Can sleep apnea/Upper Airway Resistance Syndrome be so debilitating?

Posted by ariza9110 @ariza9110, Sep 21, 2024

so I have been suffering from what I suspect to be sleep apnea/uars for more then a year, my symptoms where fatigue and brain fog which improved a lot when I slept on my side, since I had a dental work 4 months ago I developed a problem with my jaw/tounge (which I strongly suspect to be Oromandibular dystonia) where it feels like my tounge presses hard on my palate and feels like it doesn't fit in my mouth and and and it feels like my jaw shifted also I experience choking sensation when lying on my back, since this problem started my symptoms became severe, I sleep 10 hours every day to wake up with extreme fatigue and extreme brain fog, also I developed orchastatic hypotension, I stopped working since it started and this days even watching a YouTube video or writing/talking lefts me exhausted because of how severe the mental fatigue is, I have a in lab sleep study in 2 weeks from now but I started cpap on my own, It feels like I dont sleep at all and since it started for some reason I started dreaming way more, lately I became depressed and suicidal over this and wanted to know if sleep apnea/uars can be this severe? thanks.

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Profile picture for ariza9110 @ariza9110

its pretty hopeless since they are not listening

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@ariza9110
It may be good to get new doctors and take someone with you to appointments to help you advocate for yourself to ask your questions, review your symptoms and get answers/options for testing/treatment.

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Profile picture for ariza9110 @ariza9110

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.

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It sounds as if you really need to see a good neurologist as you're never get relief if not. Good luck to you!!

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Profile picture for taylor05 @taylor05

It sounds as if you really need to see a good neurologist as you're never get relief if not. Good luck to you!!

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do they exist? from your expreince, because i feel like giving up on life at this point.

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Profile picture for ariza9110 @ariza9110

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.

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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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