New (UARS) -- lots of questions

Hi all! First post on this forum, so hello!

Yesterday I was diagnosed with UARS, and today I purchased a ResMed S10 Aircurve VAuto from secondwindcpap to get the ball rolling.

Background info
I'm 20, normal weight, nose breather only, and do not to my knowledge snore. I forgot to ask for a full report of my sleep study after my diagnosis, so I can't provide any of the data at the moment. My dad has sleep apnea and a CPAP, although he's not very good about using it. My symptoms for the past 2-3+ years have included difficulty falling and staying asleep, secondary anxiety and depression, ADHD (diagnosed when I was ten), and relentless fatigue. Daily medications: slow-release stimulant for ADHD (I've tried plenty of times to find a difference in my sleep on versus off my meds -- no dice), multivitamin, Trazodone, melatonin.

I began to suspect I had a sleep disorder last year -- at first I thought it was just insomnia due to mental illness, but as I got my anxiety and depression under control my sleep quality remained unchanged, even though I was giving myself plenty of time to sleep every night. In mid September I reached out to a sleep clinic to have a study done, and as of yesterday the sleep doctor concluded that it's probably UARS, so here I am!

I've had plenty of time to do my own research prior to the study, so I'm familiar with the basics of sleep apnea / UARS and the importance of treatment. I jumped for a bilevel machine as soon as I got my prescription because I'd heard from a few different sources that they're usually more effective for UARS patients (because it can provide pressure support and monitor flow limitation, or so I've heard) -- and also because secondwindcpap had an awesome discount on this model. I have yet to order a mask because I'm waiting until I go home for Thanksgiving break (I'm at university) so I can get my dad's help... and yours!

With that:

Questions
1. Since I purchased this machine out of pocket, how should I go about self-titrating? My prescription says 5-10cm, but I think they're assuming I'll be using an APAP. Is it any different for a bilevel?
2. I got to briefly try on a couple masks at the clinic (ResMed AirFit Pro Nasal Pillows [XS] and ResMed AirFit N20 Nasal mask [S]), and I think the N20 fit me better with fewer leaks. Is this a good choice / should I be fine buying only one mask? I hear a lot of people opting for the nasal pillows; is there a reason for that or does it not matter?
3. Tips specifically for UARS -- the vast majority of information I've seen regarding PAP treatment was for people with sleep apnea. The two conditions are pretty close, so I'm able to derive plenty of useful tips from others' experiences... Still, are there any important differences I should know about? Any different lifestyle choices I should be making? And since AHI probably won't be as relevant to me, what other objective measurement can I use to gauge progress?
4. What are the most important maintenance tips to help my machine last as long as possible?


Thank you in advance for your help! I'm very grateful to be here!

Was your sleep study done at home or in clinic?

Welcome to the forum.

zan wrote: ↑

Sat Nov 23, 2019 3:04 pm

And since AHI probably won't be as relevant to me, what other objective measurement can I use to gauge progress?

Unfortunately there probably won't be a lot of data available from the machine that you can use to help guide you.
You are going to have to go more on how you feel subjectively because the your numbers will already be low. These machines are designed more for OSA related flagging and not so much UARS. RERAs or respiratory even related arousal numbers might help a bit but I stress the might part because they don't always tell the whole story since to know for sure if anything is a real arousal related item we have to be able to know for sure if there was ever sleep to be aroused from and the machine's can't tell if you are asleep or awake. They simply don't have that technology. At best what they are saying when they do flag a RERA is that your breathing looks like the breathing of someone with an arousal related to some sort of airway issue. So the absence of many RERAs doesn't really mean much...now if you see a lot of RERAs flagged then that usually points to something causing arousals so it does often indicate poor sleep quality. It just can't tell you exactly what caused the poor sleep quality.

zan wrote: ↑

Sat Nov 23, 2019 3:04 pm

1. Since I purchased this machine out of pocket, how should I go about self-titrating? My prescription says 5-10cm, but I think they're assuming I'll be using an APAP. Is it any different for a bilevel?

Not really any different in terms of self titrating except with a bilevel you will have more options available in terms of comfort and it hurts nothing to have more options available. More ammo for the battle is always a good thing.

Mask choice preference is highly individualized....you want to be comfortable first and foremost. Start with the mask you feel more comfortable with. You can always try something else later if you get curious.
From therapy standpoint though....shouldn't really matter.
Sleep is going to be your number one goal...good quality sound sleep with least amount of chance of being awakened from annoying little mask issues.

Geer1 wrote: ↑

Sat Nov 23, 2019 5:26 pm

Was your sleep study done at home or in clinic?

In a sleep lab, both PSG and MSLT.

Pugsy wrote: ↑

Sat Nov 23, 2019 5:47 pm

You are going to have to go more on how you feel subjectively because the your numbers will already be low. These machines are designed more for OSA related flagging and not so much UARS.

Knowing that now, and while also aware that there is no "standard" timeline to expect results... well, can I expect results in similar time as many PAP users with SA? :p As in, is it fair to expect improvement within a few months of treatment (assuming I'm being consistent, and actively making whatever adjustments I need along the way)?
I guess I'm mostly looking for reassurance that I'm on the right path. Thanks for answering.

I would say you are on a reasonable path with an excellent machine. Obviously no one can guarantee that PAP therapy will work to resolve your UARS or help you feel more rested, but it is well worth trying.

You would probably benefit from downloading Oscar, which is open-source, community-developed software that provides you with valuable reports generated from the SD card in your machine. Oscar is here: https://www.sleepfiles.com/OSCAR/

As Pugsy says, the help you'll get from these data is somewhat limited compared to the help people get with obstructive apnea. But you will be able to see possibly relevant information about flow limitations, and you will be able to zoom in to observe how regular or otherwise your flow rate is as you breath in and out.

As you get started, please return with questions. One quick tip: before you start using the machine at night, try setting it up during the day and using it while you read or watch TV. It's a somewhat weird experience to get used to, and your mind would probably appreciate having a chance to start adapting before you're lying there in bed, in the dark, and trying to get to sleep.

About the settings of "5 to 10": You might want to start with a fixed pressure, just to have one less thing going on at night that disturbs you, though you will probably want to open it up at some point. And the VAuto provides the option of Pressure Support, which is great. Your machine will give you higher pressure when you inhale and drop the pressure down when you exhale. You'll set your EP (fixed or range) and then add PS (fixed or range) to get your IP. I would suggest starting with a fix EP of 5 and adding a fixed PS of 3 or a little bit more. You may well want to raise both values later on, or make either or both a range rather than a set number. Other settings should just be left as default for now.

Thanks for your response, the pressure suggestions were especially helpful!

zan wrote: ↑

Sat Nov 23, 2019 3:04 pm

Hi all! First post on this forum, so hello!
1. Since I purchased this machine out of pocket, how should I go about self-titrating? My prescription says 5-10cm, but I think they're assuming I'll be using an APAP. Is it any different for a bilevel?

Yes, it is different.

5 is very low, so I'd try setting
minepap to 6
ps to 4
maxipap to 25
leave the rest of the settings at default.
come back, and post data after a night's sleep.

It's a reasonable path for sure. And I hate to say it but it's essentially the only path right now for UARS that doesn't involve drastic measures that really aren't proven to help UARS patients.

Start learning how to keep a very detailed log about your sleep quality and how you feel and any variables that you might notice that might play a part in how you feel.
Sometimes the least little bit of information or change can end up being an eye opener.

If history repeats itself though....you will likely end up needing more pressure than the machine wants to give you if you use auto mode because it seems like most UARS patients end up needing higher pressures than the machine wants to give because they are designed to deal with OSA and if you don't have OSA then they don't always do much.

palerider and Miss Emerita: since your suggestions conflict a bit, do you think it's more important to just get used to the CPAP feel (as per Miss Emerita's suggestion to minimize complexity) or to try calibrating my machine for treatment (as per palerider's suggestion to start with bilevel)?
(Apologies if I misinterpreted either of your posts.)

Pugsy, thanks for the heads up. I'm desperately hoping the VAuto will be enough, but only time will tell.

Toss a coin as to which way you want to start out. There's merit to both the suggestions and here's the beauty of it all...there's absolutely nothing stopping you from trying all sorts of combinations of settings in an effort to find something that lets you sleep better.

Good quality sleep is your first goal....without sleep none of the other stuff matters much.

Hi Zan, yes, you are spot on in describing two somewhat different approaches. As Pugsy says, you get to pick, and if you don’t do well with one, you’ve got another. Plus if you’ll post charts, the experts here can help you modify your approach depending on how things go.

zan wrote: ↑

Sat Nov 23, 2019 7:49 pm

palerider and Miss Emerita: since your suggestions conflict a bit, do you think it's more important to just get used to the CPAP feel (as per Miss Emerita's suggestion to minimize complexity) or to try calibrating my machine for treatment (as per palerider's suggestion to start with bilevel)?
(Apologies if I misinterpreted either of your posts.)

Pugsy, thanks for the heads up. I'm desperately hoping the VAuto will be enough, but only time will tell.

Good question, Do you go with the newbie, or the person with years of experience... your choice

Well I would suggest trying both approaches because for some UARS people a fixed pressure (and it's usually higher than auto adjusting machines will want to go) is what they end up needing. Sometimes the machine won't go to where it maybe needed to be gone to because the usual stuff that drives the pressure is absent from UARS patients.

I wish I could tell you it will be easy and quick to find what you need, and while not impossible, it doesn't seem to be as easy to figure out optimal UARS pressures as it is typical OSA treatment pressures for most. A Pes titration study with cpap is rarely done and that would be needed to know an optimal starting point. We can get there self titrating but it takes time and a lot of trial and error and a bucket load of patience.

The machine available data will give you a potential starting point though.
BUT....big but....you have to be able to sleep first and it's not always so easy as it sounds. We got tons of cpap patients proving that sleeping with a mask and machine is in itself a potential disruptive factor.
Heck for the first 3 months of my therapy I woke up a gazillion times a night just to feel the mask and check to see if the machine was on and I had no issues I thought with the mask or pressures. It was simply the newness of everything that messed with my sleep in general.

All good advice, thank you. palerider, I usually evaluate suggestions by plausibility: sometimes even newbies have good ideas.

Tonight my dad is letting me try his CPAP just to get a feel for sleeping with it, I'll post again if anything noteworthy comes of it.

zan wrote: ↑

Sat Nov 23, 2019 3:04 pm

4. What are the most important maintenance tips to help my machine last as long as possible?

Before I forget about it, is there anyone who can answer this question?