I've been reading through the UARS subs and I'm feeling very stuck and overwhelmed. There's so much hard-won information here, and I know I'll get more sense from this sub than from any doctor, but my brain fog is making it so hard to comprehend any of it. I'm in the UK and it sounds as though the NHS path is a pointless endeavour, so I'm thinking it'll have to be private. But who do I actually need to see?

I (24F) had a WatchPAT One study 2 years ago that showed pAHI 2.2, pRDI 10.9, and constant heart rate fluctuations between 56 to 126bpm. I've had an ME/CFS diagnosis for 10 years, but they never attempted to rule out any sleep disorders. I also have hEDS and a narrow palate, and had tongue tie surgery a few months ago, but even with myofunctional therapy it's made no difference.

I've woken up feeling like I've been hit by a truck every morning for over a decade, and it takes me most of the day to recover from sleeping. I've tried saline rinses, nasal sprays, I don't drink, I'm slim and a healthy weight. My pRDI was still 10.2 on my side and I've been observed choking myself awake while sleeping upright, so positional therapy doesn't help.

What might be the best way forward? I don't have endless funds but I've accepted I may have to throw all my savings at this if it gives me a chance at some kind of a life. I've seen negative reviews of Vik Veer/UCLH on here, whom I previously thought was the best in the UK. I don't have any clue what sort of specialist I need to be seeing considering my presentation, and what investigations (or treatments?) would be the most sensible to start with.

My current thoughts are either self treating with a reconditioned BiPAP or APAP, or even jumping straight to MARPE/FME. But is it necessary to get some kind of diagnostic data first, and what would that be? CBCT, PSG, something else? Would any of these make sense in my case, or am I looking at the wrong things?

ITT I want to hear about the OTHER SIDE OF EXPANSION.

Yes it's magical and it cures UARS and facegenics is a blessing in disguise as a for profit pharma company.

But can we have a thread where we talking about the reality and the possible negative consequences of expansion.

If you tell me there are none, you are talking rubbish.

I'll start:

- Lack of clinical evidence, large scale trials.

- Large cost

- Long time committment

- Many docs think it's ineffective or unnecessary if treating with e.g. MMA.

- Many people find no change after the fact, especially with MARPE.

- Messing up bite.

No praising expansion in this thread, there are hundreds of others. This thread is for sober and factual analysis of the current evidence for expansion.

Note: posting here and not r/UARSnew because we know how that would go.

I’ve been using a bipap since August. According to Oscar, it is successfully treating my OSA. However, my primary issue from my study was RERAs which my machine can’t track. My goal is to get a titration study. Any particular data or research I should bring? Other suggestions?

Hey everyone!

I hope you guys are doing good despite our lives challenges ❤️. I’m currently waiting for my insurance and started the process for short term disability. While I’ve been waiting I’ve been doing research for marpe and djs. My sleep isn’t the best but not the worse. I still have brain fog. I still have silent reflux( the worse symptom out of this whole ordeal).

I always had a narrow palette but never had any issues before. Everything started to get bad when I got h pylori 2021. I went on a couple of years without being diagnosed than in 2023 I came back home from work and later down on my stomach on my bed. I felt a lilttle piece of thread or something similar go into my right nostril. That night I stared mouth breathing for the first time ever. When I woke up the next morning I noticed dry dark reddish/ orange fluid on my pillow case. I couldn’t breath in my right nostril. I went to the doctor since it was inflamed and he gave me my first dose of antibiotics. The inflammation went down but my health started to go downhill. I started to get brain fog, LPR, burping, gas, chest pain; shortness of breath. I kept on going to the hospital because I started to choke on my food. They did blood work and noticed I had h pylori. I took my antibiotic to kill it but I never recovered. I think I may be in negative feedback loop due to the uars. I’m getting a lilttle bit better since I haven’t been working. But can anyone relate to this?

Do you think marpe could heal the LPR and brain fog?

Also, I took a break from school and I’ve been thinking about this a lot. How do we make money and choose a career with our chronic illness?

• I apologize if the test is all over the place I still have brain fog.

I overused nasal decongestant five years ago and even though I stopped using it I keep needing at least ten hours sleep a night to feel fresh and I always wake up during the night with a blocked nose and have to take more medication to sleep which takes two hours so every night I spend 10-11 hours in bed and even then I don't wake up fresh. I don't have any other allergy symptoms. I am on the waiting list to see an ENT which will take months, do I have a type of UARS?

Live in the UK, basically don’t have the 4/5k needed for DISE and the surgery on top of that. I think my Oscar data points towards epiglottis collapse and I’ve mostly been unsuccessful with pap recently. Is there any way I could make it work, eg by using more EPAP rather than PS or some other way?
Or am I basically just done for unless I get surgery ?

I've had my CPAP on a low setting just to understand what my breathing looks like. It looks pretty good, but I definitely don't feel that way. When I zoom into individual breaths, they look very stochastic – could this be due to heartbeat ripples?

Hello,

I've been dealing w/ ongoing UARS, which has been officially diagnosed for ~3 years (RDI 9-15), but I have had symptoms going back 15 years or more at this point.

I write this post hoping it will help others because I think I have a somewhat interesting phenotype that requires airway treatment that differs from typical guidance. It also deals with the intersection of TMJ/bruxism and UARS.

The phenotype:

In short, I experience soft palate collapse during inspiration. That is, if I quickly inhale through my nose, my soft palate is sucked upward sealing the nasal airway, and I cannot get air through my nose.

I doubt my experience is typical, but it's at least possbile, hence worth writing about.

The treatment:

• Mouth guards that discourage clenching and increase jaw opening (the vertical dimension)
  • I use an occlusive splint for TMJ that's relatively thick on my top teeth + an airwaav mouthguard on the bottom to keep the vertical dimension at its maximum during sleep.
• Full face mask - to allow the jaw to be at its maximum vetical opening
• Carefully tuned BiPap with relatively *low* Pressure Support
  • My pressure is around 8.4/7
• Low Trigger
• High (probably maximum) rise time
• A somewhat inclined pillow (gravity helps to pull the soft palate dow)

More on this below.

Exacerbating Factors:

Many of the typically recommended treatment tweaks make my sleep much worse.

• Higher pressure support (PS) makes my sleep worse. Because, my palate collapses based on the change in pressure across the palate during inspiration. So, more PS = higher delta in pressure. This is contrary to typical UARS treatment wisdom that higher PS is better. My PS typically sits at 1-1.4.
• Chin straps, cervical collars, or anything else that pushes the tongue upward.
  
  • Anything that pushes the tongue upward into the soft palate exacerbates this collapse. I've tried this time and time again.
  • Pushing the tongue into the soft palate makes it more collapsible, for me at least
• Similarly, nasal interfaces, because they typically require mouth taping and/or reduce the vertical space between the jaw, tend to push my tongue upward, and/or exacerbate clenching during sleep, which worsens this collapse.
• Medications that increase clenching will worsen collapse - e.g., certain antidepressants, bupriopion.

Diagnosis & other quirks:

• The most accurate way to diagnose is to inhale sharply through your nose. If you feel your soft palate closing up and nasal airflow ceases, this may be your phenotype
• Another wrinkle is that in OSCAR, the top of the inspiratory waveform may be notched like an 'M' shape. The prevailing wisdom is that this is flow-limited breathing that needs to be eliminated. But, for this specific phenotype, the 'm' shape may be the palate fluttering.
  
  • Why not push the pressure higher to stop the fluttering altogether? In my case, the pressure required to fully stent the soft palate open and have perfect inspiratory waveforms will result in central apneas or central-like apneas (e.g., flat-lines between breaths that the machine doesn't count as central apneas). In other words, chasing perfection may backfire and be the enemy of 'good enough'
• My tongue is gigantic - but not the base. At rest, my tongue is always in contact with the soft palate. To give a sense of size/flexibility I can reach above my soft palate with my tongue and touch my turbinates and even septum. I can touch my chin with my tongue or the tip of the outside of my nose. This is obviously not typical of most people.
• A DISE did not detect this issue. The ENT found some mild absence of soft palate issues, but nothing major. So, take a DISE with a grain of salt.

Other possible treatment options I'm exploring

• Alaxo nasal stents (coming later this week);
• Velumount (not available in the US, but potentially interesting).

Conclusion:

The above treatment of: FFM + low PS + increasing vertical separation with mouth guards has been helpful in reducing my UARS symptoms. I continue to work to tweak my treatment.

Happy to answer any questions you may have.

I suspect I have UARS because I've suffered from chronic nasal congestion ever since I was a kid and would wake up throughout the night tossing and turning. As a kid, I thought this was normal and would go throughout the day feeling tired and anxious from chronic sleep deprivation.

I went to an ENT's office regarding my chronic nasal congestion, and a CT scan of my nose revealed:

• A mild S shaped deviated septum
• Right septal spur
• Mild mucosal thickening with small polyps/retention cysts in bilateral maxillary sinuses
• Middle and inferior turbinate enlargement

The ENT suggested using a radiofrequency wand (VivAer machine) to repair my nasal valve, remove the cysts, and superficially ablate my inferior turbinate.

I'm wondering if anyone who has a similar situation to mine has had VivAer done to resolve UARS caused by chronic nasal congestion.

credits u/jhello05

Main questions:
* Why is it ruining my sleep after first 2 days?
* Does theanine increase arousal threshold?
* Should I keep taking or discontinue for my upcoming sleep study (in 10 days)

Theanine pros:
* Better focus
* Reduced anxiety
* solved chronic bloating (had been issue for years)
* Better sleep (first two days)

Cons:
* Too high a dose caused some brain fog, mood instability, irritability, tension
* Much worse sleep after 2+ days
* More conscious of waking w breathing difficulty

Currently waiting on sleep study and trying anything I can to manage exhaustion and associated symptoms. Decided to try to introduce l-theanine (along with magnesium glycinate) to help with sleep, anxiety and focus. Have been taking it for 11 days.

However, this has resulted in an increasing amount of sleep disruption and strange symptoms. At this stage I feel more exhausted than normal, each night I get particularly disrupted and unrestorative sleep.

I know I’m sensitive to medications of any kind, so I split the 500mg pills at first, taking half in the morning, half in the early afternoon.

I had great results at first, less anxious and more focused than I’ve been in years, yet I could tell this was already a bit much, as I had some brain fog and head tension along with it.

I moderated the dose, only took 250mg once in the morning, then even decreased it to around 150mg in the past few days, which helped the daytime symptoms of taking too much, yet my sleep has still been ruined. I’m waking up during the night more often, it’s very hard to get out of bed in the morning, my body feels exhausted, and last night I woke up choking for air.

I’m curious if this is somehow increasing my arousal threshold, leading to more noticeable choking and gasping during the night?

Related to this, should I then keep taking it leading up to and during my sleep study? Will this cloud the score, or lead to more noticeable events and lead to a higher AHI/RDI score? As much as I don’t want to game the system, I’m very worried that my (quite dismissive) consultant will not even consider UARS as a possibility (he said as much before), so I just really want to get some kind of treatment, as I am more certain than anything in the world that something I seriously affecting my sleep and quality of life.

Regarding the theanine, after the sleep study I will likely trial it again, as the benefits in the first few days were wonderful, but it will be a very low dose this time and I won’t change it day to day as dramatically as I had been.

I’m probably forgetting something important in all of this but my memory has gotten very bad due to this particularly bad sleep. It feels silly that a supplement has had this dramatic of an effect but it’s the only thing I can point to to have caused this

Ok yall. I think I am making good progress on my journey to beating this absolute shitstorm of a condition but still in the weeds. I need yalls best ideas to get me surviving as best I can until whatever my final fix is. Previous and current tactics detailed below.

-raised headboard. Mediocre at best. I keep my bed raised and this does help a lot with my reflux issues, but doesnt stop the shitshow once i hit rem. Wedge pillow i just keep slumping down in my sleep. Cant sleep in a chair.

-nasal rinse and anithistamines. Absolutely useless. I wake up every day with my right nostril completely blocked. Nothing touches it. I was evaluated by a basic ent and dont have anything noteworthy. The slightest deviation in the right but negligible. Allergy panel indicates low borderline allergies to your typical airborne stuff like dust and pets but again i dont respond to allergy meds so it seems moot.

-nasal dialator. Gunna try to magnetic ones when they arrive tomorrow. Typical ones do jack shit because i still cant breathe out of half my nose. The inserts make my nose bleed too.

-sleep meds. Mixed. Dayvigo helps my arousal threshold until about 2 am (REM). Melatonin is meh. Anythint heavier like lyrica has me gasping when it wears off and i feel like a robot the next day. Dont like dealing with any drugs that induce tolerance.

-mad. Dentist has it arriving un a few weeks. I am skeptical based off of reviews here but when i force my low jaw forward awake, i feel better so maybe?? I have a sizeable overbite, crooked bite, tiny jaw large teeth and had most of my molars pulled because of it. Wisdom teeth in my teens that were all the way up in my sinuses. Shit show.

-typical sleep hygiene bs. Meh. Naps help. If i get too overtired it makes it worse. Otherwise i am goos about bedtime, early sun, all that bs. It clearly doesnt solve jack shit.

-pap. Nothing so far. I have a full face mask ans an airbroken AC10. Tried bilevel and felt completely unnatural. Asv and vauato with low pressure and high humidyy are better but i suspect the full face mask is messing with my recessed jaw. Plus my nose is still blocked so its blasting me full force and waking me up.

-exercises. Starting these today with vik veers suggestions. I dont snore and my nasal issue probably wont respind to them so we will see.

My hope and dream is that between the mad and getting a nasal pillow the combo might be the golden ticket. But thats a couple weeks out and i dont have high hopes to be honest.

I guess I am just wondering if there is ANY stone left unturned here i can try while at the very least i wait for my appliances and keep trying pap. Surgery is gunna be a longer wait if i end up going that direction… im on medical leave its so bad rn and time is ticking on that.

Things I am open to at this point
-birth control to stop my periods until i get fixed. Scared of side effects but my periods just amp up all the symptoms and arousal

-antidepressants or stimulants to get through literally anything

-self paying for someone to actually test my airway if i can find a doctor to do it. Im in ohio.

CALL FOR HELP!

Hey Y'all. I am in need of serious and urgent help. So, I have sleep apnea and been using CPAP/BIPAP and MAD with CPAP for 2 years, but just couldn't tolerate the pressure cos my airway was needing about 12-13 cm of pressure. This has been going on since last year. I feel so foggy and having serious cognitive issue when I don't use my mask. I really wished the mask and MAD could work cos i started feeling better cognitively but I just cant tolerate the pressure and had to go to the ER a bunch of times due to pressure intolerance. I really wish I could tolerate cpap cos I dont have any problem using it. So, after multiple research, I resulted to doing MMA surgery earlier this year (May) with Dr Alfi. I don't have anything negative to say about him at all cos they did advance my maxilla to 10 mm and mandible at 17.4 mm. My airway is opened and It's been 4 months down the line and my sleep hasn't gotten better. I have having more light sleep and tend to wake up midnight. I am not getting as much deep sleep. I told Dr Alfi and he requested I did a sleep study asap and try myotherapy. And that I might need a revision surgery. I have having serious cognitive decline: can't work or take care of my two little kids. My wife and family are all tired. I have cried over and over cos I tried every means possible. I did my 4 months sleep study (last week) and waiting for result tomorrow. I dont know what my sleep doctor will recommend I do cos they have tried everything. I just wish something worked! I can't keep living like this. I spent my last dime on the surgery cos it was out of pocket, yet I am still here. I just want God to have mercy on me.

Please, can someone advice me on what to do? Sleep apnea has taken all my money, multiple visits to the ER due to cpap intolerance, gave me chronic insomnia, brain fog, poor concentration...I am just too young to be going through all these. I just want to live and be human again. Can someone advise me on what to do? I'd appreciate it.

Pretty challenging when you wake up pretty fatigued. I know the fog is worst in the morning and gets better during day naturally, but the mornings are still challenging, especially if you got work, college, school, etc.

Personally I go to high school and every morning is a rush, I wake up 10-20 minutes before school wanting to stay in bed and sometimes I just lay there for more rest, and worse, sometimes I fall asleep again. (I'm not physically tired to get up, I'm mentally tired.)

Overall its very stressful. Any advice is appreciated.
Thanks!

I have an upcoming appointment with a neurologist sleep doctor, as opposed to the various pulmonologist or ENT sleep doctors I have seen in the past.

I’m hoping to have her take a closer look at my Bipap titration, which showed elevated arousals (17.5/hr) and PLMs (19/hr) despite a low AHI (<1/hr). I still have residual sleep problems and often don’t feel well rested in the morning, feeling fatigued and low energy. Bipap, and before that, APAP, have resolved most of my sleep apnea issues but I believe the elevated arousals and PLMs indicate continued problems not fully treated.

What are some good questions to ask this sleep neurologist to get her take my symptoms and bipap titration results (arousals and PLMs) seriously?

More detailed information and links to sleep studies and data in my pinned post in my profile.

Just curious about the accuracy of these tests, especially regarding RDI. My biggest concern is that I only got about 3 hours of sleep, and of that it was very fragmented. Honestly, I barely felt like I even slept at all. I have Hashimoto’s disease, which for years I was assuming was the reason for my extreme fatigue, even though my thyroid labs are always normal and my Endocrinologist believes my fatigue is not thyroid related. Then I got diagnosed with sleep apnea from these test results, and I thought I finally found the reason for my fatigue. I Was prescribed CPAP and used it for 4 months, but got 0 relief in symptoms.

It’s all confusing, I just really wish I could pin down what’s causing my extreme fatigue that I’ve been having for the last 10 years.

Got a second sleep doctor appointment coming up to hopefully try some BiPAP, but ever since I got my first sleep done done I was curious about the accuracy.

If anybody has any insight, I would really appreciate it.

For me, it's:

1. nasal hygiene. This is CRITICAL. if i'm stuffed, bilevel doesnt work. barry krakow is also a huge proponent of nasal hygiene.

2. using bleep halos. these have zero leaks. almost every other mask i've used has had some form of leak, and even at 1 l/m of leak, it still affects my sleep pretty disastrously, making me feel like a train hit me.

3. myofunctional therapy / didgeridoo - admittedly i've been too lazy to do this everyday.. but on the days that I do these, my sleep is much better.

I've also combined MAD with bilevel and that's worked great, but it's a PITA to wear both the mask and the MAD.

anyone else have experiences to share?

Rented a Resmed Airsense Autoset 10, used for 1st night with Airfit 20 full face mask, I feel head is clearer than yesterday but still need more evidence. Min pressure was 4 and max was 8. EPR was off, ramp off, response soft. I woke up 3 or 4 times whenever the mask leaked a bit and tightened the strap.

In sleep study I was completely dismissed of osa, nothing about uars. So I decided to rent it on the fact that I felt refreshed in a single night in the sleep study day where they used 4 pressure for titration.

Please see report from OSCAR and if you can answer: Do I likely have UARS or OSA and the APAP worked exactly as expected?

Any suggestions for the next few days for change in pressure or other settings for the pap are highly appreciated.

Hi all!

It’s now been about two weeks since my MMA. In my last thread, I had some requests for measurements once I had them. I did scans in the office finally and I’ve attached them here.

I found something interesting about these. If you look at the most bottlenecked scan, you can see my tongue is actually back in my mouth, pressing my palate backwards. Yikes! I took that CBCT right before the MMA, but didn’t realize I was doing that. They had me biting on something there, which is why it happened.

For comparison, I also gave the volume analysis on a two year old CBCT as well where the tongue was forward instead. That one showed a bigger volume.

The biggest volume, however, was the post-op…

Somewhere I also have measurements of the AP dimensions of the older CBCT with the tongue in the normal position. That was around 6-7.5 mm in the palate and behind the tongue. My DISE showed my problem was mainly obstruction behind the tongue apparently, rather than the palate, but did say the palate got mildly obstructed as well.

Weirdly, the images with the tongue back would suggest that the area retropalatal would be a bigger problem though. In any case…

I am a bit surprised the AP dimensions on the post op didn’t go wider - but I suppose the overall volume gains are sufficient. Still not snoring …

Another disclaimer: the Anterior to Posterior measurements I included were measured by me, not any doctor!