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Can sleep apnea/Upper Airway Resistance Syndrome be so debilitating?
Sleep Health | Last Active: Sep 22, 2024 | Replies (14)Comment receiving replies
Hey
I’ve been suffering from UARS (Upper Airway Resistance Syndrome), which is a form of sleep apnea, for the past two years. However, about a year ago, I underwent a lot of dental work that I believe triggered what I suspect is Oromandibular Dystonia (OMD). my symptoms are constant tightness in my jaw and tongue, with my tongue sitting abnormally inside my mouth and pressing against my palate. This leads to a choking sensation because of the abnormal positioning and tension in my tongue.
Since then, my UARS symptoms have worsened drastically, to the point where I’ve become bedbound and completely non-functional. The issue is, I’m struggling to get a diagnosis for OMD because my symptoms aren’t visibly obvious, when i took stimulant med they became visble but still I fear that I’ll be gaslit by doctors, as I’ve had this experience many times before.
I’m also finding it difficult to get doctors to acknowledge the severity of my UARS, even though it’s leaving me sleep deprived and zombie without the ability to function (at it current severity since omd started) I’ve tried nasal sprays with some success, but they haven’t provided lasting relief.
What adds to my frustration is that even if I manage to get a diagnosis for OMD, the correlation between OMD and UARS isn’t something that is well known, so I feel extremely stuck. It seems llogical that if my jaw and tongue muscles arent working propely it could affect breathing and thefore sleep breathing
at this point i feel extremely hopeless and depressed, im writing this currently while im having a flare in my suffering and i feel like i havent slept in two days and suffer massively, its unberable and i cant see how can i get help. thats all i had to say and sorry if i wrote bad as i said im very tired.
Replies to "Hey I’ve been suffering from UARS (Upper Airway Resistance Syndrome), which is a form of sleep..."
@ariza9110
What specialists have you been seeing and working with? It sounds like you need a team working together to properly diagnose and treat you.
Are you working with an ENT, pulmonologist, neurologist and dentist and have you had a swallow test? Have you had a MRI of your head and cervical spine to check nerves/vessels and inflammation? Have you had an updated sleep study and do you use a cpap regularly at night?
I wonder if an appliance worn in your mouth would help with tongue placement and help with breathing.
It sounds as if you really need to see a good neurologist as you're never get relief if not. Good luck to you!!
Yes, they do! I have a specialist at John Hopkins and I have had many ischemic infracts (strokes) because I have Connective Tissue Disease and it's caused small vessel disease plus a magnitude of other issues.. He's been great in finding what's going on abd helping me as much as possible of course as tweets no cure for what I have.
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Roger all that!
While the two problems may be complementary, the could possibly be just coincident. Or, if they are only coincident, but also one exacerbates the other, you're no further ahead...and you need help with both, thanks very much!
I think you should deal with a neurologist who can at least validate your OMD, but you also need a polysomnography, or if that is already done, and verifies your UARS, you need PAP therapy that can help.
When I first started learning about my own severe OSA (obstructive sleep apnea), and people on line were complaining about dry mouth, mouth breathing, and not feeling better after what the machine claims was sufficient hours of use (but not necessarily of useful therapy), the coaches told us to learn to place our tongues at the roofs of our mouths and to leave it there, practicing often during the day until it became the tongue's go-to position. Didn't work for me, and the result is that I tape over my mouth with the mask on. But...you're already there! Maybe your version of it is overdone, though, and actually is intrusive. Hard for me to figure this out.
I feel for you. Being housebound is bad enough, but bedbound? Yeesh...!
You may need to avail yourself of a sleep clinic to learn how to isolate your throat and tongue, but only with your brain doing it, like ignoring it, and then try to sleep normally with the proper PAP setup.
It might be worth a shot for you to spend some time at apneaboard.com forum. It's a free site, safe, tons of gurus there, and someone might know of someone, or you'll get an actual patient, who has some familiarity with your circumstances and can offer some help. I am there, have been for about seven years now. At the top black marquee, top of the page, you'll see 'OSCAR', which is a freeware diagnostic app you can download and poll your PAP machine for some really good info that most patients don't know anything about...even that it is available. Your machine may have a SIM card, or you can get one and install it. You remove the card from its little vestibule on the side of the machine's shell, and insert it into a reader or into a SIM card slot on some older laptops and PCs, and you can see all sorts of information that may shed some light on your machine's treatment of your UARS. I think it might help, and at least give you something to do. 😀