r/UARS

Before i found out i had SDB/UARS i was suicidal (very close to committing tbh) and since i found this subreddit my life got way better. This is why i try to help as many people as possible. Someone else in this subreddit is doing the same and i love to see that. Its a very cruel "disease" especially if its moderate-severe. I am still not healed but BiPAP was the only thing that helped.

So, my advice: if you are a beginner and you are reading this, skip all the gadgets (TRD, velumount, boil & bite MAD, sleeping sitting...) and get a (used) BiPAP. It will take weeks to months finetuning it. Dont waste time and try the most effective thing first ! I hope this helps someone

Hi everyone,

I'm hoping someone can point me in the right direction because I'm struggling to find a BiPAP machine in the UK.

I've recently started using an auto CPAP after a private sleep study, but after looking at my OSCAR data and speaking to a sleep advisor, I think my issue may be more UARS than classic obstructive sleep apnoea. My AHI is quite low, but my RDI is much higher and I still wake up exhausted despite using CPAP.

I'm being referred to the NHS sleep clinic, but as most of you probably know, that could take months. I'd really like to speed things up by trying a BiPAP myself to see if it makes a difference, rather than waiting ages while feeling awful every day.
The problem is I can barely find anywhere that sells or rents BiPAP machines. Most places only seem to have CPAPs, and the few BiPAPs I have found are around £2,000, which I just can't afford just yet.

Does anyone know:

•	Where in the UK I can rent a BiPAP for a reasonable price?

•	Anywhere that sells refurbished or second-hand machines?

•	Whether there are any older models that are still good but much cheaper?

•	Which model you'd recommend for someone who suspects UARS (rather than needing ASV or anything for central apnoea)?

I've seen machines like the ResMed AirCurve 10 VAuto mentioned a lot, but they seem almost impossible to find.

I'd really appreciate any recommendations or advice from people who've been in a similar situation. Thanks!

Is it possible to get confident as a 26 y. o. man, if he gets enough interoral volume to defeat airway issues at night like apnea and UARS?
Because right now I can’t go out and enjoy life, my cortisol levels are too high, Dopamine and testosterone are too low.

Did someone made the same experience?

Hi everyone. I’ve been considering for a while getting a DISE (drug-induced sleep endoscopy) in relation to having surgery for my sleep apnea + UARS, but after doing quite a bit of research online and on forums like this one, I’ve started to question whether it even makes sense.

The whole point of a DISE is to examine the airway during sleep, but from what I’ve read, the drug-induced state achieved during a DISE is far from natural sleep. I’ve heard several ENT surgeons say that in this drug-induced state, everyone appears to have sleep apnea because the airway collapses in an unnaturally strong way.

I know that some experts, such as Vik Veer (ENT surgeon in London), only use the medication used in a DISE to let the patient fall asleep, and then wait for the drug to wear off so that the patient transitions into more natural sleep, allowing them to see things as they really are. However, this type of specialized DISE is not available in my country, which is probably also the case for many of you.

My question is therefore whether it is even worth getting a DISE if the collapse points identified are not the same as in natural sleep. How would it then ever be possible to plan effective surgery based on it?

Do yall have any suggestions as to where I could get a referral cuz I need a referral for a FOV CBCT scan and I’m choosing one place in Stockholm to get my CBCT scan

Thank you, thank you, thank you UARS Reddit people!! If I could hug every person on this thread who's ever posted, I would.

I've had sleep issues for at least 25 years. First sleep study was 20 years ago, mild sleep apnea, several micro-apneas per hour, but the concerning part was 31 micro-arousals per hour. I asked the lab what that meant. They didn't know. Brought it to Stanford Sleep Clinic. They didn't know either. So it sat untouched for years.

About five years ago I had another study, an at-home one, still just "mild apnea" (AHI of 7 that time, 5 the first time), no arousal data this time. Got a CPAP, didn't want to deal with it for such a low number so didn't use it.

With increasing exhaustion, I started using it a few weeks ago. I wake every few hours normally and having the mask on made it harder to fall back to sleep. So I have never made it past four hours with it on. 

AI helped me explore the situation and mentioned UARS. Desperate for insights, I came to this thread.

This is where I discovered OSCAR and the idea of capturing data from the CPAP. Of course a doctor looks at the AHI, all looks good and then never mention this.

Well my magical UARS peeps, I finally saw the flow limitation cycles and the flow rate waveform is a textbook crescendo pattern, jagged lines, plateaued tops, brief recovery, repeating over and over.

Everything clicked in that one picture!  Suddenly every downstream health issue makes sense and the behavior stuff tied to a hypervigilant nervous system, all of it.

Anatomy-wise, a lot of this makes sense. Large tongue (I can touch the tip of my nose with it, and I have a big nose). Small jaw with an inconsistent bite, upper jaw overlapping the lower in some spots, even in others, under in others. Doctors over the years have mentioned small nasal sinus openings and a small throat. I still have my tonsils too.

Now I need to convince doctors this is real and that CBT-I isn't the fix they think it is.

I'm guessing an ENT is the first step, but the bigger interventions (MSE, MMA) are a lot to sit with. I have emailed my sleep doc to see if there are adjustments I can make within the CPAP or if I can get a biPAP. Would love it to be this simple but not sure I see myself ever fully settling with a mask on my face, 

For those further along, what do you suggest at the optimal first few moves based on my anatomy and what you have learned on your journey that you wish you knew sooner?

Thanks again! Immensely grateful for this group. 

I'm almost 5 months post-op 17mm advancement. My improvements are noticeable but MINOR... not enough to live a normal life yet. Still classic stuff: fragmented sleep, thick brain fog, sleep deprived fatigue....

PSG at 3 months: RDI dropped from 32 to 16, AHI dropped from 15-20 range down to 5 so far (PSG done at 3months post op.)

My spontaneous arousals are still dozens per hour: 35/hour. <-- My guess is there's some residual respiratory events in there? maybe some neurological misfires form years fight/flight resp. events?

I've heard some people feel noticeably better at 3 months, 5/6 months, 7 months, 9 months and even beyond 12 months?

THIS FEELS CRAZY SLOW... IF AT ALL. Timeline patterns anyone post MMA????? Looking for hope lol.

I have no appetite, extremely nauseous dizzy, I quit my job recently, even the thought of walking to the kitchen and getting water feels too much. I have headaches behind my eyes and feel paralyzed when I wake up. Anxiety is through the roof,I’m not truly sure if I have uars but in my watchpat I had 12 RDI and almost 0 AHI. I just got a bipap but can’t fall asleep w it yet. I tape my mouth every night now and keep my tongue in the roof of my mouth just fine.

Honestly it feels like I’m slowly dying. My nose and eyes are running, my throat hurts (not normal illness sickness but just long term feeling slightly sick. I’ve gone to urgent care many times and my primary and they say nothing is wrong…

Has anyone’s symptoms truly been this bad? I’m honestly extremely concerned with the state of my health. I’m only 25F.

I went to ent and he said he doesn’t think my nos is causing sleep issues, but they did say I have perforations and enlarged turbinates

I’ve had sleep issues ever since a Covid infection and subsequently long covid for 3years now. Have diagnosed autonomic dysfunction etc. To put it simply; Covid infection really did a number on my nervous system and blood vessels. I also have hyper-mobile connective tissue disease as well.

It’s possible I’ve always had a little apnea (likely from the hypermobile CTD) but after the infection I noticed on the oximeter my oxygen levels were dropping frequently at night. I’d have my lungs burning in the morning and head felt like it was being squished. Being housebound/bedbound by this point I decided to self-treat with a CPAP. It was amazing, it made a huge difference with my daytime fatigue and morning wakings. I still had central apneas events nightly but found with the right settings I no longer had any OSA (which was already mild to begin with) Woot.

Well fast forward 3years now, my central events seem to be increasing about 18% compared to last year. They happen pretty much the first 2hr block of sleep and then intermittently throughout the night according to Oscar. It’s always worse during barometric pressure changes or when I’m in a deep health flare (which I’ve had a few of them lately). So it definitely is an intermittent pattern to it that likely wouldn’t be able to be reproduced in a sleep study and being mostly bedbound not like I can manage a sleep study right now anyways but I’m pretty confident they’d say - ‘it’s mild’

So I am thinking - perhaps I need to just try the ASV next. Last echo shows no heart issues so not concerned there but I keep reading that it’s not advisable to self-treat with the ASV but where I live there is no insurance for these machines so you just need to purchase it out of pocket either way - which I’m fine with.

Has anyone else just made the switch on their own? Any suggestions?

Hi, I am trying to do a lab study to get a more accurate reading of RERA's and other sleep data. I was using chatGPT to research if I could get my insurance to cover this and it informed me that insurance companies typically would not cover an in-lab sleep study unless you first do a home test and it's findings are inconclusive. I did a WatchPAT test like 2 years ago with Lofta which showed mild sleep apnea and UARS like numbers. I have been on CPAP/BIPAP since but it has been ineffective in treating my issues.

So I am worried that my insurance will not cover a lab study and wondering if anybody can offer any insight about this? I am going to see a doctor who is known for working with UARS so I am hoping he will make a strong case for getting an in-lab study done to get more accurate readings. Anyway I won't do a lab study unless my insurance company first approves an authorization request but trying to find out now what my changes may be like.

I appreciate any insight anybody can offer.

Thanks!!!

I have a narrow palate and a tongue and have UARS as well. Will palate expansion and tongue tie cure the problem or I have to sleep lifetime with cpap?