Tired since I was a kid. Possible UARS? RDI 3x higher than AHI.

[squado]

Ok, so, forgive me for being very green though I figured I asked. I just learned about UARS after I was diagnosed. 

Context: I slept well once in my entire life. It was under strange circumstances. I always get a "normal" sleep, 8 hours, regular times, but I had stayed up all night chilling on a weirdly inclined gravity chair talking to a friend. I went to sleep at 7AM in my regular ol' bed, woke up several hours later feeling as if I had just woken up from a 23 year long nightmare. That day was amazing. Also, rather rudely, everyone I knew told me immediately that I look alive and not like I'm literally dying for once, lol...and yes, I feel like a zombie all the time. Some days are slightly better than others, but I even recall as a little kid feeling absolutely destroyed after going with my mom to the store for 30 mins. 

I am a very quiet person. Almost selectively mute; I go weeks without talking. I just don't have the energy to talk--that night was the exception. I grew up with a speech disability because of my jaw issues so it has lead me to be a very unconfident, skittish young woman that just doesn't bother talking, often for days and weeks at a time. I do work online, but it is very energy/focus based. 

I tried getting a sleep study done several times, wasn't able to sleep at any and going through my insurance took almost a year each time, and I finally got a 90$ at home test from Lofta. I was diagnosed. AHI about 10, RDI 25. Prescribed an auto-cpap. And something was kind of weird. Again, put a mammoth sized grain of salt with this because Watchpat isn't really that accurate, but both my AHI and RDI were almost twice as bad on my right side? I usually sleep on my left but I didn't get much data there. That made me wonder about things. Also, my REM sleep was, like 5% with almost all my sleep being light. 

I recently realized that I often sleep in a chicken-position when I'm on my side, head very forward, neck bent. A lot of neck pain all the time. 
So, if the watchpat wasn't making stuff up, that might explain why my scores were so much worse on my right side I decided to get a 8$ (thank you, coupons!) cervical collar to help prevent this. It came in the mail today. I'm thinking also about a head strap that keeps the jaw forward/up--found a video on how to make one for cheap.  

ALSO, I have a mis-alligned jaw I was greenlit for double jaw surgery to fix and I already got insurance-covered surgery to help my deformed nose to help me breathe better. I have no idea if these issues are at all related. I also don't know if my very small neck (12") contributes. Moreover, I grew up fat. Was fat since I was 1. I lost weight in college. I feel like there was a brief year or two I felt 5/10ish, but for some reason as time went by I've felt weaker even as my body has gotten fitter. I don't know if it's age worsening my condition. 

Anyway, so, that's it. Unfortunately I don't really have that much data yet. I am asking here primarily because...I don't really have the money to invest in a cpap and if it is UARS more than regular ol' sleep apnea the treatment might be complex. I *can* get one on a payment plan (the Resmed Auto 10) at 600$ and maybe one used at about 300$ (I'm not sure about going through unofficial means to do so, I feel like I do want some sort of warranty + support).
I'd love to hear from people that have been in similar positions...to see if I should just get an APAP ASAP even if there is a chance that alternative treatments can help. I kind of expect to be told, "yes!!" and honestly that's enough for me. However, I do want to hear about it in context to potential UARS because I hear that CPAP doesn't always help it. 
There is also a chance I can get an appointment via my insurance to a ENT. It's just very unlikely I can actually choose who I see, so I'm not sure what diagnoses can be made.

I know about OSCAR anyway so even if the APAP doesn't help it will at least collect data and I am well aware that there's people that take months to improve too. 


I'm happy to at least be here on this forum, and I will be grateful for any assistance. And let me emphasize, yep, I know Watchpat isn't great, but it isn't like I can choose where I go for an in-lab sleep study. I don't even think a tranquilizer was an option at the ones I tried.

[squado]

Oops! Not sure how to edit. I was diagnosed with mild obstructive sleep apnea probably because my AHI wasn't really bad.

[Jay Belmont]

All of this will make more sense if you look at everything as a spectrum or constellation of breathing related sleep disorders. The answer's right in the names: Upper Airway Resistance Syndrome and Obstructive Sleep Apnea... obstructions in the airway causing interruptions in breathing. I was diagnosed with UARS before Apnea because at the beginning I was clearly suffering, and there were measurable issues with my breathing, but I didn't meet the criteria for a full diagnosis of OSA. Which makes sense, obstruction is just 100% resistance.

With that in mind, consider the key details you've posted:

AHI about 10, RDI 25... ...both my AHI and RDI were almost twice as bad on my right side?

...ALSO, I have a mis-alligned jaw I was greenlit for double jaw surgery to fix and I already got insurance-covered surgery to help my deformed nose to help me breathe better. I have no idea if these issues are at all related. I also don't know if my very small neck (12") contributes. Moreover, I grew up fat. Was fat since I was 1. I lost weight in college. I feel like there was a brief year or two I felt 5/10ish, but for some reason as time went by I've felt weaker even as my body has gotten fitter. I don't know if it's age worsening my condition.

All of this makes perfect sense. For most of us we suffer primarily from apneic events involve the soft tissues of the upper airway and throat and some of us also central apneas. From what you're describing it sounds like your biggest issue right now isn't your throat, but your jaw and nose/sinuses. It's not that the air can't get down your airway, it's that it can't get into your airway. Hence why your readings show respiratory related issues but not apneic events. This could also explain why your readings are different on each side; It's perfectly possible that your jaw and nasal issues aren't symmetrical internally.

Until your nose, sinuses, and jaw are all fixed up you can't really draw any conclusions on the remainder. Apnea's tricky like that and can often "come back" in a different part of the airway, but that doesn't mean you shouldn't definitely get your face fixed in general.

If CPAP helps stick with it, but for now I'd say it's most worth it to talk to your surgeon about whether your sleep breathing issues could be from the problems they're going to correct and whether it's worth it to go ahead and do a genioglossus or even full maxillomandibular advancement while they're already in there breaking and rebuilding your facial structure.

[squado]

Thank you for the reply! About the asymmetry thing, it checks out because, well, I have a crossbite (as well as 3 other bite issues, never got braces because my family couldn't afford it) and the two sides of my face look dramatically different--people have commented about it. I'm not really sure if one is simply more malformed than the other and a huuuuuuge annoyance is that I pretty much have 0 data for my left side, which I usually sleep on and I don't know if I actually sleep better on it. 

I'll have to check out alternative treatments too as you suggested. Just wish it was simple.

[squado]

ALSO! I decided to just get a cpap used from someone locally. I know this is risky, but I figure that I could find a public place we can go so I can test it.
I...am actually wondering if I should get an ASV or bilevel. I know. I was prescribed an APAP. And I know, money was an issue. It's just I see options for about 200-400 locally. It's already like 400$ to get a fully refurbished APAP online and I'm not really sure if it's really that worth it.

So, my reasoning is this: as far as I know, the Resmed ASV does have different modes. That the CPAP one isn't really that good, but sufficient. Basically, if I get it, I would be able to trial most things. I am looking up research and seeing there being some promising evidence for it treating RDI issues and UARS. Again, I'm a mega noob and also I haven't researched *that* much but I hope someone can tell me if this idea is silly.

[Apnea23]

UARS here, with REM sleep distruption currently the only thing effecting my awake self. Cognitive issues, low libido, rising blood pressure, flushed face, yadda yadda. Likely soft palate related but yet to be determined.

I say this because you mentioned you only had 5% REM sleep. I imagine during REM when everything relaxes, this is when your brain has to poke you most to keep you breathing and saturated. This may be killling your REM cycle and there is a good chance no ammount of pressure during REM will be able to break through your mallocluded airways. But you never know, maybe a bit of pressure is all you need, especially side sleeping on your best side.

Because REM only makes up 20% of sleep anyway, providing CPAP is sufficient to help you breath without obstruction for the rest of your sleep you should at the bare minimum feel awake and ready for the day.

CPAP resolved all of the tiredness from all of my sleep being wrecked, which it may very well do you for - so for that it's worth a try, it may be game changing.

I don't see what you have to lose.

I own an ASV, VAuto, a Resmed Autoset and Dreamstation.

CPAP/APAP will suffice for your needs I imagine. My ASV is in the cupboard and I'm using CPAP while I investigate and experiment on my upper and lower airways.

If you're wondering, it was 2 years since starting therapy I looked at Oscar and realised one specific sleep stage was being trashed - but the rest of my sleep was great.

I don't think you'll regret trying CPAP, and like you say, you'll get lots of useful data about your sleep.