UARS - my self therapy

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
c_doe
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Re: UARS - my self therapy

Post by c_doe » Sun Feb 03, 2019 3:45 am

New milestone!
I slept the whole night with the machine. Woke up couple of times, but I managed to kept it on.
Don't feel very well today, but also not that much worse than on some other bad days without cpap.

Still got some leaks, a lot of flow limitations and also a couple of central apneas.
Are the CAs something to worry about?
screenshot-20190203-103631.png
screenshot-20190203-103631.png (301.17 KiB) Viewed 2124 times

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palerider
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Re: UARS - my self therapy

Post by palerider » Sun Feb 03, 2019 3:20 pm

c_doe wrote:
Sun Feb 03, 2019 3:45 am
New milestone!
I slept the whole night with the machine. Woke up couple of times, but I managed to kept it on.
Don't feel very well today, but also not that much worse than on some other bad days without cpap.

Still got some leaks, a lot of flow limitations and also a couple of central apneas.
Are the CAs something to worry about?

screenshot-20190203-103631.png
No, they're not... they'll probably settle down as you get to where you're waking up less.

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c_doe
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Re: UARS - my self therapy

Post by c_doe » Mon Feb 04, 2019 2:06 am

Thanks @palerider.

*Update*
Tried to sleep tonight with an improvised headband to keep my mouth shut. It worked pretty good for one hour.
No leaks, no CAs, no dry mouth and my sleep tracker says I went into deep sleep.

Woke up after one hour though and the band felt very uncomfortable. Probably too tight and warm. I'll buy a "real" headband today. So far it seems promising...

werther
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Re: UARS - my self therapy

Post by werther » Wed Feb 06, 2019 2:53 pm

c_doe wrote:
Sat Feb 02, 2019 3:48 pm
Good luck with your therapy!
Can you post a sleepyhead screenshot with your flow limitations. I still get them too.
I'm sorry I didn't reply earlier. Here are two screenshots:
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Bildschirmfoto 2019-02-06 um 21.26.58.png
Bildschirmfoto 2019-02-06 um 21.26.58.png (81.27 KiB) Viewed 2023 times
Does anyone know how the machine marks events as flow limitations and decides to raise the pressure? When I look at the flow rate the minutes before the pressure increase (00:44) to me, it seems the same. At 00:45 I turned from my back to my right side.

We do have the same struggles: I'm trying to get my leaks under control by taping as well as keeping the mask on the whole night. It is getting better from day to day, last night I kept it on seven of 8 hours.

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Okie bipap
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Re: UARS - my self therapy

Post by Okie bipap » Wed Feb 06, 2019 4:20 pm

Flow limits are restrictions to your breathing that either (1) are not severe enough to be counted as a hypopnea, or (2) don't last long enough to be counted as a hypopnea. Your machine responds to them and raises the pressure in order to prevent what it thinks may become either a hypopnea or obstruction.

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c_doe
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Re: UARS - my self therapy

Post by c_doe » Thu Feb 07, 2019 2:49 am

Thanks @okie for the explanation.
Would you say, that in an healthy person, with no sleep apnea or breathing problems those flow limitations or resulting pressure raises wouldn't exist, or at least only on a minimal level? ... Just trying to figure out if my flow limitations could be an indicator for UARS, or not.

@werther I bought a ResMed Jaw-Headband. It works quite good. I have almost now leaks now. Flow Limitations are still there, but not as much as before.

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Pugsy
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Re: UARS - my self therapy

Post by Pugsy » Thu Feb 07, 2019 8:46 am

c_doe wrote:
Thu Feb 07, 2019 2:49 am
Would you say, that in an healthy person, with no sleep apnea or breathing problems those flow limitations or resulting pressure raises wouldn't exist, or at least only on a minimal level? ... Just trying to figure out if my flow limitations could be an indicator for UARS, or not.
Not Okie but thought I would chime in here.
UARS is thought to be more of when someone has their sleep disturbed more often by flow limitations that the rest of us might simply sleep through and not be bothered by some relatively minor flow limitations. Some people just find that their sleep gets easily disrupted by the least little change in anything.

Everyone will have some minor flow limitations here and there. Everyone will have an occasional even real apnea event of some sort every now and then. Very few people will ever have totally perfect flow rate with zero anything happening. The problem with sleep apnea is when people have enough events to either disrupt sleep quality often or they have oxygen level drops that can cause problems.

UARS is a tricky diagnosis to make and is more often a diagnosis made by ruling out the other potential culprits.
There is a device that can be used to be more definitive that can be used but you have to have a sleep study with the device in your airway/esophagus to be sure. Not a lot of labs do it.
It's called a Pes device
http://www.sleepmedicinecenters.com/Sle ... ceSyndrome

It's really hard to try to diagnose UARS from the data we get from these machines in terms of flow rate. They are really designed to treat sleep apnea and not diagnose anything and not really designed to show us the very minor changes in flow rate that might be flow limitations optimally. We can usually spot arousal breathing but not always able to spot any changes in the flow rate that might be responsible for the arousal in the first place....and then there are spontaneous arousals that are unrelated to any breathing issues that can happen too.

People with UARS can't depend on the machine to always increase the pressure (when using auto adjusting pressures) enough to keep the airway open well enough to prevent those relatively minor flow limitations that might be disturbing sleep. The machine's auto algorithm is designed to fight obstructive sleep apnea events that meet certain criteria. Flow limitations are part of the criteria but there are varying degrees of flow limitations and it's entirely possible that a UARS patient simply doesn't have a flow limitation bad enough to cause the pressure to increase much...but its bad enough to disturb a UARS patient's sleep.
This is why we can't always rely on the data that the machines give us when deciding best course of action or pressures needed. UARS patients will typically have a relatively low AHI and not much of great excitement going on in any data point because most of those data points are for OSA stuff...not very minor flow limitation stuff.

People with UARS have to rely on their own subjective feelings more than any data the machine is giving them in determining how effective the therapy is. It's hard to do...go by how we feel and ignore the numbers. We want to rely on the graphs or numbers as validation that this therapy is working. It's how we all do with all these medical tests...go by numbers in the results to define normal vs abnormal. Blood sugar or thyroid or liver or heart or cholesterol or whatever...we base our care on the numbers.

It's been my experience from the people here with documented UARS that they had to simply keep trying more pressure above what the machine as okay AHI before they started noticing improvement in how they slept and felt. They couldn't rely on auto mode to do the job because the machine wouldn't increase the pressure enough because not enough OSA stuff was going on to cause them to increase the pressure. Auto mode can still be used but simply at a higher minimum starting point that what the machine might be saying was needed if going by the numbers. Remember the numbers in this situation when its UARS and not OSA don't really tell the whole story.

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c_doe
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Re: UARS - my self therapy

Post by c_doe » Sat Feb 09, 2019 1:39 am

hey @pugsy, thanks for your advice, thats very helpful!

I've got back to the sleep lab, which I visited 3 years ago. They immediately responded and had a look at my data again. They said they have looked for UARS, but it came back negative. I slept really bad though back then and as you say it's tricky to spot UARS anyways, so I'll still keep it as an option...
I also talked with them about my nightly arm movements and they will sent my now to an other sleep lab which also have neurologists. They think it could rather be something neurological than pneumonic.

c_doe
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Re: UARS - my self therapy

Post by c_doe » Tue Feb 19, 2019 12:27 am

I've got the reports from the first sleep study few years back.

The home sleep test has the following interesting points:
Hours of sleep: about 6
AHI: 16,3 (Desaturation correlated: 8,3)
Apneas: 11
Hypopneas: 101
No snoring
SpO2 desaturations: 59
Lowest Sp02: 88%

The sleep lab report says (PSG):
Hours of sleep: about 3
AHI: 8,2
Apneas: 3
Hypopneas: 24
Arousals: 169
Arousal Index: 19,9
SpO2 desaturations: 16
No snoring.

I don't know, but both tests indicates an AHI of > 8. Why did the doc told me there is nothing....

The latest sleep test didn't pick up any Hypopneas though?!

c_doe
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Re: UARS - my self therapy

Post by c_doe » Mon Feb 25, 2019 12:37 am

*push*
Sorry in advance for pushing this back up.
But I would be interested to hear from some of the experts here about the above mentioned results.

I'm still waiting for my insurance to approve the sleep study at an other lab and until I get the appointment there it can take weeks or months, so I'm thinking whether I should force myself to use CPAP again in the mean time or not.

thanks!

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palerider
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Re: UARS - my self therapy

Post by palerider » Mon Feb 25, 2019 12:49 am

I honestly see nothing worthwhile about commenting on a years old sleep test.

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c_doe
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Re: UARS - my self therapy

Post by c_doe » Sun Mar 03, 2019 4:57 pm

Years old might be a bit exaggerated. It’s two years old.

What would you say about it, if it were two weeks old?

Just grasping at straws here...

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palerider
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Re: UARS - my self therapy

Post by palerider » Sun Mar 03, 2019 7:03 pm

c_doe wrote:
Sun Mar 03, 2019 4:57 pm
Years old might be a bit exaggerated. It’s two years old.

What would you say about it, if it were two weeks old?

Just grasping at straws here...
If you were new to therapy, or hadn't started yet, then it might be useful to look at it to see what mix of apnea types you had.

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tan
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Re: UARS - my self therapy

Post by tan » Sun Mar 03, 2019 11:19 pm

Do you still have issues with leaking, dry mouth?

c_doe
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Re: UARS - my self therapy

Post by c_doe » Mon Mar 04, 2019 12:29 am

I have stopped to use it for now.
The lab told me it isn’t respiratory related and that they had checked for UARS and I don’t have it. I should check for neurological reasons at a clinic.
After two weeks, I still had trouble to sleep with the machine and I felt more tired than without.

My insurance declined any further clinical examination. So I’m stuck at the moment.

After looking at the old reports I’m just wondering why they are so sure it isn’t respiratory related.