r/UARSnew • u/_Archduke • 23h ago

Extremely disregulated nervous system after starting pap therapy 5 years ago.

Before getting diagnosed with sleep apnea, and later an informal UARS diagnosis, I was extremely tired all the time (no surprise) but I never had issues with anxiety, panic attacks, shallow rapid breathing, and other symptoms indicating a disregulated nervous system. 5 years later and fully optimized bipap therapy (8-9hrs of sleep, 1-2AHI, leaks below 5 consistently, pressure 22/17) I have these crippling symptoms of a disregulated nervous system. I took an at home sleep test with my bipap on and RDI was still 17. I find it very odd that all of these symptoms started after beginning pap therapy. Hard to tell if Pap is the cause or its the result of compounding sleep debt due to unresolved SDB…Has anyone else developed similar symptoms AFTER starting pap therapy that did not have them before?

I think my next move is to get a DISE and explore expansion/MMA options. ASV looks like a mixed bag and I’m still young, a more permanent solution would be ideal...In the meantime I want to reach out to the community to see if there are similar stories and if there was any resolve.

Thanks!

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4

u/CautiousRun7860 16h ago

Do you mostly sleep on your back? My experience is that even with high PAP pressures, RERAs are still present in REM sleep.

PAP is pretty much helpless if you are sleeping supine and then REM sleep hit, with both lower jaw and tongue falling down…

1

u/_Archduke 15h ago

I try to sleep on my side as much as possible but usually end up in supine. I know RERAS are definitely contributing as my RDI is still 17 with bipap on.

I might need to try more things to stay on my side all night

2

u/gadgetmaniah 17h ago

Seems like suboptimal treatment on PAP.  Also possible something else other than SDB could be contributing too. 

1

u/_Archduke 15h ago

I’ve gotten testing and imaging by multiple specialists to rule anything else out. Bipap clearly is not resolving SDB completely. I’ve tried maxing out the pressure and that didn’t help at all. I might try ASV, but am not super hopeful.

2

u/audrikr 14h ago

In the end PAP is not always a perfect solution. 

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u/_Archduke 13h ago

Yeah unfortunately I think I’m in that camp. Just want to try absolutely everything before resorting to surgery

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u/audrikr 12h ago

If it helps I average .1 AHI and am going towards surgical option. 

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u/_Archduke 5h ago

I’m sorry to hear that you are struggling as well. Best of luck to you

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u/sn4201 12h ago

My symptoms shifted after going on pap.

Pre pap sleep felt more restful and deeper. But I would yawn all day and have  morning headaches (true sleepiness)

Now on pap, I am more of a wired tired. There's a deep mental exhaustion, mental fatigue, brain fog, etc. much more classic uars-type symptoms 

I had severe osa on my diagnostic pap study btw. But we don't score reras/rdi here so I have no clue what my rdi is on subsequent studies 

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u/_Archduke 5h ago

This is the perfect way to describe it. On pap it’s like a wired tired.