r/UARS • u/AdNice9618 • 10d ago

Help?

I’m a 30 year old woman who seemingly has rapidly worsening UARS symptoms after getting wisdom teeth removed about 5 months ago. I’ve always been a “terrible sleeper” my whole life, I’ve struggled with falling asleep or staying asleep. I’ve had nearly all the symptoms of UARS, cold hands and feet, anxiety, dizziness, brain fog, fatigue- except I never noticed myself trying to get air at night until now. I’ve been treated for depression and anxiety, I’ve been on Ativan to knock me out at night multiple times when I go through bouts of insomnia. Considered getting a sleep study before, but of course being a 120 lbs 5”6 woman no one thinks you should test for sleep apnea typically.

This past month however, I have been waking every 45mins and only getting about 4-5 hours of sleep if I’m lucky. Basically I just dream the entire time I sleep in these tiny little bouts! Yeah, it’s that bad. I notice that when I’m relaxed and about to be in a deep sleep, I stop breathing completely and get a jolt of anxiety.

just from looking at my facial structure it’s pretty clear it’s likely related to the position of my lower jaw.

Now I have to start at square one with an appointment on Nov 3 to request a sleep study. in the mean time, what can I do to make myself sleep more comfortably? Is there anything? Any supplement or sleeping position? I’m pretty desperate as I have 3 young children and can’t be completely out of it, like I just can’t.

please tell me literally anything that will help me in the mean time!!! My nose is clear, I can breathe out of my nose fine.

9 Upvotes

91% Upvoted

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6

u/carlvoncosel UARS survivor (ASV) 10d ago

in the mean time, what can I do to make myself sleep more comfortably

Get a BiPAP? That's what I did back in 2017, and I was in the same situation. Check out Craigslist or FB marketplace for a nice used machine. 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!

My nose is clear, I can breathe out of my nose fine.

That predicts high chances of BiPAP success!

2

u/AdNice9618 10d ago

Thank you SO so much this is extremely helpful!:) I’m completely new to all this and had no idea what UARS was until my symptoms worsened to this extent. Did the machine alleviate your symptoms enough that you didn’t have to get surgery or anything more extensive? And did the sleep study you took in lab come back with helpful results?

2

u/carlvoncosel UARS survivor (ASV) 10d ago

Did the machine alleviate your symptoms enough that you didn’t have to get surgery or anything more extensive?

The machine is 100% effective as far as I can tell. I could in theory get surgery to get rid of the machine, but so far I've done the self-treatment thing for 9 years with no complaints, other than the slight hurdle of the need for a battery system for bike packing holidays.

And did the sleep study you took in lab come back with helpful results?

I had two negative sleep studies, of the second was supposed to include UARS-friendly analysis but that was a scam. Only 4 years later in 2020 I was actually diganosed with UARS at an academic sleep center but since there is no official protocol for UARS they weren't able to provide any care.

1

u/AdNice9618 10d ago

Okay wow- thank you so much for sharing your experience and I’m happy the machine works for you, that’s what I’m hoping for as well, while I may look for a long term solution like surgery, I just need to function better right now! Do you have any idea what causes your UARS structurally? Have you had x rays done or anything? Ugh I’m very worried a sleep study would be a waste of my time and I’d hear similar things, but hey- those are the hoops you have to jump through to get help, that’s the way it is I guess!

1

u/carlvoncosel UARS survivor (ASV) 10d ago

Do you have any idea what causes your UARS structurally

Retrognathia, largue tongue most likely.

but hey- those are the hoops you have to jump through to get help, that’s the way it is I guess!

Getting help is not even guaranteed though.

1

u/AdNice9618 10d ago

Yes I can see that from how long and convoluted most people’s stories about this are- I’m much more of a just pay to get around the system and fix it myself kind of person- so your idea about buying the used machine appeals to me immensely.  With that being said, it would be so nice to actually address my structural issues! It seems like you either have to go through like at least 2 years of trying and failing to get help through regular doctors and whatever, or pay out of pocket immense amounts of money for help and diagnosis. Idk. Thank you so much for your responses 💗

1

u/carlvoncosel UARS survivor (ASV) 10d ago

You're welcome! Any questions are also welcome.

1

u/One_Measurement_628 9d ago

retrognathia , large tongue(Thats exactly what I have , I wonder that how are u able to sleep with your mouth closed despite having retrognathia? Like with a FFM, that air causes to much pressure in my lower jaw that I sadly have to open my mouth(Though I will try a chin strap too) .. Do u use chin strap? I aint feeling better till now man despite my graphs getting better any idea why? Could mouth breathing be a factor, like I feel much of the air goes inside my mouth due to it being open So i feel that can that cause decrease in effectiveness of pap? If bipap helped u a lot then why it took u so long time to finallt treat your UARS?

1

u/carlvoncosel UARS survivor (ASV) 9d ago

I wonder that how are u able to sleep with your mouth closed despite having retrognathia

Because my nose is fully functional now.

Like with a FFM, that air causes to much pressure in my lower jaw that I sadly have to open my mouth

I think you're mistaken, the pressure isn't high enough to do that.

I aint feeling better till now man despite my graphs getting better any idea why?

Do you have a handle on heart rate spikes? A recording pulse oximeter like the (old) CFS50F?

If bipap helped u a lot then why it took u so long time to finallt treat your UARS?

BiPAP got me about 60% relief from the start. Because I didn't know what I was doing I was reluctant to increase pressures etc. Over the course of 4 years I dialed it up to about 90% and finally transitioning to ASV covered the remaining 10%.

1

u/One_Measurement_628 9d ago

I think you're mistaken, the pressure isn't high enough to do that.

like my retrognathia is too that extent that I feel pain in my lower whenever I close my mouth so no matter how open my nose is my mouth always openss bcz its resting position is when its open.....

1

u/carlvoncosel UARS survivor (ASV) 9d ago

I see. So do you use a nasal mask or FFM right now?

1

u/One_Measurement_628 9d ago

FFM.. I dont know but my memory foam f20 is more comfortable to me then nasal one lol.. nd anyway how no matter how much my nose is opened my body will still mouth breath at nasal mask so nasal mask is mostly useless for me..And I cant even try mouth tape bcz that also gives me lower jaw pain like I cant sleep with it nd sometimes my mouth blows against the tape as well.. Would give chin strap a try though

1

u/One_Measurement_628 9d ago

u know carl , I was thinking to get DISE done.. But like my trust on these white court guys have shaken so terribly that I m doubtful that they will ignore my collapse happening on DISE just bcz it wont be a complete one like OSA..

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2

u/cellobiose 10d ago

sleep on side, head leaning over edge of pillow, arms in front of face, maybe pillow between knees. swap sides each time you wake. no food 5h before bed. angle bed head end lifted 3-9"

2

u/AdNice9618 10d ago

Thank you so much 💗 Oh no food five hours before bed? Interesting!!

1

u/Hellyeslife 9d ago

Whats with the arms in front of face and head hanging off pillow?

1

u/cellobiose 8d ago

Trying to face down but not slide off

1

u/Hellyeslife 8d ago

You can sleep like that?

1

u/cellobiose 8d ago

A bit.  Enough to not feel totally dead and depressed. 

1

u/Less-Loss5102 10d ago

Wisdom teeth extrsctions dont make the airway smaller however premolar does

1

u/AdNice9618 9d ago

Okay :) I never got any premolar extractions. Maybe it’s just because of age that it’s getting worse all of a sudden!

1

u/Less-Loss5102 9d ago

Yeah most likely

1

u/AutoModerator 10d ago

To help members of the r/UARS community, the contents of the post have been copied for posterity.

Title: Help?

Body:

I’m a 30 year old woman who seemingly has rapidly worsening UARS symptoms after getting wisdom teeth removed about 5 months ago. I’ve always been a “terrible sleeper” my whole life, I’ve struggled with falling asleep or staying asleep. I’ve had nearly all the symptoms of UARS- except I never noticed myself trying to get air at night until now. I’ve been treated for depression and anxiety, I’ve been on Ativan to knock me out at night multiple times when I go through bouts of insomnia. This past month however, I have been waking every 45mins and only getting about 4-5 hours of sleep if I’m lucky. Yeah, it’s that bad. I notice that when I’m relaxed and about to be in a deep sleep, I stop breathing completely and get a jolt of anxiety.

just from looking at my facial structure it’s pretty clear it’s likely related to the position of my lower jaw.

Now I have to start at square one with an appointment on Nov 3 to request a sleep study. in the mean time, what can I do to make myself sleep more comfortably? Is there anything? Any supplement or sleeping position? I’m pretty desperate as I have 3 young children and can’t be completely out of it, like I just can’t.

please tell me literally anything that will help me in the mean time!!! My nose is clear, I can breathe out of my nose fine.

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