Upright sleep posture produces remission

[notsurewhatswrong]

Hi all,

I'm new here and have been struggling for many years with what I now understand could be a primary sleep disorder, though my case is highly unusual. I've been working with various doctors but feel like none of them has a decent grasp on what's wrong. I'm hoping someone here can advise on my situation and suggest an appropriate direction.

Demographics/Background: Asian, male, age 28, United States. Have had extensive bloodwork over the past two years and all markers are within normal ranges. Two sleep studies in the past 3 years both negative for OSAS (very low AHI; oxygen saturation never dipped below 90%).

My realization that this may be a sleep problem started with an observation last year that sleeping upright (at about a 45 degree angle or greater) almost completely solves my problem. My quality of life jumps by about 5x; my symptoms practically disappear overnight. This replicated consistently on the several occasions that I tried it. However, I have not been able to establish a consistent habit of sleeping in an upright posture. I can sometimes fall asleep upright but will often shift during the night and wake up flat on my side. This has led me to consider other options.

I saw several ENTs. Two of them suggested that I may have UARS. On the advice of multiple ENTs, I just had a septoplasty, turbinate reduction, and tonsillectomy performed in early January to remove obstructions. So far, this has yielded some improvement in sleep but nothing close to adequate remission. There still appears to be considerable swelling of the soft palate and uvula, so my doctor advised waiting an additional month for improvements to sleep with decreased swelling, before considering CPAP.

Here are some observations and notes about my condition:

- Sleeping upright (>= 45 degree angle) produces significant remission of all symptoms
- I have some unusual form of generalized edema/swelling problem, possibly related to sleep issues
- Notice increased swelling of the mouth/face in the morning upon waking
- Nasal congestion varies throughout the day; correlated with facial swelling
- Severe headaches almost always correlated with facial swelling
- Hot showers cause generalized body swelling
- Jump scares (or other acute emotional stressors) cause noticeable acute facial swelling
- Swelling tendency diminished by improved sleep (in upright posture)
- Even small attempts at sufficiently intense exercise like weightlifting or running are destructive to sleep quality and QoL. All symptoms are dramatically worsened. Full recovery from increased symptoms takes 2-10 days. I have been unable to sustainably exercise for several years because of this. My belief is that something about the process of recovering from exercise (perhaps increased body temperature => swelling) worsens my existing sleep problem.
- Glasses sometimes feel like they’re causing nasal congestion (at the bridge)
- I experience variable finger swelling throughout the day. Sometimes quite noticeable. Feel like sausages.
- Swelling in the face can vary dramatically within the same day
- I believe the swelling may be a dynamic factor in upper airway obstruction while sleeping
- Unfortunately, poor sleep also increases the swelling tendency (it seems to be a result of or related to systemic inflammation). It’s possible that I’m caught in a vicious feedback loop.
- Have ruled out allergic/mast cell explanations for swelling
- Swelling certainly seems to be modulated by cortisol. Perhaps a result of autonomic dysfunction?
- I do experience most symptoms of chronic sleep deprivation, though they can vary throughout the course of a given day: moodiness, fatigue, irritability, depressed mood, difficulty learning, forgetfulness, lack of motivation, inability to concentrate/“fuzzy” head, increased appetite.

I'd appreciate any advice on what I'm likely experiencing. Could this be UARS? Something else? What's the likely mechanism at fault, based on the above? Why is it fixed by the upright sleep posture? Is there an established methodology to test for UARS in the absence of traditional indications for OSAS? Are there any specific recommended doctors or clinics in Southern California or New York City that might be able to help me? Thanks!

[Pugsy]

Welcome to the forum.

Read up on the Pes procedure used during sleep to help determine if UARS is an issue. It's not done in all labs though.
http://www.sleepmedicinecenters.com/Sle ... ceSyndrome

Is there an established methodology to test for UARS in the absence of traditional indications for OSAS?

[babydinosnoreless]

Hi all,

I'm new here and have been struggling for many years with what I now understand could be a primary sleep disorder, though my case is highly unusual. I've been working with various doctors but feel like none of them has a decent grasp on what's wrong. I'm hoping someone here can advise on my situation and suggest an appropriate direction.

Demographics/Background: Asian, male, age 28, United States. Have had extensive bloodwork over the past two years and all markers are within normal ranges. Two sleep studies in the past 3 years both negative for OSAS (very low AHI; oxygen saturation never dipped below 90%).

My realization that this may be a sleep problem started with an observation last year that sleeping upright (at about a 45 degree angle or greater) almost completely solves my problem. My quality of life jumps by about 5x; my symptoms practically disappear overnight. This replicated consistently on the several occasions that I tried it. However, I have not been able to establish a consistent habit of sleeping in an upright posture. I can sometimes fall asleep upright but will often shift during the night and wake up flat on my side. This has led me to consider other options.

I saw several ENTs. Two of them suggested that I may have UARS. On the advice of multiple ENTs, I just had a septoplasty, turbinate reduction, and tonsillectomy performed in early January to remove obstructions. So far, this has yielded some improvement in sleep but nothing close to adequate remission. There still appears to be considerable swelling of the soft palate and uvula, so my doctor advised waiting an additional month for improvements to sleep with decreased swelling, before considering CPAP.

Here are some observations and notes about my condition:

- Sleeping upright (>= 45 degree angle) produces significant remission of all symptoms
- I have some unusual form of generalized edema/swelling problem, possibly related to sleep issues
- Notice increased swelling of the mouth/face in the morning upon waking
- Nasal congestion varies throughout the day; correlated with facial swelling
- Severe headaches almost always correlated with facial swelling
- Hot showers cause generalized body swelling
- Jump scares (or other acute emotional stressors) cause noticeable acute facial swelling
- Swelling tendency diminished by improved sleep (in upright posture)
- Even small attempts at sufficiently intense exercise like weightlifting or running are destructive to sleep quality and QoL. All symptoms are dramatically worsened. Full recovery from increased symptoms takes 2-10 days. I have been unable to sustainably exercise for several years because of this. My belief is that something about the process of recovering from exercise (perhaps increased body temperature => swelling) worsens my existing sleep problem.
- Glasses sometimes feel like they’re causing nasal congestion (at the bridge)
- I experience variable finger swelling throughout the day. Sometimes quite noticeable. Feel like sausages.
- Swelling in the face can vary dramatically within the same day
- I believe the swelling may be a dynamic factor in upper airway obstruction while sleeping
- Unfortunately, poor sleep also increases the swelling tendency (it seems to be a result of or related to systemic inflammation). It’s possible that I’m caught in a vicious feedback loop.
- Have ruled out allergic/mast cell explanations for swelling
- Swelling certainly seems to be modulated by cortisol. Perhaps a result of autonomic dysfunction?
- I do experience most symptoms of chronic sleep deprivation, though they can vary throughout the course of a given day: moodiness, fatigue, irritability, depressed mood, difficulty learning, forgetfulness, lack of motivation, inability to concentrate/“fuzzy” head, increased appetite.

I'd appreciate any advice on what I'm likely experiencing. Could this be UARS? Something else? What's the likely mechanism at fault, based on the above? Why is it fixed by the upright sleep posture? Is there an established methodology to test for UARS in the absence of traditional indications for OSAS? Are there any specific recommended doctors or clinics in Southern California or New York City that might be able to help me? Thanks!

Have they checked you for autoimmune angioedema , raynauds, psoriatic arthritis , RA and other autoimmune issues ?

[notsurewhatswrong]

Have they checked you for autoimmune angioedema , raynauds, psoriatic arthritis , RA and other autoimmune issues ?

Yes I've had a full rheumatology workup that came back negative. Haven't been directly tested for Raynauds. And also can't exclude 'idiopathic edema', which I suppose is the default diagnosis absent any other explanation.

@Pugsy Thanks! I'll look into getting that test done.

[kteague]

If you get the UARS test done, please do come back and let us know what you find out. Do you have copies of previous study reports? Maybe you could post those (minus identifying info) just in case there's a clue in the details. When one's sleep is not good so many of the body's processes don't function effciently. The worse I sleep, the worse my edema is. Before my OSA was treated I had a very swollen tongue. With treatment it resolved. Good luck going forward and finding your answers. It may be you have more than one contributor to your symptoms, but if you can rule some things out or in, it's a start in the right direction. At the very least, I'd be looking for glasses that don't hit the same spot on the nose to see if it helps. And keep that in mind if you do end up on CPAP as you select a mask.

[babydinosnoreless]

Have they checked you for autoimmune angioedema , raynauds, psoriatic arthritis , RA and other autoimmune issues ?

Yes I've had a full rheumatology workup that came back negative. Haven't been directly tested for Raynauds. And also can't exclude 'idiopathic edema', which I suppose is the default diagnosis absent any other explanation.

The reason I mention it, I was diagnosed with idiopathic angioedema and urticaria when I was young. It wasn't until I was in my 40's that I found an allergists who had specialized in urticaria. He searched for and found anti-ige antibodies in my blood (This is after having been told a rheumatology workup was normal). My mom had Rheumatoid Arthritis so was one of the first checks I had done and the one question I keep asking.

I have since shown up with other autoimmune markers including those for thyroid (graves) and asthma.
My ANA still shows normal.

I have had a Rheumatologist tell me I do have seronegative RA, or MCTD but another disagrees and says maybe not. So I don't know. What I do know is my fingers and toes and other joints swell and hurt like a ........ when the weather is bad.

I do know that my pap machine is allowing me to sleep better so that the other issues are a bit easier to deal with.

[musculus]

Can you try sizing up your tongue score based on this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5655544/

very likely UARS

[slowriter]

On UARS diagnosis, PES is one method, but I understand it can be pretty uncomfortable.

I was diagnosed with just a straight in-lab PSG sleep study. Diagnosis was based on relatively low AHI, but high RDI; in short, a high preponderance of RERAs.

There's also this study which argues that, with someone with an otherwise low AHI, you can put them on an auto CPAP machine, and if the pressure rises (the mean pressure of their subjects was ~7), that's "good enough" diagnosis.

[CarpeNoctum]

Hi...sorry you're having difficulty getting a diagnosis.

About the upright posture thing. Related to positional apnea. I know I can sleep upright with no apnea also. I use it to travel. Busses, airplanes and trains always have comfortable seats to sleep in.

So get yourself a good Barkolounger and you're good to go...if only it were that easy.
CN

[ChicagoGranny]

I have not been able to establish a consistent habit of sleeping in an upright posture.

Get a bed that elevates the upper body and the legs. With the upper body and the legs elevated, it will be impossible to roll into a different position. https://www.target.com/p/comfort-collec ... nk=sametab

[yrnkrn]

Try borrowing a CPAP for couple of nights to see using it results in remission of all symptoms similar to sleeping upright.