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[Pressure] UARS treatment and clueless
#1
Question 
UARS treatment and clueless
Greetings to everyone here! This is my first post as a longtime lurker and I come to you with frustration and looking for some assistance as I have struggled and am dealing with frustrations right now.

I am 25 years old and have been dealing with what I suspected to be UARS since college. Meaning I started noticing these symptoms my freshman year of college. They have progressively gotten worse over time and I could never figure out what was wrong with me.

Long story short I was diagnosed by a dentist who did a cone beam scan that I have a very narrow airway and long soft palate that is causing me to have UARS while I sleep. I have gone and taken sleep apnea tests prior and came back negative. I am currently undergoing treatment with this dentist to increase my airway and working on getting laser treatment to decrease the size of my soft palate.

For the time being, I have been trying to self treat with a Aircurve 10 VAuto as the everyday symptoms have been driving me crazy. Fatigue, lightheaded/dizzy, bad brain fog, muscle soreness, anxiety, depression, blah blah blah. Could go on forever. 

So far the self-treatment has left me frustrated and wanting to give up as I feel I have made no progress and so I have been in a battle with this machine for months as I go back and forth between giving up and wanting to commit and tackle this beast head on.

I have now decided I need to give this my best effort and get this figured out.... and I am hoping some of you may be kind enough to try guiding me a bit better.

I have realized that my first mask may have been to big for me as I would deal with leaks and air hitting my eyes whenever the exhale pressure was too high. I have just gotten a smaller facemask today that fits better and I have tested to ensure no leaks.

The biggest issue I am experiencing is a feel short of breath or that my breathing has not been natural and that I am having to work overly hard to breath naturally with the machine. I have no idea if my pressure settings are too high, too low or just right. There are so many variables that go into this that I have been a bit overwhelmed. So here are my current settings on the machine:

Mode: VAuto
Max IPAP: 14
Min EPAP: 7
PS: 3
Ti Max: 2s
Ti Min: 0.3s
Trigger: Med
Cycle: Med
Ramp: OFF
Humidity has been on manual as auto was making it hard to breath with how humid it was with the full mask.

Most nights I have not been able to keep the mask on at all and I end up throwing it off and hoping to trial again the next day. Last night I did manage to sleep with it on for a few hours but my OSCAR results looked pretty bad. I will attach them here for reference, as I have no idea what they all mean.

   

   


I hope this is able to help. I am really hoping for some guidance and steps I can take to tackle this beast as the sleep doctors have been 0 help to me in trying to get a machine prescribed to me. Trying to self treat and could use a little help.

Thank you to everyone in advance!

Justin
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#2
RE: UARS treatment and clueless
post a redacted copy of your sleep studies. A full copy including the charts and tables. While I'm sure they say you don't have a problem we look much deeper than that.
look at the organize link in my signature. It is much easier to read the screenshot than the report pdf.

the 22nd you may have been tucking your chin, thus causing high AHI. do have other nights with similar results and the cluster of obstructive events?

If you have UARS PS is your friend, why do you have PS=2? IMHO it should be 3 or 4 and maybe higher assuming UARS. PS treats flow limits, both the flagged ones (FL chart) and those that are not.
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#3
RE: UARS treatment and clueless
Do not have any other nights to post with data for now.

I have the PS at 3, I increased to 4 to test for tonight.

Not sure what you mean by posting the redacted results but I’d be happy to if I can understand better what your asking for.
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#4
RE: UARS treatment and clueless
Do not include your name, address, phone, mother's maiden name, or you routing and account number or someone may see it and empty your bank account or something like that.
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#5
RE: UARS treatment and clueless
you were probably issued a summary of any sleep test you had. call and ask for a copy of the complete report and post it here after removing or covering up all personal info. in the meantime, if you have it, post the summary minus personal info.
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#6
RE: UARS treatment and clueless
Not sure if there is usually more info that they can provide but here is what I have from that sleep study.

   
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#7
RE: UARS treatment and clueless
mrsub, there may be other things involved but your report indicates virtually no apnea and your RDI isn't suggestive of UARS.

otoh, you did have periodic limb movement at the rate of 18.6 per hour with almost 3/hr waking you. quite possibly a/the root of your complaints. see your primary doc for something to help with the plm. little is known about this and in my experience docs don't want to deal with it so be insistent if you have to. there are several to many possible treatments so it will likely take some trial and error to find the one that works for you.
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#8
RE: UARS treatment and clueless
That is why I asked for this.
High RDI (RERAs/Flow Limits) and low AHI are the hallmark of UARS. Based on this sleep study UARS is not your problem.

And as sheepless points out PLM could be.

This begs the question, Why do/did you feel UARS was your problem?
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#9
RE: UARS treatment and clueless
Awesome thank you for the insight. Do you believe it can be a combination of the two? 

I have airway scans that show my airway is 1/3 the size it should be. I snore crazy loud every night and wake up feeling like I did not sleep at all the entire night. Right now I am doing a palate expansion with my doctor and I get significant teeth clenching marks on my mouth piece.

If there is more information I need to gather to help try and provide better info to you guys here I will try and gather it.

I just took a quick nap with the VAUTO for an hr and feel a bit more refreshed after waking up.
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#10
RE: UARS treatment and clueless
I have always had issues with breathing even during the day. The feeling of trying to get a big inhale of air is always hard.

I have all the symptoms of UARS:

- Bed wetting late into childhood
- Muscle Soreness and aches
- Forward head posture
- TMJ
- Teeth clenching and grinding (No stress that I know of to cause this)
- Severe brainfog
- Libido issues
- Low testosterone issues (started TRT to address)

This is some of the side effects that I have that are all in correlation with UARS. I will also point out that this sleep study was also taken in 2018, not sure if that matters now.
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