1. < Sleep Health
Profile picture for ariza9110

Can Upper Airway Resistance Syndrome be so debilitating? What to do?

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.

Interested in more discussions like this? Go to the Sleep Health Support Group.

Profile picture for dlydailyhope
dlydailyhope | @dlydailyhope | Mar 27 5:01am
In reply to @ariza9110 "its pretty hopeless since they are not listening" + (show)
Profile picture for ariza9110 @ariza9110

its pretty hopeless since they are not listening

Jump to this post

@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.

REPLY
Profile picture for taylor05
taylor05 | @taylor05 | Mar 28 8:06am
In reply to @ariza9110 "Hey I’ve been suffering from UARS (Upper Airway Resistance Syndrome), which is a form of sleep..." + (show)
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.

Jump to this post

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

REPLY
1 reply
Profile picture for ariza9110
ariza9110 | @ariza9110 | Mar 28 10:55am
In reply to @taylor05 "It sounds as if you really need to see a good neurologist as you're never get..." + (show)
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!!

Jump to this post

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

REPLY
Profile picture for taylor05
taylor05 | @taylor05 | Mar 28 3:32pm
In reply to @ariza9110 "Hey I’ve been suffering from UARS (Upper Airway Resistance Syndrome), which is a form of sleep..." + (show)
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.

Jump to this post

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.

REPLY
Profile picture for ariza9110
ariza9110 | @ariza9110 | Oct 31 9:39am

Hey, i have been suffering from uars for more then 2 years and lately it flared up and i feel extreme exhaustion and brain fog throughout the day and heart palpations and blood pressure drops with changes in posture, i tried cpap which did not helped me in the lower pessure and made my sleep worsier in the higher pressure, i also tried bipap (both from my own money thanks to "sleep medicine") which i cant tolorate and cant sleep with (i tried yesterday and was wide awake for almost two fricking hours with it) now i have another problem which i believe is possibly orofacial dystonia/tmj which is undiagnosed but it makes me not wanna even try mad plus it is expensive and wont be coverd by insurance for me, i found a sleep focused ent which is aware of uars and i thought about discussing with him the possibilty of doing srugeries but as i mentiond previously i have a undiagnosed problem with my jaw that im scared it could aggraviete so i feel really at lost since i am completely debilitated from how my sleep feels like right now...

REPLY
2 replies
Profile picture for gloaming
gloaming | @gloaming | Oct 31 12:14pm
In reply to @ariza9110 "Hey, i have been suffering from uars for more then 2 years and lately it flared..." + (show)
Profile picture for ariza9110 @ariza9110

Hey, i have been suffering from uars for more then 2 years and lately it flared up and i feel extreme exhaustion and brain fog throughout the day and heart palpations and blood pressure drops with changes in posture, i tried cpap which did not helped me in the lower pessure and made my sleep worsier in the higher pressure, i also tried bipap (both from my own money thanks to "sleep medicine") which i cant tolorate and cant sleep with (i tried yesterday and was wide awake for almost two fricking hours with it) now i have another problem which i believe is possibly orofacial dystonia/tmj which is undiagnosed but it makes me not wanna even try mad plus it is expensive and wont be coverd by insurance for me, i found a sleep focused ent which is aware of uars and i thought about discussing with him the possibilty of doing srugeries but as i mentiond previously i have a undiagnosed problem with my jaw that im scared it could aggraviete so i feel really at lost since i am completely debilitated from how my sleep feels like right now...

Jump to this post

It sucks having to deal with several things that start knocking wheels off the bus. All at once.

This is one of those elephants that you have to set your jaw, bite down, and start grinding away at it one step at a time. Git 'er done. It might take a whole year to get you back to where you can sleep well for maybe 6 hours, but it is possible.

You need a good sleep specialist who specializes in both sleep disorders and with obstructed airway. You need to be properly fitted with a machine that will treat you and help you to relax and to fall asleep. Even so, not every sleep-impaired person can use a CPAP machine or an ASV (adaptive servo-ventilator). The other thing is that at apneaboard.com we routinely recommend RESMED machines over the others because their driving software is more responsive to the way humans want to breath. If you haven't gone there yet, please consider going to apneaboard.com and reading in. Find some threads in the column of titles of all the zillions of posts by people who are desperate for help because their providers/suppliers have run out of ideas or just don't care because they've already sold you a machine that may or may not be right for your apnea.

REPLY
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | 5 days ago
In reply to @ariza9110 "Hey, i have been suffering from uars for more then 2 years and lately it flared..." + (show)
Profile picture for ariza9110 @ariza9110

Hey, i have been suffering from uars for more then 2 years and lately it flared up and i feel extreme exhaustion and brain fog throughout the day and heart palpations and blood pressure drops with changes in posture, i tried cpap which did not helped me in the lower pessure and made my sleep worsier in the higher pressure, i also tried bipap (both from my own money thanks to "sleep medicine") which i cant tolorate and cant sleep with (i tried yesterday and was wide awake for almost two fricking hours with it) now i have another problem which i believe is possibly orofacial dystonia/tmj which is undiagnosed but it makes me not wanna even try mad plus it is expensive and wont be coverd by insurance for me, i found a sleep focused ent which is aware of uars and i thought about discussing with him the possibilty of doing srugeries but as i mentiond previously i have a undiagnosed problem with my jaw that im scared it could aggraviete so i feel really at lost since i am completely debilitated from how my sleep feels like right now...

Jump to this post

Hello @ariza9110, You will notice that we merged your post with the following discussion that you started late last year so that other members who have been following your story can get an update and hopefully offer some suggestions from their own experience.
-- Can sleep apnea/Upper Airway Resistance Syndrome be so debilitating?: https://connect.mayoclinic.org/discussion/can-sleep-apneauars-be-so-severedebilitating/

I'm glad to see that you have already reconnected with @gloaming who has provided some great suggestions. As @gloaming mentioned about the ResMed machines, I got rid of both of my Dreamstation CPAPs when they had the recall and bought a ResMed AirMini with my own funds and have found it seems to work much better than either of my Dreamstations did. I definitely like the apneaboard.com site as there is some really good information and support.

REPLY
View MoreView Less
Please sign in or register to post a reply.