UARS(upper airway restrictive syndrome) was making my CPAP use difficult

[Midwest]

I'm posting this just in case someone else might have this condition. It's supposed to be rather rare.

I got my CPAP about 3 months ago in August after being diagnosed with sleep apnea. At first things seemed fine. I was sleeping well. I even posted about it here on cpaptalk. Then for some reason it all changed. It literally got to the point where I just could not stay asleep at all. I was waking up constantly. My sleep was to the point where it was worse than ever. My AHI numbers were well below 5, but I was getting a ton of FRs (flow restrictions) and RERAs (respiratory events resulting in arousal). Such events don't show up in AHI, but they interrupt sleep like crazy. I thought I was going to go insane. Plus, it seemed like the pressure from the CPAP was becoming unbearable. For some reason the pressure that seemed fine at first was now feeling like it was very high and hurting my throat and nasal passages. I didn't want to stop using the CPAP, but it got to the point where I was considering stopping it altogether.

My doctor was out of town, so I went to a new doctor. He looked at my sleep study and told me my main problem was UARS, or upper airway restrictive syndrome. Apparently this showed up in my sleep study, but my first doctor didn't bother to even mention it to me. With this condition a person's airway shrinks but doesn't always close completely as it does in straight obstructive apnea. The way I understand it, it is like having a supper sensitive airway. Because the airway is super sensitive, you wake up because your subconscious mind feels your throat getting narrow and it shoots you with adrenaline. Unfortunately UARS can be more troublesome than straight obstructive apnea, and patients can't always get good results from CPAP alone. Plus, for some reason people with UARS can't take pressure on their airway very well. I was totally bummed at first, but this doctor understood and helped me.

Now, my therapy consists of a dental appliance device that holds my jaw forward while I sleep and a CPAP on low pressure. My new pressure range is 4 to 7. It was 9 to 14 when I started on the machine. Along with this I am losing weight and doing throat and tongue exercises (I never knew there were such exercises). Things are going good now and I'm sleeping much better, but for while there I was going insane from no sleep.

[slowriter]

I'm posting this just in case someone else might have this condition. It's supposed to be rather rare.

UARS comes up a fair bit here.

I suspect it's reasonably common, but under diagnosed.

[Miss Emerita]

Midwest, thank you very much for sharing your experience. You were so lucky to find a good sleep doctor on your second try. A lot of people just don't have that opportunity, and for them, learning about your experience might be especially helpful.

For other people reading this thread, I'll mention that I had a lot of flow limitations and very broken-up sleep. For me, switching to a VAuto and using pressure support (currently at 4.4) proved to be helpful. But I don't seem to have the airway sensitivity that you do.

[Midwest]

Midwest, thank you very much for sharing your experience. You were so lucky to find a good sleep doctor on your second try. A lot of people just don't have that opportunity, and for them, learning about your experience might be especially helpful.

For other people reading this thread, I'll mention that I had a lot of flow limitations and very broken-up sleep. For me, switching to a VAuto and using pressure support (currently at 4.4) proved to be helpful. But I don't seem to have the airway sensitivity that you do.

Thank you Miss Emerita,
Be thankful you don't have the sensitivity. That is the most nerve wrecking part of this condition for me. I can literally feel every tiny change in pressure from the APAP, and it drives me crazy. It's as if pressure irritates the airway, and the airway wants to close in spite of the pressure. That's why I must have it only on lower pressure. I notice your pressure is low and it helps you. Thanks again, and may you sleep well.

[chunkyfrog]

. . .
My doctor was out of town, so I went to a new doctor. . .

This saved my mother in law's LIFE.
Her regular doc was an incompetent boob,
but his associate diagnosed her sudden onset type 1 diabetes.

[tarheelalum]

I also have pretty severe flow limitations according to my data in oscar but my doctor doesn't seem to feel UARS is a big problem to worry about. I am also experiencing similar difficulties with my apap as you. But unfortunately a low AHI is all my doctor is interested in.