Treating UARS after surgery, MAD and possibly aPAP failure. Looking for advice on how to proceed.

To the original poster -

Hi - I just wanted to say that I'm in a very similar spot, life-wise, as you. Had all of life ahead of me in my 20s and it was cut spectacularly short by sleep apnea. I think I complained about fatigue to at least 12 doctors over 7 years before one suggested a sleep apnea study, and by that point I was so anxious from lack of decent sleep I wondered if I was just crazy and if they would even find anything. Luckily (or unluckily) it was severe sleep apnea. Moderate AHI during NREM (20/hour) and severe AHI during REM (89 events an hour).

Like you - not long after starting treatment I saw a massive difference within 3 days of apap and felt like I was a person again with hopes, dreams, a memory, and a future and then I started to feel exhausted again.

I went back to my ENT, who was not a sleep specialist, and asked him all kinds of questions about sleep he couldn't answer. He charged my insurance $1000 for the appointment, somewhat accused me of being hysterical for wanting a titration study with an apap, and that deflated me quite a bit. But luckily I found a a board certified sleep doctor, who I believe also suffers from sleep apnea (he didn't quite disclose it but mentioned that he had many of the risk factors, like having had teeth removed for braces, and also wisdom teeth removal, small jaw) and most importantly, he believed me when I said I felt terrible.

The same day as my appointment, he got me in for in a titration study and I ended up on a bipap. I feel better, but not all the way there yet.

To increase understanding of sleep apnea and UARS, I read some papers on pubmed and am also thinking about buying a book by the inventor of cpap. I don't know if this is the right route, but understanding my condition and durable medical equipment operation better is SOMETHING I can do.

It's so frustrating how long it has taken to feel better again and how much of life has and continues to pass me by.

Just wanted to commiserate and say that I will be following your thread and hope you can find a resolution for your issue. You are definitely not alone.

Post by musculus » Tue Jan 22, 2019 10:29 pm

NP. The TRD pulls the tongue out more effectively than MAD. They also put pressure on the teeth, but to a smaller extent.

That's interesting. I'll add that to the things to try list. The more things the better. Interestingly I feel pretty decent today after trying to stay in the prone position, despite what my flow rate seems to say. Not great but not feeling like I'm on death's door. I've got a shirt with a pocket I sewed on the back for a tennis ball so I'll try that tonight and see if that helps keep me off my back.

To Dogsarelife:

Sorry to hear your situation is similar to mine. It's disturbing how long it can take for any sort of concrete diagnosis but when you do it's definitely a mix of relief, hope and full on grief for the years lost (at least in my case). The lack of sleep itself does make me batshit crazy sometimes and I do wonder if I'm just slowly becoming untethered. When I have a somewhat good night it becomes immediately apparent it's just long term sleep deprivation. I also realise now just how important it is to actually find a practitioner thats on board and *believes* you, otherwise it spells bad news for mental health. Personally I'm still looking.

I'm also reading and doing absolutely everything I can, no matter how out there it may be. It's swim or die.

It feels incredibly cathartic to be getting these responses as for the longest time it's been an internal struggle with no one to really relate to aside from stats I see in papers. I should have reached out a long time ago. I'm glad that you're starting to feel better on bipap. I really do wish you the best.

Snoregone Conclusion wrote: ↑

Mon Jan 21, 2019 5:54 pm

my background is such that the odds are incredibly low (perhaps not zero) you'd know something in this field that I don't already, or that I couldn't learn quickly. I've been online since the late 80's and writing software since before that, and I'm far from limited to a single platform or language, etc.

That's good that you said this.

Hi all,

Just wanted to post an update and see if I could ask for opinions on a sleepyhead chart. I've picked one at my current pressure settings (8-12). I hope I formatted correctly.

Screen Shot 2019-01-25 at 3.56.05 PM by , on Flickr

I've actually been feeling pretty decent the past couple days, though I can't really see much evidence of any change in my graphs... One thing that has been worrying me is that my headgear seems to be getting looser and looser and as a result I seem to be experiencing more leaks which consciously wake me up one or two times a night. I'd really like someones thoughts on my flow limits as well as they look quite scary to me and seem to be unfazed by anything I do pressure wise (I have yet to see what they do in response to anything above 12 due to aerophagia). As a final point I seem to be experiencing centrals all over the place but I don't believe they are real as they are *always* preceded by what I am sure are arousals. There are a LOT of them that look like this but most aren't flagged as centrals. Why these keep happening I have no idea, but they worry me to no end as they look spontaneous to me, which makes the game a lot harder to play. They look like this:

Screen Shot 2019-01-25 at 4.11.09 PM by , on Flickr

Again any thoughts would be most appreciated. I've spent ages pouring through these and I've gotten to the point where I'm second guessing everything. One minute I think I understand everything and the next I'm pulling my hair out. I know there's only so much to be gained from sleepyhead for a person in my situation but I intend to extract every piece of information I can to educate myself as not knowing all I can is unbearable. Cheers.

Are you experiencing any nasal congestion? If you are that might explain some of the ugliness of the flow limitation graph.

That Central/CA that you zoomed in on....looks like post arousal to me.
Not quite asleep right before it got flagged...maybe a turn over in bed and hold your breath kind of thing.
Or might be spontaneous arousal...and like you said...much harder to evaluate because the "spontaneous" term means we don't know what caused the arousal. Hard to fix a problem when you can't identify the problem.