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

Post by canyouhearmeaya » Wed Jun 20, 2018 8:30 am

Why do you think a MAD won't work? I myself had my own scepticism about them and still do, however it does make physiological sense and it seems that they're more successful in UARS than actual Sleep apnea, which is why I'm certianly inclined to give it a go.

Also, why don't you like the doctor? I was a bit miffed he didn't do a scope, but I suppose if it was clear enough to see that my turbinates were enlarged without a scope, then maybe that suggests its blind to see and didn't require a scope.

The reason I was hopefuly for the MAD was simply because I'd had orthodontic work done in my early teens, which is probably similar to the time the problem came on. So it does make me wonder how much tongue and jaw position has to do with it. He said my pallette looked good, but again that was from him simply looking down my throat and me going 'Ahhhhhhhh' :lol:

I wouldn't go and spend $1700/£1000 on one. I don't really think that's necesary, I kind of feel a MAD is either going to work or isn't, and can't quite see how the cost is justified on a 'dentist custom' one when you can buy an adjustable kit which you can self mould (which is what i've ordered) for £80 / $105. That'll arrive tomorrow, so I'm certainly going to try it, nothing to lose (apart from £80 lol.)

If the MAD doesn't work, then I wonder if it's worth going back to the GP and pushing for them to do another sleep study, presumebly in lab it will be more sophisticated.

I think the issue arises in the fact that it doesn't seem many doctors understand UARS, which makes this whole process more difficult.

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

Post by canyouhearmeaya » Wed Jun 20, 2018 8:56 am

To add: I've booked a GP appointment this Friday, in which I'm going to explain what the ENT said, and see if I can request an in-lab sleep study.

My study at home used a pulse oximeter fitted to a watch I had to wear, along with a sensor that fitted on my chest. It was this:
http://www.sleep-study.co.uk/detailed-i ... chpat.html

Now ofc the results seemed fairly indepth, it gave me an AHI of 1 and an RDI of 15, showed my positions and that RDI was twice as high in REM, and showed my sleep stages and that they are fragmented.

Does anyone know what exactly they can use in an in-lab sleep study that will potentially help better diagnose the exact cause of my RDI, that wouldn't have been present in my home study?

I just want to be armed with information so that I can suggest this to the doctor, if it is worthwhile doing an in-lab study.

Here's the link again to my home sleep study report:
https://www.scribd.com/document/3807681 ... eep-Report

Annoyingly the website seems to have butchered it a bit, hopefully you can still read it sufficiently, if not it should view fine downloaded.

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

Post by OkyDoky » Wed Jun 20, 2018 9:24 am

One advantage of an in lab Sleep Study is they can use a probe to measure Pes (esophageal pressure) which is the diagnostic test for UARS. If an esophageal probe (Pes) is used, progressive elevation of esophageal pressure fluctuations terminating in arousals is noted.
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ChicagoGranny
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Re: Need help, suspect UARS. Want to try APAP - need advice and guidance.

Post by ChicagoGranny » Wed Jun 20, 2018 9:34 am

canyouhearmeaya wrote:
Wed Jun 20, 2018 8:56 am
Does anyone know what exactly they can use in an in-lab sleep study that will potentially help better diagnose the exact cause of my RDI, that wouldn't have been present in my home study?
1. EEG leads to monitor for alpha-delta pattern. This is a nonspecific EEG finding in which there is intrusion of wake alpha pattern into the deep, slow-wave sleep.

2. Esophageal pressure monitoring

See - https://books.google.com/books?id=WHeY9 ... &q&f=false

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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 Jun 20, 2018 9:45 am

What are the odds of talking the NHS in the UK into doing an in lab sleep study with the Pes device?
What are the odds of even finding a lab that knows how to use one? Even here in the US the choices are extremely limited.

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

Post by ChicagoGranny » Wed Jun 20, 2018 10:55 am

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

Post by ChicagoGranny » Wed Jun 20, 2018 10:56 am

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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 Jun 20, 2018 11:52 am

P*ss off you pesimists :lol: I'll mention it to them, can't hurt to ask.. but yeah, I won't be overly hopeful, this is the NHS afterall. Equally, even if they just do a sleep study to determine if they feel CPAP/Bi-pap might resolve the issue, that way I might be able to get a machine on the NHS and titrated, rather than me having to pay out of pocket.

Has anyone ever had any experience with mattress softness, and how that influences breathing? If at all?

I just wonder, because my mattress which I have now (and had for a while) is VERY soft. I wonder if the mattress hardness has any influence on sleep disordered breathing at all?

Or even if it just might be a further hindering factor to sleep quality.. Intrigued to try sleeping on a firm surface (might even try sleeping on the floor with a yoga mat :lol: ) to see if they has any impact on my quality of sleep.

:shock:

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

Post by ChicagoGranny » Wed Jun 20, 2018 12:59 pm

canyouhearmeaya wrote:
Wed Jun 20, 2018 11:52 am
I just wonder, because my mattress which I have now (and had for a while) is VERY soft.
You might have a point.

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

Post by ChicagoGranny » Wed Jun 20, 2018 1:00 pm

To start, says Arya Nick Shamie, MD, associate professor of orthopedic surgery and neurosurgery at Santa Monica UCLA Medical Center, the mattress needs to support your body in a neutral position, one in which your spine has a nice curvature and your buttocks, heels, shoulders, and head are supported in proper alignment

"If the mattress is too firm, it will push on those main pressure points and take you out of alignment," Shamie tells WebMD. "If it's too soft, those pressure points won't be properly supported, so your whole body flops back." Both of these scenarios can lead to an achy morning.

Generally speaking, one type or brand of bed isn't better than another, says Michael Breus, PhD, a WebMD sleep expert and author of Beauty Sleep: Look Younger, Lose Weight, and Feel Great Through Better Sleep. But he does find that a firmer bed seems to be better for people with lower back pain.

https://www.webmd.com/sleep-disorders/f ... mattress#1

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

Post by ChicagoGranny » Wed Jun 20, 2018 1:03 pm

As far as breathing goes, a firm, foam cervical collar helps maintain neck and head in the best position for airway patency.

I've used a 4-inch, firm DMI for years. Refuse to sleep without it - https://www.walmart.com/search/?query=d ... dmi%20firm

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

Post by canyouhearmeaya » Thu Jun 21, 2018 4:40 am

Has anyone ever used Modafinil? I understand it's prescribed predominately to narcoleptics, but is often used by people suffering with sleep deprivation (and equally by people without sleep issues as a cognitive enhancer.)

I understand it can help the brain to function in spite of poor sleep to some degree. Given that I am still trying to find a solution to this problem, I have been debating trying it just to see if it brings me some relief so I can at least get on with life a bit whilst I'm trying to find resolve to this.

Would be interested to hear anyones experience.

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

Post by ChicagoGranny » Thu Jun 21, 2018 2:53 pm

canyouhearmeaya wrote:
Thu Jun 21, 2018 4:40 am
Has anyone ever used Modafinil?
I have a friend who goes to my excellent sleep doctor. The doctor brought it up to friend on one visit, but said it is an "on" switch and there is no "off" switch. She doesn't like to prescribe it because it is difficult to find an effective dose that will still let the patient fall asleep at bedtime.

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

Post by canyouhearmeaya » Fri Jun 22, 2018 11:38 am

Went back to the GP, explained what the ENT said, I asked if they could refer me for a in-lab sleep study, he said first I'd have to see a respiratory consultant, who would then have to make the referral for a sleep study, and that the wait for each would be months... so it's probably 6 months to even get a sleep study on the NHS. GRRRR, why are forced to pay for such useless health system. :evil: :evil:

FIrst night with the moulded MAD was a fail, it came out of place. Will try again with that for a few more nights to see if I can even get it to stay put, and then see if there's any benefit.

Other than that, it looks like its back to CPAP. Given I don't think I can get hold of a bi-level, I guess I'd have to try the Resmed Airsense 10 auto again.
Last edited by canyouhearmeaya on Fri Jun 22, 2018 12:20 pm, 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 » Fri Jun 22, 2018 12:16 pm

What are the main benefits of FFM v Pillows?

I figured a FFM would lead to LESS leaks, but it seems some people claim they're worse? I can nasal breathe, because most of the time I can tape my mouth at night (without any CPAP etc) and wake up alive, apart from the few times I woke up gasping for air through my mouth (even though my nose wasn't even totally blocked, so I expect that was due to an apnea or something.)

My only concern is that exhaling a lot of the time with the P10 felt difficult, even with EPR set to 3. But if I can sleep all night breathing through my nose (albeit disturbed) WITHOUT Cpap, should in theory I be able to do the same WITH nasal pillows and CPAP?

What I wonder is, are the nasal pillows exacerbating potentially, the issue with my turbinates, that I seem to somewhat get by with, without the mask on?

I know one night when I had the CPAP with the P10, I woke up with air leaking out my mouth, then I ended up taking the mask off. I never tried the pillows with mouth taping, which if I go down that route again, might be an option worth trying.

Is a regular nasal only mask rather than a nasal pillow mask, going to be any easier to breathe with than pillows, in my situation?

The other thing I wondered was going for a Dreamwear v the P10 which I believe someone mentioned earlier in this thread. It appears the dreamwear has a rotating hose fiture at the top of the mask, which might be better as I'm a stomach sleeper. With the P10 I found myself needing to have the hose run under my body, and obviously it was a little difficult to change position without knocking the hose. I wonder if the dreamwear will allow me just to have the hose run along the top of my bed above my pillows, and therefor not need to move it at all to change position due to the rotation at the top.

Can a dreamwear mask be used fine with an Airsense 10, even with the heated hose?