Noobie, please help me cure my UARS :/

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
newuser1002
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Noobie, please help me cure my UARS :/

Post by newuser1002 » Fri Nov 04, 2022 2:55 am

Hey all,


TLDR: 22M normal weight (5'8 135) but with a recently fattier neck, with lots of allergies -> enlarged turbinates -> UARS / mild sleep apnea (my best guess). Really bad cognitive symptoms for the past 3 years, songs constantly in my head and very difficult to concentrate, general anhedonia, fatigue, you know the drill. Started using Resmed 10 Autoset for the past few months and have tried multiple settings. Hasn't really improved my symptoms though :(. Really sick of this sh*t and want to fix it so bad and just be normal again. Any ideas of how to fix my UARS? Specific details below.


Right now, I do a Dreamwear FFM, constant 7 with EPR 3, no humidification. Heard that pressure support/EPR helps with UARS, so I do EPR 3. (I've also tried non-PAP interventions that help somewhat: I sleep with an incline pillow, since I often get more obstructive apneas on my side/back. I use mouth tape every night to encourage nose breathing. Antihistamine spray and Nasacort/Flonase and saline rinse also help a lot. Replacing bedding with high quality allergy-proofing, frequently high temperature washing, expensive air filter, vacuum, etc. I've been tracking my symptoms (as objectively as I can) and sleep simultaneously to measure correlations between them using an app called Bearable.) Previously I've also tried doing pressure between 4-7 or 7-10, also constant 5-5. It's hard for me to tell what was better though, since I was also living at different places (travelled a lot over the summer) with varying degrees of allergic responses to the hotels/houses, so I'm unsure of what insights I can get from that history.


Problems with my sleep:
  • I get 0.5 - 4 AHI on the daily, averaging between 1 and 2.5, generally a mix of OA/CA/Hypopnea. I feel like there's some other weirdness that isn't getting counted as well.
    I think my actual breathing patterns look really weird.
    I think my tidal volume looks quite low, though I don't know much about it.
Here's a 5 OSCAR screenshots: https://imgur.com/a/jkNCYuk
Contains a sample good day, sample bad day, and some breathing samples.


Any suggestions on how I should adjust my titration at this point to fix my breathing and lower my AHI/RDI? Unfortunately, I feel about the same as I did before PAP therapy :(. I would absolutely love your help, please let me know if there's anything else I can provide!

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Rubicon
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Re: Noobie, please help me cure my UARS :/

Post by Rubicon » Fri Nov 04, 2022 3:44 am

What medications are you taking?

Who told you you have UARS?
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

lynninnj
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Re: Noobie, please help me cure my UARS :/

Post by lynninnj » Fri Nov 04, 2022 8:44 am

You said: mild sleep apnea (my best guess)
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Are you guessing you have sleep apnea? Or did you have an actual sleep study?

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newuser1002
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Re: Noobie, please help me cure my UARS :/

Post by newuser1002 » Fri Nov 04, 2022 12:22 pm

Rubicon wrote:
Fri Nov 04, 2022 3:44 am
What medications are you taking?

Who told you you have UARS?
I take Azelastine (antihistamine nasal spray) and Nasacort (another nasal spray like Flonase), but no other medications.

I'm guessing I have UARS based on the fact that I have enlarged turbinates (ENT diagnosed) and nasal congestion at night, stemming from long term allergic response. Also, my original sleep study showed AHI < 5 but RDI > 5. I'm not sure how accurate my original sleep study is, but here is my sleep study and titration study: https://imgur.com/a/le88GGq

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Rubicon
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Re: Noobie, please help me cure my UARS :/

Post by Rubicon » Fri Nov 04, 2022 1:07 pm

newuser1002 wrote:
Fri Nov 04, 2022 12:22 pm

I'm guessing I have UARS based on the fact that I have enlarged turbinates (ENT diagnosed) and nasal congestion at night, stemming from long term allergic response. Also, my original sleep study showed AHI < 5 but RDI > 5. I'm not sure how accurate my original sleep study is, but here is my sleep study and titration study: https://imgur.com/a/le88GGq
Yeah, I saw it in your original thread.

I admit to be confounded in that your REM is significantly delayed in the absence of REM-suppressing drugs.

Gotta think about that...

By definition I don't think you have UARS. AHI and RERA are counted separately and I think you just miss:
UARS was defined by polysomnography as follows: apnea-hypopnea index < 5 events/h, oxygen saturation ≥ 92%, respiratory effort–related arousal index ≥ 5.
Of course, you could counter by saying "Everybody just makes up their own definitions for UARS! So can I! Half the people don't even think there is such a thing!"

Cure "UARS" with a CPAP machine?

Ain't gonna happen.

A cure might result from reaming out those fat turbinates, but read up on "empty nose syndrome".

Anyway your AHI/RDI/RERA is so minimal I don't think that has anything to do with your symptoms.
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

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Re: Noobie, please help me cure my UARS :/

Post by Rubicon » Fri Nov 04, 2022 5:19 pm

So why is your usual bedtime 3 AM?
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

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Rubicon
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Re: Noobie, please help me cure my UARS :/

Post by Rubicon » Fri Nov 04, 2022 5:24 pm

From one of the reports:

Image

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Rubicon
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Re: Noobie, please help me cure my UARS :/

Post by Rubicon » Fri Nov 04, 2022 5:29 pm

Like the 83% lowest sat in the titration. Outright lie.
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

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Re: Noobie, please help me cure my UARS :/

Post by Rubicon » Sat Nov 05, 2022 2:47 am

Rubicon wrote:
Fri Nov 04, 2022 1:07 pm
...read up on "empty nose syndrome".
Sorry, I see you already did.

And yeah, "rare" seems to be a relative term.

IIWM I''d base my decision on risk/benefit.
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

newuser1002
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Re: Noobie, please help me cure my UARS :/

Post by newuser1002 » Sun Nov 06, 2022 11:42 pm

Rubicon wrote:
Sat Nov 05, 2022 2:47 am
Rubicon wrote:
Fri Nov 04, 2022 1:07 pm
...read up on "empty nose syndrome".
Sorry, I see you already did.

And yeah, "rare" seems to be a relative term.

IIWM I''d base my decision on risk/benefit.
Yeah turbinate reduction is certainly an option. Though I'd like to see if I can solve it without it for a few reasons: I'd still like to avoid a 1% risk of ENS. Right now, I have too much going on to take time off for recovery, since I just started working out of college and running a startup on the side. And I've also heard of people whose sleep / PAP therapy became worse after surgery. In essence, it's a coin flip (perhaps weighted in favor of me, but still) with a fixed cost (recovery time), whereas an option of just working harder and investing more time exists - searching online forums, trying all sorts of random interventions. After I feel that second option is exhausted, which may indeed happen eventually, will I consider surgery,

As for why I generally slept at 3 am, that's a difficult question to answer, and I'm not sure if I can confidently identify a set of root causes. In any case, that generally isn't true anymore. I sleep between 12-2am every day and wake up between 9am-10am (except for weekends that I go out, in which case I may sleep at 3-4am until 12pm. That happens frequently, every 1-2 weeks).


Is it possible / how likely is it that my REM sleep was lower on this particular day since I used to generally sleep later (like 3 am) and rem sleep occurs more often later in the sleep cycle? Perhaps my body wasn’t used to sleeping so early. Not sure if it works like that. I do think my normal sleep without PAP is probably worse than 3.2, 8.8 since I have worse allergies in my apartment and have notably worse symptoms there versus at certain hotels that are kinder to my nose. In any case, I plan on getting retested in the near future.

Even though my AHI/RDI/RERAs isn't as bad as others, I'm fairly convinced that is the root cause of my symptoms. I can't think of anything else that could be causing my symptoms. I don't have anxiety (my gf does, so I know what that looks like) and I've gone to the neurologist before with a negative result. I've tried all sorts of other angles, like blood tests/supplements, elimination diet, kefir for gut, exercise (which does help to some extent), brain EEG (no abnormalities), literally listening to less music etc. Haven't tried neck posture I guess, but that space is hard to navigate because of all the junk science and fake content out there. And beyond that, the case for UARS/sleep apnea for me aligns very well - all my symptoms started when I moved into an apartment I was super allergic to, which made me start snoring and being tired all the time. Presumably, this caused me to have enlarged turbinates -> UARS/sleep apnea.

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Miss Emerita
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Re: Noobie, please help me cure my UARS :/

Post by Miss Emerita » Mon Nov 07, 2022 11:43 am

Are you still in the same apartment? If so, can you move?

Have you seen an allergist and gotten tests to determine what you're allergic to? Have you considered allergy shots?

I'm not sure what an incline pillow is. Because you have few OAs, having more of them in one sleep position than another is probably not as important as sleeping comfortably. Many people do best with a fairly low, firm pillow.

Here's some information about unwanted music intruding into your thoughts:

https://www.health.harvard.edu/blog/why ... 7100412490

Did your medical work-up include all of the following: tests for thyroid function, anemia, testosterone levels, autoimmune disease, Lyme disease?

Take a look at the idealized flow rate in the O on the welcome page for Oscar. That's closer to a normal flow rate than the one you posted. It's common to see a pause after exhalation (which will show up as a short stretch on the zero line), and it's common to see a bit of spikiness in the exhalation trace. Small oscillations around the zero line during pauses are nothing to worry about; they may be caused by your heartbeat.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

newuser1002
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Re: Noobie, please help me cure my UARS :/

Post by newuser1002 » Tue Nov 08, 2022 12:44 am

I moved out from that apartment 2 years ago; however, that only mildly improved my symptoms - still not close to normal.

Regarding allergies, I saw an allergist 3 years ago - I'm severely allergic to dust mites. Also some molds, cats, and other animals. I don't think molds/cats/other animals are a concern at this point. However, I've spent a lot of effort making my (new) apartment and room dust-safe. I got high quality allergy protection (from Mission: Allergy, as recommended by Reddit) - dust-mite mattress protector, pillowcases, and pillows. I wash all my bedding with high heat every week. I also have a high quality vacuum and air filter. I do find that my nose is less blocked on Sundays, when I do my weekly cleaning / washing, and gets worse throughout the week.

Regarding incline pillows, search up on google images 'wedge pillow'. I take this to an extreme - I don't actually have a wedge pillow, so I actually just sleep sitting up, almost 90 degrees. More like 70 degrees, using some lower back support. I'm careful to not let my chin tuck, and I use mouth tape so my jaw doesn't fall down and cause my mask to leak and mouth breathing.

Regarding blood tests, my thyroid is mostly normal (I think roughly 2.0 TSH), testosterone is fairly low for being 22M, but not severely low (roughly 450). Didn't test for anemia, autoimmune disease, or Lyme disease, but I don't think those are likely culprits. I'm relating everything to back when my symptoms first started, and that's when I moved into a new apartment 3 years ago that I was super allergic to, which caused me to start snoring and being tired all of the time, along with having constant songs in my head and inability to concentrate. The story makes the most sense as sleep problems.

Do you know what time scale that O in the OSCAR welcome page is? If I make my time scale longer, then my graph looks fairly close to that most of the time, albeit sharper at the edges.

Thanks so much for the response, I recognize you from my previous post as well :).

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Re: Noobie, please help me cure my UARS :/

Post by robysue1 » Tue Nov 08, 2022 7:31 am

newuser1002 wrote:
Tue Nov 08, 2022 12:44 am
Regarding incline pillows, search up on google images 'wedge pillow'. I take this to an extreme - I don't actually have a wedge pillow, so I actually just sleep sitting up, almost 90 degrees. More like 70 degrees, using some lower back support. I'm careful to not let my chin tuck, and I use mouth tape so my jaw doesn't fall down and cause my mask to leak and mouth breathing.
Why are you sleeping sitting up?

Unless you have some kind of GERD problems, I don't understand your choice to sleep sitting up. You might just get better quality sleep and feel more rested if you laid down in the bed to go to sleep. And that in turn may lead to less daytime sleepiness and daytime fatigue.
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newuser1002
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Re: Noobie, please help me cure my UARS :/

Post by newuser1002 » Tue Nov 08, 2022 3:25 pm

robysue1 wrote:
Tue Nov 08, 2022 7:31 am
newuser1002 wrote:
Tue Nov 08, 2022 12:44 am
Regarding incline pillows, search up on google images 'wedge pillow'. I take this to an extreme - I don't actually have a wedge pillow, so I actually just sleep sitting up, almost 90 degrees. More like 70 degrees, using some lower back support. I'm careful to not let my chin tuck, and I use mouth tape so my jaw doesn't fall down and cause my mask to leak and mouth breathing.
Why are you sleeping sitting up?

Unless you have some kind of GERD problems, I don't understand your choice to sleep sitting up. You might just get better quality sleep and feel more rested if you laid down in the bed to go to sleep. And that in turn may lead to less daytime sleepiness and daytime fatigue.
I've found that my nose is much less congested when I sit up compared to when I lay down. I also have some instances of presumably positional apnea (a few OAs that are close in proximity) when I sleep flat. I try to sleep on my side, but I always unconsciously lay on my back throughout the night. I can't figure out any way to enforce side-sleeping - I've tried the tennis ball trick, bought some jet-pack lookin things, a backpack, etc. So I've basically given up on that for now.

I wasn't aware that my sleep would be worsened at all by being in a sitting-up position - is this true? It doesn't hinder my ability to fall asleep in any way. Though if there's some other detriment to doing so, I'll definitely consider switching back to sleeping flat.

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Re: Noobie, please help me cure my UARS :/

Post by robysue1 » Tue Nov 08, 2022 4:55 pm

newuser1002 wrote:
Tue Nov 08, 2022 3:25 pm
robysue1 wrote:
Tue Nov 08, 2022 7:31 am
newuser1002 wrote:
Tue Nov 08, 2022 12:44 am
Regarding incline pillows, search up on google images 'wedge pillow'. I take this to an extreme - I don't actually have a wedge pillow, so I actually just sleep sitting up, almost 90 degrees. More like 70 degrees, using some lower back support. I'm careful to not let my chin tuck, and I use mouth tape so my jaw doesn't fall down and cause my mask to leak and mouth breathing.
Why are you sleeping sitting up?

Unless you have some kind of GERD problems, I don't understand your choice to sleep sitting up. You might just get better quality sleep and feel more rested if you laid down in the bed to go to sleep. And that in turn may lead to less daytime sleepiness and daytime fatigue.
I've found that my nose is much less congested when I sit up compared to when I lay down.
You need to fix the nasal congestion problem.
I also have some instances of presumably positional apnea (a few OAs that are close in proximity) when I sleep flat.
If your xPAP therapy is optimized, you can sleep in any position you want to because the xPAP machine will splint the airway open and prevent it from collapsing. It may take more pressure to keep the airway open when you are on your back, but unless you have issues with aerophagia, allowing the machine to use a pressure that allows you to sleep on your back is in many ways preferable to trying to prevent back sleeping since preventing back sleeping is difficult.

I wasn't aware that my sleep would be worsened at all by being in a sitting-up position - is this true? It doesn't hinder my ability to fall asleep in any way. Though if there's some other detriment to doing so, I'll definitely consider switching back to sleeping flat.
Your body can't really get fully relaxed if it has to support itself in a vertical sleeping position. Sleeping while sitting up can be hard on the back. It can also be hard on the lower legs in terms of fluid retention: The heart has to work harder to prevent blood from pooling in your feet when you sleep sitting up.
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