You may not have sleep onset insomnia but you do have sleep maintenance insomnia....and they are 2 totally different beasts to deal with. Deny it all you want but it doesn't change anything.

Have a nice day.

Pugsy wrote: ↑

Sun Apr 28, 2024 1:55 pm

Jtg073 wrote: ↑

Sun Apr 28, 2024 1:15 pm

I see that you’re looking at my past posts and quoting me,

Actually you are quite incorrect. I wasn't talking about you at all and in fact I didn't even go back and read any of your old posts.
I was talking to Rubicon (that's what it means when I quoted him) about some insomnia stuff in general because we see your same complaint so many times here.
I didn't quote you at all....so please don't go saying I did. When I quote someone....I quote them like I have here and if I had gone and looked at your old posts I would either have said so or I would have quoted a past comment you made.

Though I will say this.....if the shoe fits you might want to consider wearing it.
There is nothing in the criteria for having sleep maintenance insomnia that requires someone to have trouble falling back to sleep.
Sleep maintenance insomnia is just waking up earlier than wanted OR waking often during the night.
It does NOT require someone to have problems falling back to sleep (though often people will also have that problem).

I don't understand your reluctance to admit to that fact but it's your life and you get to think whatever you want.
You may not have sleep onset insomnia but you do have sleep maintenance insomnia....and they are 2 totally different beasts to deal with. Deny it all you want but it doesn't change anything.

Have a nice day.

But why are you and other people who reply to me so reluctant to believe me when I say I have breathing problems when I’m sleeping? I can see it on Oscar. I even explained that in detail in my comment but you completely disregard it and immediately start telling me I just have insomnia.

Like I said, I’m willing to admit that my problem isn’t ONLY sleep disordered breathing, but I know that’s part of it. I’m just trying to get that part fixed.

Jtg073 wrote: ↑

Sun Apr 28, 2024 2:15 pm

... and other people ...

Welp, I guess that seals it.

I have now become one of the "other people".

It was good while it lasted.

Wait, what am I saying???

I became one of The Other People 7 years ago!!

I miss those 16 hour day/nights, calls in the middle of the night, assorted issues requiring getting blood out of a rock...

Yep, sure do miss it.

About as much as a session with The Pear of Anguish.

Jtg073 wrote: ↑

Sun Apr 28, 2024 2:15 pm

But why are you and other people who reply to me so reluctant to believe me when I say I have breathing problems when I’m sleeping? I can see it on Oscar. I even explained that in detail in my comment but you completely disregard it and immediately start telling me I just have insomnia.

I never said I didn't believe you when you said you had breathing problems.
And I don't see any reports documenting what you think is a problem.
If you posted it in the past....I don't recall seeing it or maybe I saw it but didn't have an answer for your question.

Why do you persist in putting words in my mouth and saying I said things when I didn't?????

If you are having respiratory problems or think you are....then you need to talk to a doctor about them.