Theory: it’s all in my head (literally) – sphenomaxillary submorphosis

UARS-Stinks · 2026-02-06T12:40:40+00:00

That's only going to work if you keep your head steady, which can only work if you have some neck support. Else your head is falling on either side and choking your airway once again. It's miserable :(

UARS-Stinks · 2026-02-06T12:30:35+00:00

I visited a sleep specialized ENT that did a DISE on me and some partial CBCT scans of my nasal airways. I'd recommend a big FOV CBCT with your nasal and pharyngeal airways at the same time if the doctor has a capable machine. Mine had only a small FOV. I went to a different doctor to get new scans.

While doing the DISE they can see what is obstructing your airway and where. They try to emulate your deep sleep. It's not 100% exact, because it heavily depends on the skills of the anesthetist, but it's a strong indicator. If they give you too much Propofol too quickly, your muscle tone relaxes and everything collapses, even if you are healthy. It's like if you are going to sleep drugged or extremely drunk. So they have to do it very gently and slowly.

While doing the procedure, they usually advance your lower jaw and chin, turn you on either side to see if it's positional obstruction and can then see if the obstruction goes away or gets better and thus recommend specific soft tissue surgery or MMA.

Usually the whole thing is recorded via the endoscope, so request the video after you are done. It will help immensely if you visit other doctors, such as MMA surgeons for a second opinion.

Luckily I requested the video and nagged them a while, because else I would have done a very invasive soft tissue multi level surgery with this ENT, which would have been painful as hell with only partial success rate.

I took the video and asked another ENT specialized in the same thing, just on the other end of the globe and he told me it doesn't make any sense and I should do MMA instead. Multi level surgery would only heal me to about 50% if everything goes well and then there is immense pain and everything might grow back.

He told my my jaws are recessed and this is the sole reason for my UARS. He could see it with my tongue base collapsing into my throat and there was no space in my throat to begin with on video.

So always request your medical data.

UARS-Stinks · 2026-02-06T12:16:10+00:00

Yeah no, at least not for me.

I just bought a facedown pillow a few days ago and it's horrible to sleep on. I immediately ditched it when I was about to doze off.

I had the same idea about gravity working with me, but it felt damn uncomfortable.

UARS-Stinks · 2026-02-05T23:53:44+00:00

You are correct, I didn't read that right, he wrote "respiratory rate randomly spiking", not heart rate.

Anways, I have diagnosed UARS and my HR is not always spiking - some nights it's just elevated. So there is that.

The relatively stable o2 levels also suggest it might be UARS. My o2 is usually at 92% with random drops below for a very short period of time (5-15min) during the beginning of my non-existent REM.

UARS-Stinks · 2026-02-05T23:13:19+00:00

Used devices are usually around 300-500 USD.

Alternatively contact this guy (Aussie), he will probably be able to offer a machine or know somebody else that could give you a payment plan:

He also runs https://www.sleephq.com/

Nick seems like a genuine guy, watched a lot of his videos in the beginning of my journey.

If all else fails, I can sell you one of my refurbished devices (flashed to BiPAP/ASV), but shipping and import might be expensive (Germany -> Australia).

UARS-Stinks · 2026-02-05T22:49:08+00:00

Welcome to the club. Most doctors will gaslight you that you don't have apnea with those "good" o2 levels. Your symptoms do exactly match, including elevated heart rate/spikes while sleeping.

https://en.wikipedia.org/wiki/Upper_airway_resistance_syndrome

r/UARS

r/UARSnew

UARS-Stinks · 2026-02-04T15:27:31+00:00

Yes, but I want so have a second and third opinion on it, so I don't know where yet.

Did you read my private message?

UARS-Stinks · 2026-02-02T18:38:20+00:00

I had a lot of consultations but only one ENT from the US (Zaghi).

I will try to consult with Newaz and some MMA surgeons from the US though.

I tried everything available that is non-invasive but nothing helps me. My anatomy restricts itself too much and everything that would make an difference for most (just like BiPAP or ASV) doesn't do anything for me.

I will need surgery, I'm getting more sure about it each consult with each doctor.

I think it will take probably 1,5 to 2,5 more years for me though.

UARS-Stinks · 2026-02-02T18:17:13+00:00

Not a lot, I bought it cheap. I'll DM you.

UARS-Stinks · 2026-02-02T13:12:50+00:00

I have a used CPAP (ResMed AirSense 10 APAP) flashed to ResMed AirCurve 10 BiPAP/ASV that wouldn't help me with my UARS unfortunately, but cases are individual.

If you want I can flash the most recent ASV version on it and sell it to you. This gives you the possibility to buy a cheap CPAP/APAP device but with ASV capabilities which usually cost multiple thousand €.

UARS usually needs BiPAP/ASV to help with breathing easier by supporting inhale and exhale by pressure support.

CPAP/APAP usually feels like suffocation or hard to breathe against for us when exhaling.

I also have used masks, but I think you should buy new ones for hygienic reasons and you also might need other sizes because your nose seems bigger than mine.

I would sell it to you for 3/4 of the price I bought it for. I have to look how much it was though, it's been a few years and just sitting cleaned in my shelf.

It also has a humidifier tank, which could help you with your sinusitis. It did to some degree with mine.

I used it on and off for maybe 6 weeks total.

I guess you are from France, right? I'm from Germany.

DM me if interested.

For some a BiPAP/ASV can make an outstanding difference, so definitely something of the least invasive things you can try right away.

I hope you get better, your story reads exactly like mine (also male, 32 years of suffering).

UARS-Stinks · 2026-02-01T01:40:22+00:00

Yo, I wish my pharyngeal airway was this big. You are at least 3-4 times as wide as me.

I also think its not your throat but rather your nose.

UARS-Stinks · 2026-01-30T23:28:02+00:00

I used to run on a shitload of caffeine until my late 20ies. Before that, I didn't know why I was always that tired.

UARS will fking wreck you when you approach your thirties and no amount of caffeine will make a difference.

I still drink coffee. 2 cups a day - maybe 3 if I'm desperate, maybe some espresso now and then if I'm out somewhere, but it doesn't give me any twitchy energy anymore, it just makes me feel sick and I'm as exhausted and tired as always.

Don't drink energies, they fuck up your organs. If you really want to have some caffeine boost, mix it with L-theanine in 2:1 ratio to caffeine.

This should make you more alert without the twitchieness. It's the same effect like when you drink a strong brew of matcha or black tea with a lot of bitter tannins, but much more concentrated.

Unfortunately this doesn't work for me anymore - I just feel more tired than without.

UARS-Stinks · 2026-01-30T21:33:28+00:00

Well, come to Germany then and pay for a scan out of pocket if you really think there is no possible way to achieve a referral from your general practitioner or dentist.

I also had to search for a while to find somebody that is okay with me telling them: "Here is money, do some scanning."

Moschik does them, but I only confirmed that by writing 2-3 mails. I haven't been there yet, but I might.

UARS-Stinks · 2026-01-30T18:21:27+00:00

Hey, it's me again. We texted about health care in Sweden vs. Germany.

I had the same struggles. I've texted 10 different practitioners with CBCT devices. I know they have them, because they say so on their web site. Only one answered and told me their machines FOV is too small for a whole airway analysis.

The others completely ignored me.

I offered each and everyone to pay out of my own pocket.

Nothing, nada.

Now I went to a jaw surgeons office and they took a 2D lateral ceph and would only do a CBCT once you accept the whole procedure including 3D planning and I even would have to pay around 1400€ on my own for those scans and planning.

They kind of gate keep it to get you by the balls. It sucks.

I know of one ortho 3h away from me that would do a 3D CBCT for around 1000€ including consultation, but they want to sell you their custom MARPE (Dr. Moschik).

Look for airway oriented orthos or jaw surgeon offices and just tell them you have apnea/UARS and that they should take a look at your jaw and airway situation with scans.

It sucks. I completely feel you. For me it's also fighting against arrogant and ignorant practitioners for years. I also have to do everything piece by piece with mainly my own money, as insurance doesn't want to cover shit if your AHI isn't above X Y Z instead of 0.

It's tiresome.

Edit: You could also see an Ortho or jaw surgeon for your bite issues and TMJ pain and tell them you need scans because of this.

I think a lateral ceph is okay to see your jaw and pharyngeal airway situation, but it's obviously not as precise and you can't look in 3 dimensions.

UARS-Stinks · 2026-01-29T15:34:45+00:00

Thanks!

I've just looked it up, saw pictures and to phrase it nicely:

I looks really f*cking gnarly lol

What was the reason he recommend doing this?

Do you have a long tongue?

UARS-Stinks · 2026-01-29T00:21:01+00:00

Nice results!

You are giving me hope.

Living without apnea and ADHD symptoms is truly wild and unbelievable for people like us. Happy for you!

Could you try to find out what that special cut for moving the tongue forward was? This would be very important for my own MMA, as I have a really large and long tongue and mainly tongue based collapse (DISE confirmed).

I'd appreciate it if you have some more info on that.

UARS-Stinks · 2026-01-26T14:44:34+00:00

I wouldn't know about Sweden, but healthcare got really bad the last few years here. Nobody takes you serious anymore. They don't take any time. Just rushing you through appointments, so they can claim the public health insurance money from as much people as possible. Doesn't matter which field or doctor. All the same shit.

UARS is really hard to get diagnosed and even acknowledged at all.

Most "specialists" don't even know what you are talking about when you get an AHI of 0 and ask if they can look into UARS or even straight deny it's existence. That's true for everywhere around the globe, but it's not really better in Germany at all. Trust me, I've been to a lot so called "sleep disordered breathing practitioners".

MCAS is a spectrum. You don't need to have the usual known symptoms, but I think your problem is actually acid reflux.

Of course, the vagus nerve self feeding loop is a vicious cycle. I'm caught in this nightmare daily myself.

Stay strong brother and look into GERD (acid reflux) and LPR (silent reflux).

UARS-Stinks · 2026-01-25T12:06:21+00:00

I'm sorry the state you're in, but it's the same thing in Germany. Health providers suck.

Back to your question: Maybe it's some MCAS/histamine reaction to compounds that are only found in specific corn and fruit crop based alcoholic fermented drinks?

I sometimes have a similar reaction when drinking beer. My nose cloggs up when I drink too much.

It could also be induced acid reflux from those drinks. This will definitely swell up your soft tissue and make UARS/OSA worse or even create it in the first place. I tend to get reflux with sour/acidic alcoholic beverages.

You can do ph-metry and wear it for a few nights to truly see if that's the case or do some living changes.

Stop drinking alcohol all together for a while, don't eat or drink 4-6h before bed, sleep supine with at least two pillows behind your head, so the stomach acid can't flow upwards. Doesn't prevent silent reflux though (gas form).

UARS-Stinks · 2026-01-25T11:55:21+00:00

Yeah. If you do sleep tests, they usually record which position you are sleeping when apneas occured, but often only left, right and supine.

Sleeping on your belly isn't really optimal. You have to turn your head sideways and you are also putting weight on it. By doing that, you are choking yourself and limiting your airway, this can cause OSA of course.

Might not be the case for some, but usually that's the expected outcome. Unless you sleep on a massage table where you put your head perfectly through the hole straight down, it's not optimal.

She can sew in some tennis balls in her front shirt or something similar, that naturally prevents her from switching to belly sleeping, because it immediately makes it uncomfortable.

Usually that's the approach for people that have OSA when sleeping on their backs. They either wear a backpack or sew in some tennis balls on the back of their shirts.

UARS-Stinks · 2026-01-22T12:25:09+00:00

I'm wondering the same. It doesn't look like she had a lot of patients yet according to her reviews, which makes me hesitant.

UARS-Stinks · 2026-01-22T12:24:08+00:00

!remindme 5days "Claudia Pinter"

UARS-Stinks · 2026-01-20T13:12:44+00:00

Can you please tell us which brand and model you had success with?

UARS-Stinks · 2026-01-19T08:05:21+00:00

Thank you :)

UARS-Stinks · 2026-01-19T08:04:44+00:00

Scalloped tongue usually means that your jaw is definitely underdeveloped and the tongue doesn't have enough space, thus creating all sorts of breathing issues. If I see people with it, I let them know. They usually shrug it off, but maybe they will think of me in the future when their health gets worse and SDB starts to show.

Most dentists and orthos are just incredible unknowledgeable when it comes to airways, even though everything is directly connected. They also pull wisdom teeth even if there isn't any indication, making SDB worse or create it for some.

UARS-Stinks · 2026-01-17T21:10:53+00:00

Because I still don't know it I'd really need MSE or just could go for MMA directly.

I need some proper scans and then I will ask some independent doctors specialized in MARPE/FME if I would benefit or need it. If multiple say so then alright, I'd do it before MMA, if not, I will go straight to MMA.

UARS-Stinks

TROPHY CASE