Need help, suspect UARS. Want to try APAP - need advice and guidance.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
canyouhearmeaya
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Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by canyouhearmeaya » Tue May 29, 2018 2:01 pm

Hi all,

I'm 26, Male, from the UK. To cut a long story short, I've never been a great sleeper, for some reason I've alway tossed and turned a lot in sleep, very light sleeper, never awake refreshed from sleep. This has been going on well over 10 years. However I guess it was bad, but never bad enough for me to be cornened into figuring out what was going on. I just assumed the fact I was sleeping 8 hours a night, that maybe it wasn't sleep related.

At the end of 2017, I read a book called 'The Oxygen Advantage', it was actually during a period where I became interested in breathing and meditation. The book talks about the negative aspects of mouth breathing, and how we should be nasal breathers.. It dawned upon me I'd been a mouth breather most of my life, mainly because I tended to have blocked sinuses. At the age of around 12-13, I recall my sense of smell fading and my nose no longer feeling 'right', as if air flow was impaired. So anyway, I read the book, and made a concious effort to daytime nasal breathe. Lo and behold, my nose seemed to clear up a lot, allergies disappeared, quite amazing. Then I trained myself to nose breathe during sleep, by using medical tape to tape my mouth shut. Apart from a few times being woken by the fact I was trying to gasp for air through my mouth for some reason, I managed to sleep 'okay' doing that.

Ever since then, all my symptoms got worse. More fatigued, brain fog, sex drive has gone right down, just generally feeling bloody exhausted despite sleeping 8 hours a night. However if I have a night of sleeping say 6 hours or less, then its all amplified. I never originally considered sleep or the fact that breathing had ANYTHING to do with the onset of symptoms, so I had all my hormones checked, full thyroid, vitamins, minerals, inflammation... All came back good. I never get sick, my immune system seems to be great, and on paper I'm damn healthy. I eat well and exercise reguarly, so i have reason to be.

But I couldn't for the life of me understand why I was so constantly fatigued. My whole quality of life has just gone downhill.. then someone suggested sleep apnea.. So Saturday night, I took a home sleep study. I sent it off today for the results, so I figure they'll be back next week.

However, I also decided to record myself for the last 2 nights, to observe my breathing etc. I learnt that I snore occasionally, but very mildy and intermittently, its less of a rattling snore, sounds like more darth vader, but its certainly not anything compared to how I've heard some people snore lol. The fact that I sleep on stomach ( I can't sleep at all on my back) probably helps.

What I did observe, listening to my recordings, was that breathing sounds off. At times, I do stop breathing for upto 10-12 seconds, but very periodically, not continiously. This is when I started to think this probably isn't going to come back as OSA. However my breathing seems to have phases of being irregular, it sounds like im struggling to breathe at points, and I seem to move around a lot (rolling over 2-3x an hour). There are points where my breathing labours, and sometimes I suddenly take big gasps of air (however through my nose, not my mouth!) Most of my breathing by the sounds of it, is largely nasal now (so I guess my training worked lol.) However, even during the day, I get a constant sense that although my nose isn't blocked, it often feels like I'm not geting enough air through it. As if I'm very mildly being starved of oxygen.. If I lie down, this is more pronounced. Sometimes I can notice it before I'm even asleep, just laying there, it feels at times like I'm struggling to get air through.

So what I'm suspecting is, that I have restricted airways, and this is causing UARS. So rather than having constant apnoeas, I'm in a constant state of arousal hence the light sleep, fragmented breathing, constant moving around during sleep etc.

I live in the UK, and getting diagnosis via the NHS tends to be a VERY long process, and that's IF your doctor even takes you seriously (I have always found my local doctors but to be less than helpful, they're more than willing to give you anti-depressants, but don't actually want to explore why you might be feeling tired or off!!)

It also seems that if its OSA, it's fairly straightfowrad to diagnose, but if it's something like UARS, then that's even more difficult- whether you pay for it or not!!

So here's my predicament: I want to try an APAP. I'm fairly confident this is actually a sleep related issue now, and that on some level it is to do with my breathing. And the fact that it's all got worse since I trained myself to be a nose breather, leads me to believe it's probably due to restricted airflow in my nasal passages (which may explain why at a younger age I observed that sensation, and sense of smell faded a little.)

I hear mixed things, some people seem to say CPAP/APAP didn't help their UARS, other people have overnight successes. I can get hold of a Resmed Autosense 10 Autoset, which I've heard some people claim is one of the better models for UARS. I can't however AFAIK get hold of bipap or the others, just CPAP or APAP.

So I guess my questions are:
1) Is there any actual danger of trying APAP? Or is the worst case scenario it doesn't help, and I have a few funky nights sleep.
2) WHich model is best for UARS? I've heard some people talk about the Autosense 10 'For Her' Model, as it has some sort of feature which is actually better for UARS - recording RERA? Is that right? Should I be going for that over the regular Airsense 10 Auto?
3) I've heard some places claim that if the UARS is caused by nasal restriction, you're more likely to respond to CPAP/APAP therapy - can anyone confirm if theres any truth in that statement?
4) If I go ahead with trying APAP, can anyone advise me on the best settings to start with?

If I pick up the machine, I was looking at getting the new Resmed nasal pillow mask (the P10) as it looks like it'll be more comfier than some of the bigger ones, and it seems I seem to do a good job of being a nose breather these days (even if it's doing me wrong!)

I'd love to hear your advice and opinions. I know some people will think I'm crazy for wanting to try this without a confirmed diagnosis, but I feel so damn awful that I just need to try and find relief. I can't wait a year for diagnosis via the NHS, nor can I seem to find anywhere private in the UK that can reliably test of UARS. I left my job today due to the exhaustion and brain fog, I couldn't keep my role up. If needs must I will find work that doesn't require me to think for the time being lol, as the brain fog has totally impaired my ability to perform as I need to on a cognitive level!

Appreciate all of your help, and thanks for having me on the board! Thank you in advance. :)
Last edited by canyouhearmeaya on Wed May 30, 2018 10:44 am, edited 1 time in total.

canyouhearmeaya
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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by canyouhearmeaya » Wed May 30, 2018 10:42 am

At the moment my biggest issue is knowing which machine to go for, the Airsense 10 Auto or the Airsense 10 Auto For her..

Although I am male, I think I read that the 'for her' model detects RERA which are relevant to UARS, and the regular model doesn't.. Is that correct? and if so, would the 'for her' be better for treating UARS? Want to make sure I get the most suitable option!

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Pugsy
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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by Pugsy » Wed May 30, 2018 10:52 am

It used to be that the For Her AirSense 10 AutoSet was the only model that did RERA flagging but it appears now that has been added to the regular AutoSet as I have seen those flags on the non for Her AutoSet models.

I would suggest getting the for Her model though ...if at all possible just in case because we don't have any way of knowing when that feature was added and if the machine you are looking at is an older model that didn't have that feature. These machines can still be brand new but sit on the shelf for quite a while.

Besides that extra mode of operation might be worth at least trying in your situation.

The regular AutoSet has 2 modes...cpap fixed mode and apap (auto adjusting pressure mode).
The For Her model has 3 modes...cpap fixed and apap and another apap with a different algorithm than the regular algorithm.
I have the for Her AirSense 10 and currently using the for Her special apap mode and it is slightly different than the regular apap mode (which I have also tried) and I rather like it. Not a huge difference but a difference as the special mode is designed to be more responsive to flow limitations.
Don't know if it would benefit you or not but if you are going to experiment you might as well experiment with all possible modes.
Never know what might help.

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by ChicagoGranny » Wed May 30, 2018 10:59 am

canyouhearmeaya wrote:
Wed May 30, 2018 10:42 am
Airsense 10 Auto For her..
This model has all of the features the AirSense 10 Auto has plus one additional feature -
The pioneering new algorithm used in the AirSense 10 AutoSet for Her works by increasing sensitivity to flow limitation and optimizing the response to these events. By responding to each flow-limited breath, the algorithm helps provide comfortable therapy for women.
And, the price is usually the same. I would go with the For Her if the price is the same.

----------------------------------------------------------------------------------

For other parts of your post, you are trying to do a detailed diagnosis of yourself. My advice is to drop that idea, get a system and see if it helps.

Once you have a machine and mask, forum members can help you with machine settings to start with. After a night or two, they can help you tweak the settings.

Please stick to this one thread, so that anyone helping can see the history.

Good luck.

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by chunkyfrog » Wed May 30, 2018 11:08 am

Agree 100%!
When you stick to ONE thread, more people can help--and more quickly.
Welcome to the forum.

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canyouhearmeaya
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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by canyouhearmeaya » Wed May 30, 2018 11:10 am

Yes, price is the same. So it seems the For Her is the safe bet. A nice pink flowering machine for me... hahah! Anything for good sleep.

It does seem silly though, not to offer it on the regulat Autoset doesn't it? Surely the assumption that only females will benefit from that feature is kind of outrageous? Confusing!!

As far as setting up pressures, can anyone advise what I should be doing? Do I need to set pressures, or do I just stick it into Auto mode, put the mask an away I go? I've never used any kind of CPAP/APAP before, so not familiar at all with the process!

If the restriction is in my nose, but I seem to be nose breathing by enlarge anyway, would nasal pillows be my best bet? And the machine with the support it gives should hopefully help me overcome the restricted airflow through my nose? I must admit, the idea of using nasal pillows without a full mask sounds preferable, if it will suffice. The thought of a full face mask makes me feel uncomfortable!

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by canyouhearmeaya » Wed May 30, 2018 11:11 am

chunkyfrog wrote:
Wed May 30, 2018 11:08 am
Agree 100%!
When you stick to ONE thread, more people can help--and more quickly.
Welcome to the forum.
This is my only thread? Did you think I'd made more than one? Or were you saying what I did was right, to post all my questions in one thread? Haha.

Thanks for the welcome! :)

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by Pugsy » Wed May 30, 2018 11:15 am

Actually it isn't a pink flowering machine like the old S9 models.

The AirSense 10 AutoSet for Her is light grey to white with dark gray leaves and per my husband "doesn't look particular woman like to me and I don't see the big deal for the guys". :lol:

Colors look a bit weird due to lighting in my bedroom.

Image

Image

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by Pugsy » Wed May 30, 2018 11:17 am

Don't get the pink flowering S9 version/model. The RERA flagging was only added to the AirSense 10 line...the S9 model line never did it no matter if it was the for Her pink machine or not.

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by chunkyfrog » Wed May 30, 2018 11:20 am

Multiple threads--just being proactive :mrgreen:
Some newbies are so confused, that is exactly what they do.
As to "for Her" machines:
I have the Airsense 10 machine--it attracts fingerprints.
Tempted to apply decorative duck tape to cover the smudge that will not budge.
The S9 series had optional "skins"--too bad none are made for the new line.

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by canyouhearmeaya » Wed May 30, 2018 11:29 am

Oh yes, it's no longer pink. That's a bonus, I can deal with a few flowers lol!

With regards to the self diagnosis question - you're right. I'm very analytical, so it's a bad trait!

Here would be a better question:

I think I have a sleep related issue, and suspect it's related to breathing, however right now I don't know a) if that's correct or b) if it is, exactly what the cause is. I'm going to get the Autosense 10 For her to try out.

IF I have a breathing related sleep issue, whether it's OSA, CSA or UARS - will the data that the machine provides (or sleepyhead?) give indication as to whether I am on the right track? (I.e. whether it's actually breathing related, or whether it's not) So basically, will the machine actually help me to diagnose?

I think that's a better question / way to put it, rather than me making some rather bold assumptions lol!

So to start out, when the machine arrives, am I right in saying I just stick it into Auto mode (maybe the special 'For Her' mode to begin with) and go to sleep... and then post up the data here after a night or two, for those of who are educated on the numbers to provide some feedback?

Thanks again for the welcoming to the community and all your support so far, it's super helpful, and feels great to be surrounded by such helpful and knowledgable people. :D :D

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by Pugsy » Wed May 30, 2018 11:51 am

It's darn near impossible for me to spot UARS breathing on the data that the machine gathers.
If not doing the sleep study with the Pes device to document UARS ...it's mainly a rule out diagnosis and people have to go on subjective feelings and not the data the machine gathers. It's a maybe situation at best.
The machine is designed to flag apnea events...either a cessation of breathing (central) or a reduction in flow due to airway tissues obstruction that is of such and such reduction for at least 10 seconds.
When a person has UARS the flow reduction might not meet the criteria for OA, hyponea or central flagging so the data obtained from the machine really isn't designed to be that much of a help with UARS evaluation.
Now if there are a lot of RERAs flagged and not much obstructive stuff flagged it helps with the rule out thing but the absence of RERAs doesn't necessarily mean that there is or isn't UARS.

I know we as humans want to look at the "numbers" that these machines will give us as a clear cut diagnostic tool to evaluate our results but sometimes we have to put the numbers on the back burner and go on how we feel and that seems to be really hard for us humans to do.

CPAP will help crappy sleep if the crappy sleep is related to some sort of restrictive airway breathing issue.
It can't help if the cause of the crappy sleep isn't related to the airway.
I was just having this same discussion with someone else. He has crappy sleep...lots of arousals or awakenings and feels like crap.
We don't know if the arousals are related to the airway or if they are what we all spontaneous with no known cause. He had a home sleep study which didn't evaluate sleep status. CPAP won't help spontaneous arousals and figuring out what is causing them isn't easy at all.

Trying a cpap/apap to see if it helps with the crappy sleep...worth doing if someone has the money and they want to try it and are willing to do the education that they need to do to help them evaluate what they are seeing on these reports.
We can make some educated guesses with the data the machine can give us but sometimes it just can't do all that we need in terms of data reporting to make the evaluation easy.

I think that a lot of people who abandon cpap because it "didn't help the crappy sleep" probably had something else causing the crappy sleep and the machine can't fix anything that is unrelated to airway issues no matter how much we might what it to.
They had unrealistic goals.

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by canyouhearmeaya » Wed May 30, 2018 11:56 am

Pugsy wrote:
Wed May 30, 2018 11:51 am
It's darn near impossible for me to spot UARS breathing on the data that the machine gathers.
If not doing the sleep study with the Pes device to document UARS ...it's mainly a rule out diagnosis and people have to go on subjective feelings and not the data the machine gathers. It's a maybe situation at best.
The machine is designed to flag apnea events...either a cessation of breathing (central) or a reduction in flow due to airway tissues obstruction that is of such and such reduction for at least 10 seconds.
When a person has UARS the flow reduction might not meet the criteria for OA, hyponea or central flagging so the data obtained from the machine really isn't designed to be that much of a help with UARS evaluation.
Now if there are a lot of RERAs flagged and not much obstructive stuff flagged it helps with the rule out thing but the absence of RERAs doesn't necessarily mean that there is or isn't UARS.

I know we as humans want to look at the "numbers" that these machines will give us as a clear cut diagnostic tool to evaluate our results but sometimes we have to put the numbers on the back burner and go on how we feel and that seems to be really hard for us humans to do.

CPAP will help crappy sleep if the crappy sleep is related to some sort of restrictive airway breathing issue.
It can't help if the cause of the crappy sleep isn't related to the airway.
I was just having this same discussion with someone else. He has crappy sleep...lots of arousals or awakenings and feels like crap.
We don't know if the arousals are related to the airway or if they are what we all spontaneous with no known cause. He had a home sleep study which didn't evaluate sleep status. CPAP won't help spontaneous arousals and figuring out what is causing them isn't easy at all.

Trying a cpap/apap to see if it helps with the crappy sleep...worth doing if someone has the money and they want to try it and are willing to do the education that they need to do to help them evaluate what they are seeing on these reports.
We can make some educated guesses with the data the machine can give us but sometimes it just can't do all that we need in terms of data reporting to make the evaluation easy.

I think that a lot of people who abandon cpap because it "didn't help the crappy sleep" probably had something else causing the crappy sleep and the machine can't fix anything that is unrelated to airway issues no matter how much we might what it to.
They had unrealistic goals.
I think you nailed it. If it's breathing related, the machine should help. If the machine doesn't help, it's probably not breathing related. And going by feel, sometime is the answer.

So I guess it's as simple as that, I try the machine, if I feel better - hoorah! If I don't, then maybe I need to explore other avenues. I guess I'm so keen to try the machine simply because I've heard of people who have gone through fairly complex diagnosis processes, been told CPAP wouldn't help, have gone out and tried it themself and found great success (in some cases, overnight! Oh how miracoulous that would be!)

So unless I try, I guess I'll never know. I've ordered the machine (Airsense 10 Auto For Her) along with the p10 nasal pillow masks. Never thought I'd be excited about the prospect of sleeping with a piece of breathing aparatus, but I really am, in hope that this might help me find resolve to my situation.

On the auto 'for her' setting, will the machine calculate the pressures itself? So in effect, for the first night or two I just 'plug and play'? (OR in this case, 'Plug and Pray'!!)

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by Pugsy » Wed May 30, 2018 12:09 pm

You can try the default settings and let the machine sort it out but I don't know if you will be comfortable at the minimum default especially with the P10 pillows.

The default settings...4 minimum and 20 max in either apap mode. The max isn't the critical setting...the minimum is the critical setting and some people will feel like they are suffocating at the minimum of 4 starting point. When I did a screening of my own sister she lasted about 20 seconds at 4 cm and yanked the mask off screaming at me I was trying to kill her by suffocation.
She needed 6 cm starting point to feel like there was enough air moving. We can't suffocated at 4 cm but it can sure feel like it for some people. Now some other people do well at 4 cm and in fact think it is too much ...go figure.

The name of the game is to get good sleep though and not lay awake fighting with the machine if you aren't comfortable with the breathing.

If it were me and I was in your shoes and knowing what I know about this machine I would start with these settings.
Either apap mode..the regular or the for her mode.
Minimum of 6
EPR at 3
Max of 10
It should be quite comfortable rhythm and allow for adjusting and relaxing and falling asleep...easier.
Worry about any tweaking later once you are used to the mask and machine. Primary job first few nights...falling asleep with a machine and mask. You gotta get the sleep first before you can ever start evaluating anything.

The reason I don't suggest doing more max right away is sometimes if the machine wants to go higher the going higher disturbs the sleep and it also makes for mask seal fit harder to do and big leaks end up waking a person up. If we fit the mask so it doesn't leak at say 6 cm...that fitting might not hold up so good if the machine wants to go to 14 for some reason.

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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by canyouhearmeaya » Wed May 30, 2018 12:15 pm

Pugsy wrote:
Wed May 30, 2018 12:09 pm
You can try the default settings and let the machine sort it out but I don't know if you will be comfortable at the minimum default especially with the P10 pillows.

The default settings...4 minimum and 20 max in either apap mode. The max isn't the critical setting...the minimum is the critical setting and some people will feel like they are suffocating at the minimum of 4 starting point. When I did a screening of my own sister she lasted about 20 seconds at 4 cm and yanked the mask off screaming at me I was trying to kill her by suffocation.
She needed 6 cm starting point to feel like there was enough air moving. We can't suffocated at 4 cm but it can sure feel like it for some people. Now some other people do well at 4 cm and in fact think it is too much ...go figure.

The name of the game is to get good sleep though and not lay awake fighting with the machine if you aren't comfortable with the breathing.

If it were me and I was in your shoes and knowing what I know about this machine I would start with these settings.
Either apap mode..the regular or the for her mode.
Minimum of 6
EPR at 3
Max of 10
It should be quite comfortable rhythm and allow for adjusting and relaxing and falling asleep...easier.
Worry about any tweaking later once you are used to the mask and machine. Primary job first few nights...falling asleep with a machine and mask. You gotta get the sleep first before you can ever start evaluating anything.

The reason I don't suggest doing more max right away is sometimes if the machine wants to go higher the going higher disturbs the sleep and it also makes for mask seal fit harder to do and big leaks end up waking a person up. If we fit the mask so it doesn't leak at say 6 cm...that fitting might not hold up so good if the machine wants to go to 14 for some reason.
Okay great, that sounds like a good plan of action. Have you tried the P10 pillows? What did you think of them?

Do some people find they actually fall asleep quicker/better WITH the mask, simply because of the breathing benefit? Hoping that might be the case.. possibly wishful thinking!