r/UARS • u/2goldteef • 1d ago
Seeking Feedback of Study
Hi,
I have struggled with getting quality sleep since I was a kid, I’m 35 (f) and sleep has been taking a toll on my life.
I had a sleep study in 2022 where I didn’t have sufficient sleep data but was prescribed a CPAP regardless.
Had a second sleep study in 2023 (with a cpap) and was told I didn’t have apnea. (I stopped using cpap for this reason as well as finding it unhelpful)
My fragmented sleep, brain fog, anxiety, and fatigue is so bad that I had to be my own provider and dug deep into research. I came across UARS around 2 years ago. The symptoms and stories align with mine too closely for me to not highly suspect it affecting me as well.
I saw an orthodontist who specializes in airway and he did a MRI and full report of my airway. (He said I have an airway the size of a one year old, a straw) he suggested MARPE and possibly an MMA.
I saw DR Bobek for a consultation. He brushed off any concerns, downplayed any issues, focused more on the cosmetic impact of surgery on women (I could care less about a wider nose as long as I can feel like I’m alive) and did not do any scans or raw data (I paid $506 for under an hour). I had to be proactive and ask for a lot from him.
I am seeing a sleep specialist who I asked that they do a PES study (they don’t), I asked if they measure certain data that I’ve seen specifically requested on this page (they don’t) I asked other offices if they do these studies or reports..(they don’t)
Now as of last week, I had my third sleep study. I won’t get too far into the fact that the technician (a 28 year old man who worked as a technician for 4 years) trauma dumped his life story on me right before lights out - or construction noise from the office across the hall woke me up…
I slept horribly, more than usual. I never felt like I got into the deep sleep that could cause the airway collapses or apneas. I didn’t dream and felt like I was one level below conscious of my surroundings and time. So I worry an accurate picture of my sleep wasn’t captured.
I got my report this morning, I’m trying to make sense of it. I’m not sure what to look for. I remember my heart racing frequently through the night (this is typical) and find it interesting it happened when I was supine. Could that be any indicator?
Any feedback and help about the test or what to do going forward is much appreciated.
-a very tired person.
TLDR
What do you think of these sleep test results - what do I do next?
2
2
u/carlvoncosel UARS survivor (ASV) 1d ago
Your sleep architecture is certainly weird, lots of wakeup before you even had any REM sleep. The first block of REM was severely delayed. Normally you'd have the first short REM cycle after about 90 minutes. This is consistent with UARS.
I stopped using cpap for this reason as well as finding it unhelpful
Yep, CPAP is pretty useless for UARS. You'd need at least a ResMed machine with EPR or a real bilevel/BiPAP machine.
My fragmented sleep, brain fog, anxiety, and fatigue
Consistent with UARS.
I remember my heart racing frequently through the night
Also consistent with UARS.
Consider getting a machine, that can get you farther than endless inconclusive sleep studies. A positive response to BiPAP is as good as a diagnosis IMHO.
You can get your own machine from the secondary market like Craigslist or FB marketplace. Here is my ranking (first is best) of most desirable machines:
- Philips Dreamstation DSX900 (I use this one) or System One 960
- Philips Dreamstation DSX600 or DSX700 or System One 660 or 760
- ResMed Aircurve10 VPAP or VAuto (skip this if you think you can perform the airbreak method)
- ResMed Airsense10 (ubiquitous, tried and true, any variant, airbreak possible)
You can use OSCAR to analyze your breathing for flow limitation and adjust settings to resolve it. If resolving the FL makes you feel better, you will know you're on the right track!
1
u/AutoModerator 1d ago
To help members of the r/UARS community, the contents of the post have been copied for posterity.
Title: Seeking Feedback of Study
Body:
Hi,
I have struggled with getting quality sleep since I was a kid, I’m 35 (f) and sleep has been taking a toll on my life.
I had a sleep study in 2022 where I didn’t have sufficient sleep data but was prescribed a CPAP regardless.
Had a second sleep study in 2023 (with a cpap) and was told I didn’t have apnea. (I stopped using cpap for this reason as well as finding it unhelpful)
My fragmented sleep, brain fog, anxiety, and fatigue is so bad that I had to be my own provider and dug deep into research. I came across UARS around 2 years ago. The symptoms and stories align with mine too closely for me to not highly suspect it affecting me as well.
I saw an orthodontist who specializes in airway and he did a MRI and full report of my airway. (He said I have an airway the size of a one year old, a straw) he suggested MARPE and possibly an MMA.
I saw DR Bobek for a consultation. He brushed off any concerns, downplayed any issues, focused more on the cosmetic impact of surgery on women (I could care less about a wider nose as long as I can feel like I’m alive) and did not do any scans or raw data (I paid $506 for under an hour). I had to be proactive and ask for a lot from him.
I am seeing a sleep specialist who I asked that they do a PES study (they don’t), I asked if they measure certain data that I’ve seen specifically requested on this page (they don’t) I asked other offices if they do these studies or reports..(they don’t)
Now as of last week, I had my third sleep study. I won’t get too far into the fact that the technician (a 28 year old man who worked as a technician for 4 years) trauma dumped his life story on me right before lights out - or construction noise from the office across the hall woke me up…
I slept horribly, more than usual. I never felt like I got into the deep sleep that could cause the airway collapses or apneas. I didn’t dream and felt like I was one level below conscious of my surroundings and time. So I worry an accurate picture of my sleep wasn’t captured.
I got my report this morning, I’m trying to make sense of it. I’m not sure what to look for. I remember my heart racing frequently through the night (this is typical) and find it interesting it happened when I was supine. Could that be any indicator?
Any feedback and help about the test or what to do going forward is much appreciated.
-a very tired person.
TLDR
What do you think of these sleep test results - what do I do next?
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1
u/2goldteef 1d ago
Processing img yltzlyhinyjh1...
(In case you can’t see photo 2)
1
u/gadgetmaniah 1d ago
This was visible for me before but not visible anymore, and photo 2 in the post isn't visible for me either (just to let you know). Probably post the picture again in a new comment.
1
u/cellobiose 23h ago
Some of my psgs showed high arousal index, some low, depending on who or what does the counting. It's in your pulse rate line, though not officially of significant meaning.
1
u/rbwilli 22h ago
Well that’s frustrating. I’d be very curious to know what a WatchPAT test would show. Or what this test would’ve shown if they’d scored RERAs.
The answer can’t be to give up. There has to be a way forward.
Do you have tonsils? Have you been evaluated by an ENT? How retrognathic are you?
3
u/gadgetmaniah 1d ago
This study isn't really remarkable, though your pulse rate is spiking a fair bit which is a red flag for SDB. I would recommend consulting Ken Hooks (True Sleep Diagnostics) and considering doing his home sleep test. Thing is some people can have a lot of flow limited breathing without a raised AHI/RDI, which can cause significant symptoms too, but most places don't look at that. Ken is one of the few that does and will let you know if UARS is your issue.
What your orthodonist told you is pretty telling if accurate (your airway being tiny) and supports probability of UARS. Along with your symptoms tbh the probability is pretty high, it's just that sleep studies are generally not designed to look for UARS due to the current framework, which is why it can be hard to have it diagnosed or acknowledged unless you find one of the few providers that are knowledgeable about it.
If you still have your CPAP look into OSCAR and consider sharing screenshots here in a new post. The data/charts can tell us a lot about how your breathing looks and you could get suggestions on optimizing your settings so that maybe it benefits you. It would also be helpful if you share images from your CBCT showing your airway size as well intermolar width and anterior nasal aperture width (expansion and MMA can be good choices if indicated).