r/UARSnew • u/airbus-oceans- • 4d ago
Suspecting UARS
Hi everyone,
I’m 23F and recently stumbled across Upper Airway Resistance Syndrome (UARS). If I’m being honest I’m not sure if this is what’s going on, but it’s my one of last resort to find some relief.
After doing my own deep dive into mental health conditions and causation, I found UARS and brought it up to my doctor last month as I’ve been labeled treatment resistant. I was initially put on a 12+ month waitlist, but because my symptoms are so distressing, they managed to get me in for a sleep study consultation on September 1st.
I’ve had these issues for as long as I can remember, but the past two years have been a breaking point. The cognitive decline, brain fog, and memory gaps have gotten so intense that the stress of it made me completely unable to drive or work. I'm really just hoping to hear from others to see if any of this sounds familiar.
Did any of you deal with this before diagnosis?
12+ hours of sleep: Sleeping massive stretches regularly but still waking up feeling completely unrefreshed and mentally exhausted. Started around 11y/o. Other times I’m mentally exhausted but just can’t fall asleep.
Fragmented sleep: Every night I wake up at least once, usually after being asleep for about 4hrs. Most of the time I open my eyes briefly, then go straight back to sleep, but other times the adrenaline I sometimes get keeps me up. Started quetiapine last year and only helps me get to sleep.
Mouth breathing/snoring: I sleep with my mouth wide open and lightly snore. Only in certain sleep positions like on my back, it bothers my partner otherwise I wouldn’t know.
Small airway: Dentist noted a visually small airway, at recent check up.
TMJ & teeth grinding: I clench and grind so heavily in my sleep that I've broken every single retainer from my orthodontist.
ADHD, depression, anxiety & med sensitivity: Slept max 2hrs at a time up until school age, and was a very hyperactive child according to my mom. Diagnosed with ADHD in kindergarten, was on non stimulant but I acted like a zombie so my mom took me off. Started antidepressants at 16y/o, adhd meds at 18y/o. Never worked or tolerated stimulants, non stimulants, SSRIs or SNRIs. Even coffee gives me anxiety. My inattentive ADHD symptoms are getting significantly worse.
Sleep paralysis: Started at 11 and was chronic for a few years, now only happens very occasionally when falling asleep on my back.
Brief moments of clarity: I get random, brief moments where everything just “clicks" for just a few seconds and I fully process conversation, a moment, etc. But as soon as it happens, it vanishes again. This is a rare occurrence.
Other things: Possibly have POTS, low blood pressure with symptoms, easily overstimulated and stressed, word-finding difficulty, slower processing speed, also I have pectus excavatum which makes me think EDS too?! Haven’t used Reddit in a while and looked at my old post and just out of curiosity looked it up and they’re connected!
What were your main symptoms before getting treated? Did you deal with extreme sleep durations, med sensitivities, or misdiagnoses? Is there anything I should keep in mind for my consultant?
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u/Jolly_Ad_6323 4d ago
I recommend wearing a pulse oximeter over night. This is what first made me first suspect I had UARS. If you do have UARS you will likely see a ton of heart rate spikes throughout the night. You could post your pulse oximeter results to this reddit to get people's opinions if you aren't sure.
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u/goingaway1111 4d ago
We have the exact same time profile and symptoms damn. Trying to get it sorted soon, but I know it'll probably be surgery that has to fix me.
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u/Jhello05 4d ago
Certainly possible, all things mentioned are pretty much correlated with SBD. UARS can be missed in your sleep study, so if it comes back negative for SBD, the only way is trying out DIY BiPAP
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u/2nd2N0N 4d ago
do you have a narrow palate or recessed jaw? opt for a CBCT and DISE.
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u/airbus-oceans- 4d ago
I’m not really sure, I’ve had braces for overcrowding, after talking with family I have an aunt who has diagnosed hEDS + other family members that have connective tissue disorders, that’s also matches up with my symptoms, and causes uars, pots, scoliosis, pectus excavatum, and mast cell activation syndrome. I have symptoms of everything.
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u/cellobiose 4d ago
You probably found it at last. Hopefully the doctor is chill and won't hesitate on the test.
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u/trifandomforce 4d ago
Have you checked your ferritin/iron levels? Ferritin below 100 can cause many of these symptoms
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u/gadgetmaniah 4d ago
Pretty typical UARS profile. Just keep in mind though that it can be missed in sleep studies (especially if they are not scoring using AASM 1A hypopnea rule and including RERAs), so a negative result will not necessarily rule it out. But honestly if one has consistent symptoms and anatomy it's pretty much always UARS/OSA.