Kinda lost - UARS

Hi!!

I’m a newbie here and I’m trying to figure out what’s wrong with me. I’m French but currently living in Canada so I apologize in advance for any English mistakes I’m gonna make :p

I’m 33 yo, mom of 3 under 6yo. I’ve diagnosed with hypothyroidism for 18 years (or about). Besides Synthroid I don’t take any medication. I got diagnosed for hypothyroidism because I noticed that I was having trouble remembering things, at first my GP made fun of me and finally gave up and did the testing. For over decade I’ve been feeling tired, no energy, never felt rested when I woke up, libido completely off (I gotta say I never ever had any), woke up with headaches, difficulty finding my words or my thoughts and simply can’t remember things sometimes, mood swing, very little patience ... the list is long.
I reached out to my GP (another one) and explain that I was under the impression that I wasn’t sleeping well, of course at first we blame the fact that I’m a mom of small kids, but I requested to do a sleep test.
I waited over a year to be called for the test at home, I did that in October 2019. The pneumologist said that I don’t have sleep apnea, but something seems to prevent me from breathing at some point during the night. I have no issues with my nose but when I lay down I can’t breathe through it, only through my mouth. My tonsil were removed, my adenoids as well (twice) and I got a surgery for a deviated septum. Nothing seems qrong with my nose. My pneumologist advised me to do 3 nights with a cpap. I did that but wasn’t able to see if it was better or not.
She called me last week to suggest me renting a cpap for 3 months to see if it helps, she mentioned that we could do the hospital sleep test as well but she has patient that have been waiting for over a year already.
The thing is, my insurance won’t cover anything because « I don’t have sleep apnea ».
I’m debating between renting a cpap for a month (but how will I be able to set it up). Calling her (not sure I’ll be able to get ahold of her) to request the sleep study. Or both.
I received my initial sleep test’s results this week, if anyone can point out what it highlights because no one went through it with me. (I know it’s in French, but it should be pretty similar to any sleep test)

Bonsoir! We can help you get set up if you can get a machine - and we can help you about which one to get and where. There are people here very knowledgable about all that and I hope they show up soon, but while I understand about your insurance, can you afford something? There is a place called Secondwindcpap.com that has refurbished machines (in the US) but you should wait (sorry) for those others to advise on what to ask for, and some of them may have older machines they're willing to sell or give you for testing. There is also terrific free software we use here that you can download once you have a machine and if you follow instructions on how to post results of overnight sleep, we can help you interpret things and suggest where to go from there.

I'm from Mtl, but my French is now pretty bad as I haven't lived there for a long time... sorry, but your English is vrai vrai terrific!

I was diagnosed with UARS last Summer.

I think your doctor's suggestion to try PAP therapy for longer makes sense. It can take time to see improvement; not just weeks, but months.

My general view is the best machine for treating UARS is an auto bilevel device; specifically the Resmed Aircurve 10 VAuto.

Also good is an auto-CPAP like the Resmed Airsense 10 Autoset.

I bought my VAuto on the used market in the US, where it's possible to find them even cheaper than the average Autoset.

But as Julie suggested, secondwind would be a quicker and easier option, if more expensive.

I don't know your financial or insurance situation, and how much it would cost you to rent, but what you should do probably depends on those details.

If, for example, it were to cost you $100/month, then maybe better to just buy something used.

If you can rent a bilevil for a reasonable cost, that'd be a great option, because it would give you a wider range of setting options to test what works for you.

As for scheduling the sleep study: I don't know, that's a long time to wait. Can you schedule and just cancel in a couple of months if this goes well?

Thanks you for your answers.

@Julie, how nice to find another Montrealer!
I saw the tool you are referring too, OSCAR I believe. (I read the « to read prior to post » ) and I’ll make sure to use it once I get a machine.
I’m waiting to know how much it costs to rent one, I might be able to rent one for one or 2 months (I believe it’s going to be something like $150/$200 a month).
I’m not sure I can find a used machine for that low anyway :/

@slowriter is there a list of machine to consider?
So I can look for a few of them and see if I can get my hands on one.
I’m pretty sure I can always cancel the sleep study if needed.

The two I listed are the ones I'd strongly recommend, with preference to the VAuto if possible, which will give you more flexibility. I wouldn't consider others.

The direct secondwind links, to make this easy: Autoset and VAuto.

These machines are "gently used," but have warranties and support from that company.

I found a used dreamstation on a local group near me. It’s from 2016 and it’s affordable, cheaper than 3 months of rental ...
Do you know if it records the data on a memory card and if I have a way to send it to my pneumologist?!

I know it’s not the best but should I still see a benefit using it?

Aprilia wrote: ↑

Wed May 20, 2020 5:26 pm

I found a used dreamstation on a local group near me. It’s from 2016 and it’s affordable, cheaper than 3 months of rental ...
Do you know if it records the data on a memory card and if I have a way to send it to my pneumologist?!

Probably, but what specific model is it?

Look underneath for a large REF 000 number, e.g. 560 and let us know if possible what it would be...

Aprilia, I strongly recommend that you pass on a PR machine and get a ResMed VAuto. The PR algorithms are just nowhere near as useful for UARS, hypopneas, and flow limitations, and meanwhile the ResMed algorithms are as good as PR's for ordinary OAs.

With the VAuto, you can have greater pressure support than you do with the Airsense 10 Autoset, and this is often a help for hypopneas and flow limitations. Pressure support is the difference between inhale pressure (higher) and exhale pressure (lower).

Forum member LSAT sometimes has lightly used VAutos for sale. I got mine from him, trading up from an AS 10 Autoset, and I've never looked back.

I’m not sure which model it is but I’m going to ask the seller.

I wish I could afford a VAuto but I won’t at this time. I’ve been trying to get in touch with my pneumologist without success so far and I reached out to my insurance who said they’d cover 90% of a polysomnography with a maximum of $1000 ... so it’s already $500 out of my pocket whenever I’ll be able to have a prescription. In the meantime I wanted to try a « cheap » solution because 3 months of rental is over $400 and I don’t want to put too much money in that if ever they find I do have UARS after the polysomnography because then I’d be able to buy a new one through my insurance.

Also I’m not sure if I’ll be able to provide my pneumologist with the cpap’s data if I buy it myself and not through a « store »
Argh this thing is so complicated

I'm originally from Quebec, Dollard. But I've been in Ontario for years.

Don't worry about setting it up, we can help, provided it's not a brick.

Ideally a VAuto would be preferred but given your price constraint a ResMed AirSense 10 AutoSet or ResMed AirSense 10 AutoSet for Her, may be the way to go.

I've bought a few on Kijiji.ca and if you're patient you can get them quite cheap. A lot of sellers don't know much about the machines they are selling you have to be very careful your'e not getting a subpar model. Often you need to tell them how to determine the model and run hours.

If you do go the used market:

• make sure it's from a smoke-free home
• find out how old it is
• find out the run hours
• know the exact model
• you'll likely need a mask

Looks like I scored a Resmed Airsense 10 for her at a pretty decent price. I should have it tomorrow, it was purchased in July 2019 so it’s still under warranty.

I will need a mask though, I guess buying a used mask is not recommended?!

And I will need help to set it up correctly as well, any imput, any post I can refer to?

You're going to need to get a Clinician Manual, and learn how to get into clinician mode.

You can request one here:
https://www.apneaboard.com/adjust-cpap- ... tup-manual

The first thing you will want to do in clinician mode is to erase the previous owners data and reset to defaults.

Your going to want an SD Card if it didn't come with one.

I would set it up as follows:


Mode: AutoSet
Max Pressure: 14.0
Min Pressure: 7.0
Mask: Pillows

I'm a firm believer that eventually we want to set the maximum pressure to 20, the philosophy being, let the machine go where it needs to go. But during the early days of therapy, let's cap the maximum. I think it's more important that we do everything we can to increase the success of sticking with therapy. That may mean preventing required pressure, even if it's not optimal yet.

As you become more tolerant to therapy, we can increase the maximum. And we can adjust the minimum based on pressure needs, from future posted graphs.


Response: Standard
Ramp Time: Auto
Start Pressure: 6.0

This sets the initial pressure to 6.0 and until the device senses you're asleep then will ramp to the therapy pressures.


EPR: On
EPR: Fulltime
EPR Level: 3

This turns on Exhale Pressure Relief, drops the pressure while exhaling by 3 centimetres. Helps breath out while new, many including me, still use it.


Climate CTRL: Auto (if heated hose), otherwise 4
Tube Temp: Auto (if heated hose)

This sets the humidity to medium and will adjust the heated tube temperature to reduce the potential for condensation. This s a comfort feature and depending on how you feel we may want to increase or decrease humidity.


AB Filter: No

You don't have an anti-Bacterial Filter.


Essentials: Plus

This increases detail of information presented and allows aim comfort settings to be adjust without entering clinical mode.


SmartStart: On

This allows device to turn on by breathing deeply into mask and off should it detect you're not attached any more.


Then after your first night, describe how your feel, post some graphs and we can start tweaking. Your first few days are likely not to be indicative of your usage as you get accustomed to things so there may not be much to change initially.


Try on your masks and the various nasal pillow sizes, run Mask Fit to help you adjust it until you get no leaks.

About a mask:

I have no problems with a used mask, I would just clean it and go. But, hoping a used mask fits, is a compatible style and comfortable for me is not likely going to happen.

Masks are personal and definitely not one size fits all.

A good entry level, inexpensive and popular mask is the ResMed P10 Nasal pillows or the for Her if you have a smaller head.

It comes with three different size nasal pillows, so one is likely to fit.

I get all my CPAP supplies from https://www.cpapoutlet.ca, good prices, quick delivery. The are based in Ontario, not sure what the delivery time is to Montreal.

Are you sure it IS an auto and not a plain cpap?

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