New CPAP user..In England/UK... Still waking up during the night

[UARSandApneaguy87]

I'm a guy in my 20, based in England. Recently diagnosed with suspected UARS, bordering on sleep apnea. Basically my AHI was 2 per hour for my sleep study, but some hours it went really low (1.5) whereas other hours it was higher (5). I had long hypopneas (40/50 seconds on the study).

Got a Dreamstation CPAP Auto (APAP) from Phillips. So I've slept 3 nights so far with it.

I have noticed some benefits. I feel way sharper mentally, but still feel tired because I keep waking up to pee. The need to pee several times a night is what caused me to seek out testing. I have ruled out other causes for this. Now this may sound disgusting, but I pee in a bottle because of the fact that I'd wake up so many times (6 or 7 on some nights).

Since I began CPAP, I'm still waking up, either to pee or to adjust my pillow between my legs (when I switch from back sleeping to side sleeping, I have to change the pillow). I am definitely feeling cognitively better, and I can sleep with it on (second night I slept 9 ish hours, 3rd night 8ish) this waking up is annoying me.

I've included my OSCAR software here for the first 3 nights, hopefully someone can give me an idea of whats going on?

Important details about the first 2 screenshots --- On the first 2 days, there are some points during the day where I turned on the machine but was just awake and on my phone. I highlighted them in red to not be counted in the sleep and to ignore it.

In the first screen shot, I went to bed around 5am and woke up at 10am, then back to bed for 1.5 hours. Woke up several times throughout night
In the second shot, I went to bed around 4am and woke up around 1.30pm. Again, woke up several times throughout night to adjust position and to pee

So even tho the 3rd night has a large leak rate, the other 2 didn't (I think??? Can't read the data) and i felt the same, needing to awake through the night. Also, I wear a large full face mask if that makes any difference. Could maybe try medium.

I've also attached a zoomed in picture of my flow rate from my second screenshot sleep when i was having a hypoponea from around 6am. It covers 2 minutes.

[Pugsy]

Welcome to the forum.

First let's clean up the report images so you and the members can better evaluate things.
On the left side of the graphs scroll all the way down to the bottom and find "sleep sessions"....the sleep sessions you want to ignore because they are cluttering up everything just click on them and turn off that particular session so it will be omitted from the graphs and statistics as well.

Hide the calendar as well...this lets more useful and important statistics to come into view.

Your comment about the zoomed in on hyponea at 6 AM...I can't see a zoomed in image. Did it not get posted?
We are limited to 3 image attachments per post.

If you have UARS you are going to have to rely more on how you feel than the data from the machine. It was never designed to record or respond to the subtle changes that are present in the airway with UARS.

Do you pee a lot during the day?

[UARSandApneaguy87]

Welcome to the forum.

First let's clean up the report images so you and the members can better evaluate things.
On the left side of the graphs scroll all the way down to the bottom and find "sleep sessions"....the sleep sessions you want to ignore because they are cluttering up everything just click on them and turn off that particular session so it will be omitted from the graphs and statistics as well.

Hide the calendar as well...this lets more useful and important statistics to come into view.

Your comment about the zoomed in on hyponea at 6 AM...I can't see a zoomed in image. Did it not get posted?
We are limited to 3 image attachments per post.

If you have UARS you are going to have to rely more on how you feel than the data from the machine. It was never designed to record or respond to the subtle changes that are present in the airway with UARS.

Do you pee a lot during the day?

It didn't get posted. I'll post it here --- it covers a hypopnoea event. I notice the leakage area is grey, does that mean that my mask leaked when I had this hypopnoea?

And I do not pee during the day that much. And thanks for that info.

And well I basically have borderline Apnea. I never did a WatchPAT study, my doctor just said UARS based on my home test which can't even detect RERAs. He said its basically borderline because i have some hours where my AHI is 5 and that some of my hypoponeas were really long.

[Miss Emerita]

Welcome! It's great that you're already sleeping for good chunks of time with your machine and that you're feeling sharper during the day.

I see that you raised your minimum pressure from 4 to 6; that was a good move, and you might consider experimenting by inching it up .5 at a time, staying at each new minimum for at least a few days. That might help you reduce the number of hypopneas you're experiencing.

Feel free to post additional charts along the way. It'd be helpful if you turned off the calendar before taking your screenshot so that the information further down on the left panel will be visible.

Here's some good basic information about nocturia: https://www.sleepfoundation.org/physica ... tion-night

Some obvious questions: do you drink alcohol, tea, or coffee in the 4 hours or so leading up to bedtime? They have diuretic effects, as do some foods, like apples, cabbage, and watermelon. Do you drink liquids of any kind during the 3 hours before bedtime? Are you taking any meds that might be diuretic?

If no to all of that, then I'd recommend you bring this up with your doctor. It's important to figure out what is causing the unusual number of times you need to urinate during the night. The doctor may ask how much you urinate during your nighttime trips to the bathroom and how much and how often you urinate during the day.

In the meantime, you can be keeping track of the frequency of the bathroom visits. Perhaps this will start getting better with some more CPAP usage. Wouldn't that be nice!

[UARSandApneaguy87]

Welcome! It's great that you're already sleeping for good chunks of time with your machine and that you're feeling sharper during the day.

I see that you raised your minimum pressure from 4 to 6; that was a good move, and you might consider experimenting by inching it up .5 at a time, staying at each new minimum for at least a few days. That might help you reduce the number of hypopneas you're experiencing.

Feel free to post additional charts along the way. It'd be helpful if you turned off the calendar before taking your screenshot so that the information further down on the left panel will be visible.

Here's some good basic information about nocturia: https://www.sleepfoundation.org/physica ... tion-night

Some obvious questions: do you drink alcohol, tea, or coffee in the 4 hours or so leading up to bedtime? They have diuretic effects, as do some foods, like apples, cabbage, and watermelon. Do you drink liquids of any kind during the 3 hours before bedtime? Are you taking any meds that might be diuretic?

If no to all of that, then I'd recommend you bring this up with your doctor. It's important to figure out what is causing the unusual number of times you need to urinate during the night. The doctor may ask how much you urinate during your nighttime trips to the bathroom and how much and how often you urinate during the day.

In the meantime, you can be keeping track of the frequency of the bathroom visits. Perhaps this will start getting better with some more CPAP usage. Wouldn't that be nice!

Thanks. I raised the minimum pressure to 7 for my 3rd night, and I notice the pressure goes as high as 12 during my apnea events. I had no issues sleeping to 7 pressure.

I drink tea but not leading to bed time. I've tried limiting fluid intake, I just end up waking up but without the urge to pee, which is equally as annoying. No meds. I brought up to my doc, we explored lots of potential causes, I figured it would be apnea as my apnea events are correlated with waking up to pee. I hope it gets better!

[Pugsy]

Gray area....yes you were in large leak when that hyponea got flagged. Not deep into large leak territory though but likely just barely over the line.

We can have wake ups during the night and they not be related to a full bladder but often people figure "I am awake I might as well go pee" but the cause of the wake up isn't a need to pee.
The result to our sleep quality is still of course unwanted though because anything that messes with our sleep is of course unwanted.
Unfortunately the list of potential culprits for causing repeated unwanted wake ups is quite long and not always related to airway issues and the cpap machine can only fix airway related problems. It can't fix bad sleep if that bad sleep isn't related to airway issues.

You are in England so you may not have the same options that we here in the US have. I am going to amend your topic to include where you are at to get the attention of a forum member who is in England and can maybe offer some advice on your options.

In general though...3 nights simply isn't enough to expect much of anything and especially since your doctor is sort of winging it and saying essentially "we don't know exactly what is going on but lets try this to see if it helps" kind of thing.
More on that later. I am short on time at the moment.

[UARSandApneaguy87]

Gray area....yes you were in large leak when that hyponea got flagged. Not deep into large leak territory though but likely just barely over the line.

We can have wake ups during the night and they not be related to a full bladder but often people figure "I am awake I might as well go pee" but the cause of the wake up isn't a need to pee.
The result to our sleep quality is still of course unwanted though because anything that messes with our sleep is of course unwanted.
Unfortunately the list of potential culprits for causing repeated unwanted wake ups is quite long and not always related to airway issues and the cpap machine can only fix airway related problems. It can't fix bad sleep if that bad sleep isn't related to airway issues.

You are in England so you may not have the same options that we here in the US have. I am going to amend your topic to include where you are at to get the attention of a forum member who is in England and can maybe offer some advice on your options.

In general though...3 nights simply isn't enough to expect much of anything and especially since your doctor is sort of winging it and saying essentially "we don't know exactly what is going on but lets try this to see if it helps" kind of thing.
More on that later. I am short on time at the moment.

I have ruled out the other causes such as diabetes and what not so i'd be surprised if it was them. Thank you for amending the topic.

Well I also noticed that my pressure got up to 12 on the second night of CPAP, despite there being no flagged flow limitaitons or apneas when it did that. Is it possible it adjusted itself to 12 because i woke up?

[Pugsy]

Well I also noticed that my pressure got up to 12 on the second night of CPAP, despite there being no flagged flow limitaitons or apneas when it did that. Is it possible it adjusted itself to 12 because i woke up?

Awake breathing irregularities can confuse the machine and it might increase the pressure due to "false positives" if you were awake for very long. To figure that out you have to learn to distinguish between awake flow rate and asleep flow rate.
Takes a bit of time and work to figure out but you can go here and watch the videos to get an idea what to look for.
http://freecpapadvice.com/sleepyhead-free-software
Bear in mind that while they talk more about central/CA apneas....it's not limited to just centrals. We can have false positives in any event category.
The machine has zero way to know if we are asleep or not. It only measures air flow....so it can and will respond to awake breathing irregularities.

That said. There is a complicated algorithm that causes the machine to increase the pressure....it's not something that it does during any apnea event anyway. The machine doesn't do anything but twiddle its little thumbs DURING the event. It can't blow open the airway.
Can't go high enough fast enough to do any good so it does nothing until the airway is back open and at that point it re-evaluates things in terms of what was going on prior to the flagged event and when was the last event prior to that one and are there snores going on or flow limitations...etc.

[UARSandApneaguy87]

Well I also noticed that my pressure got up to 12 on the second night of CPAP, despite there being no flagged flow limitaitons or apneas when it did that. Is it possible it adjusted itself to 12 because i woke up?

Awake breathing irregularities can confuse the machine and it might increase the pressure due to "false positives" if you were awake for very long. To figure that out you have to learn to distinguish between awake flow rate and asleep flow rate.
Takes a bit of time and work to figure out but you can go here and watch the videos to get an idea what to look for.
http://freecpapadvice.com/sleepyhead-free-software
Bear in mind that while they talk more about central/CA apneas....it's not limited to just centrals. We can have false positives in any event category.
The machine has zero way to know if we are asleep or not. It only measures air flow....so it can and will respond to awake breathing irregularities.

That said. There is a complicated algorithm that causes the machine to increase the pressure....it's not something that it does during any apnea event anyway. The machine doesn't do anything but twiddle its little thumbs DURING the event. It can't blow open the airway.
Can't go high enough fast enough to do any good so it does nothing until the airway is back open and at that point it re-evaluates things in terms of what was going on prior to the flagged event and when was the last event prior to that one and are there snores going on or flow limitations...etc.

Thanks. Well OSCAR says that for 95% of the second night i was in pressure 9.5 and third night was 8.2. So do you think I would benefit from raising the minimum pressure from 7 to 8, and wearing a medium mask instead of a large one (for leaks)?

[Pugsy]

Thanks. Well OSCAR says that for 95% of the second night i was in pressure 9.5 and third night was 8.2. So do you think I would benefit from raising the minimum pressure from 7 to 8, and wearing a medium mask instead of a large one (for leaks)?

First of all the 95% number just means you were AT OR BELOW that number for 95% of the night. It is NOT an average where you spent 95% of the night AT that number. People often don't understand exactly what it is.

I never advise pressure changes based on a 95% number because it is so easily skewed.
I never advise pressure changes based on short term, one night's results, unless there is an urgent need.
I never advise pressure changes until I can actually get a better handle on where the pressure is trending and your graphs are extremely difficult to evaluate because of the sleep sessions that are to be ignored because of the clutter they are causing.
I don't advise pressure changes because of a change in mask size or type.
I don't advise pressure changes until I have ruled out that the reason the machine went higher was because of false positives or not.

We can't see the statistics to see averages....so I don't know what your median average pressure was but you need to pick a number and stick with it for a week or so and see what happens.

I think a minimum pressure of 8 would likely be a good starting point though especially since you are using Flex exhale relief which drops the overall average pressure a bit. I am guessing here though because I can't really see the statistics and the graphs have so much clutter.
Assuming you were for sure asleep when the hyponeas got flagged then a little more minimum is usually what is needed.

[UARSandApneaguy87]

Thanks. Well OSCAR says that for 95% of the second night i was in pressure 9.5 and third night was 8.2. So do you think I would benefit from raising the minimum pressure from 7 to 8, and wearing a medium mask instead of a large one (for leaks)?

First of all the 95% number just means you were AT OR BELOW that number for 95% of the night. It is NOT an average where you spent 95% of the night AT that number. People often don't understand exactly what it is.

I never advise pressure changes based on a 95% number because it is so easily skewed.
I never advise pressure changes based on short term, one night's results, unless there is an urgent need.
I never advise pressure changes until I can actually get a better handle on where the pressure is trending and your graphs are extremely difficult to evaluate because of the sleep sessions that are to be ignored because of the clutter they are causing.
I don't advise pressure changes because of a change in mask size or type.
I don't advise pressure changes until I have ruled out that the reason the machine went higher was because of false positives or not.

We can't see the statistics to see averages....so I don't know what your median average pressure was but you need to pick a number and stick with it for a week or so and see what happens.

I think a minimum pressure of 8 would likely be a good starting point though especially since you are using Flex exhale relief which drops the overall average pressure a bit. I am guessing here though because I can't really see the statistics and the graphs have so much clutter.
Assuming you were for sure asleep when the hyponeas got flagged then a little more minimum is usually what is needed.

Ok thanks, I didn't know that. Do you think the mask leaks are causing a problem? As I said, I'm already feeling significant cognitive benefits 3 days in, but something still feels a little missing. If I changed mask size to medium and fixed the leaks I am wondering if this would relieve more symptoms such as peeing and tiredness.

[Pugsy]

Do you think the mask leaks are causing a problem? As I said, I'm already feeling significant cognitive benefits 3 days in, but something still feels a little missing. If I changed mask size to medium and fixed the leaks I am wondering if this would relieve more symptoms such as peeing and tiredness.

I can't answer that but I always say it never hurts to try something as simple as a change in mask sizing or even mask type.
It wouldn't be impossible for even small leaks to cause wake ups and yours aren't exactly even small.

You also need to take a big dose of the "patience pill".
You are already much farther ahead after 3 days than I was after 3 weeks.

While a few people get an overnight miracle....most people it is a gradual thing and a work in progress.

[rick blaine]

Hi UARSandapneaguy87,

Yours is a complex story with nothing that jumps out and suggests which way to go.

It's also that you are asking questions after only three nights, when often it can easily take three weeks or more before 'the pattern' becomes obvious.

And also because you say (a) 'suspected UARS' but also that (b) ' my doctor just said UARS' – when such a diagnosis is – how shall I put it? – problematic.

In that context, I think it's worth excluding other reasons for your nocturia.

Miss Emerita has mentioned some possibles: I won't ask the same ones twice. Instead, I'll mention a few others.

And I hope you'll forgive me if I'm being intrusive.

You say you've been tested for diabetes, type I, and that was negative. And at your age, prostate enlargement is unlikely. But have you also been tested for urinary tract infection? That can cause irritation. And irritation can lead to frequent urination.

Do you wear tight, non-cotton underwear? Any fabric which doesn't absorb urine and sweat, but lets it dry on the surface of the 'cloth' can provide an environment which bacteria thrive in.

I know half the country is 'on furlow' at the moment, but are you working? And are you working in a way or at a place which doesn't allow too many bathroom breaks? Multiple drop-off, parcel-delivery, van driving, for example. Or one of those internet-shopping warehouses, picking up and packing stuff – where their computer tracks your activity down to the second?

What I'm really asking is: are you 'holding it in'?

You say you 'don't pee much' during the day. Well, just 'holding it in' can cause irritation – and the irritation can only make itself known when you relax, and/ or are asleep.

Another possible – and it's a long shot – but if you hold your hands out flat, palms towards the floor, is the knuckle from the 'third finger' – the one next to the pinky – small or missing? And do your fingers sometimes turn white in the cold, and stay that way for a good bit? It's called Raynaud's syndrome and it's genetic – and one feature of it is: a smaller than average bladder.

Meaning you have to pee more often.

A non-invasive ultrasound is one way to check for that. Your doctor is the one to request that.

Still with the peeing four or five times a night. I agree with Pugsy, it may be that it's the need to pee that's waking you up. But, as she says, it could also be that something else is waking you up, and once awake you decide you might as well pee.

Here's a suggestion. It would be good info to take with you the next time you see your doctor if you had some idea of the total volume of liquid you output during the night (on average). Now, there's a firm called Mobility Smart in Preston, Lancs, which sells wheelchairs and rollators and so on. But they also sell other medically-related items. In particular, they sell this:

https://www.mobilitysmart.co.uk/long-ne ... rinal.html

This a well-designed collection bottle with a lid. A bottle which you can use both in and out of bed.

The key thing about it for you is that it has scale on the side, and you can stand the bottle upright on one end and read off the volume. It goes up to 1 litre.

It would be worth you knowing just how much liquid you are passing during the night. Is it an excessive amount in total? The average young male might produce 600 ml after eight hours of unbroken sleep, and on a intake which includes both caffeine and alcohol. What do you produce after eight hours – with, as you say – 'limiting fluid intake'?

Btw, it isn't just diabetes that has people peeing a lot – there are other possibilities. It can even be something as 'ordinary' as eating too much crisps (US: potato chips) and/ or other salty food. But it does seems to me it's worth you being able to exclude all these other possible explanations.

And: it may also be that – even after the matter of the night-time peeing is solved, or even ended – you would still have to deal with airway issues. And because of that, you should continue with the APAP treatment you have been prescribed by your doctor.

[UARSandApneaguy87]

Hi UARSandapneaguy87,

Yours is a complex story with nothing that jumps out and suggests which way to go.

It's also that you are asking questions after only three nights, when often it can easily take three weeks or more before 'the pattern' becomes obvious.

And also because you say (a) 'suspected UARS' but also that (b) ' my doctor just said UARS' – when such a diagnosis is – how shall I put it? – problematic.

In that context, I think it's worth excluding other reasons for your nocturia.

Miss Emerita has mentioned some possibles: I won't ask the same ones twice. Instead, I'll mention a few others.

And I hope you'll forgive me if I'm being intrusive.

You say you've been tested for diabetes, type I, and that was negative. And at your age, prostate enlargement is unlikely. But have you also been tested for urinary tract infection? That can cause irritation. And irritation can lead to frequent urination.

Do you wear tight, non-cotton underwear? Any fabric which doesn't absorb urine and sweat, but lets it dry on the surface of the 'cloth' can provide an environment which bacteria thrive in.

I know half the country is 'on furlow' at the moment, but are you working? And are you working in a way or at a place which doesn't allow too many bathroom breaks? Multiple drop-off, parcel-delivery, van driving, for example. Or one of those internet-shopping warehouses, picking up and packing stuff – where their computer tracks your activity down to the second?

What I'm really asking is: are you 'holding it in'?

You say you 'don't pee much' during the day. Well, just 'holding it in' can cause irritation – and the irritation can only make itself known when you relax, and/ or are asleep.

Another possible – and it's a long shot – but if you hold your hands out flat, palms towards the floor, is the knuckle from the 'third finger' – the one next to the pinky – small or missing? And do your fingers sometimes turn white in the cold, and stay that way for a good bit? It's called Raynaud's syndrome and it's genetic – and one feature of it is: a smaller than average bladder.

Meaning you have to pee more often.

A non-invasive ultrasound is one way to check for that. Your doctor is the one to request that.

Still with the peeing four or five times a night. I agree with Pugsy, it may be that it's the need to pee that's waking you up. But, as she says, it could also be that something else is waking you up, and once awake you decide you might as well pee.

Here's a suggestion. It would be good info to take with you the next time you see your doctor if you had some idea of the total volume of liquid you output during the night (on average). Now, there's a firm called Mobility Smart in Preston, Lancs, which sells wheelchairs and rollators and so on. But they also sell other medically-related items. In particular, they sell this:

https://www.mobilitysmart.co.uk/long-ne ... rinal.html

This a well-designed collection bottle with a lid. A bottle which you can use both in and out of bed.

The key thing about it for you is that it has scale on the side, and you can stand the bottle upright on one end and read off the volume. It goes up to 1 litre.

It would be worth you knowing just how much liquid you are passing during the night. Is it an excessive amount in total? The average young male might produce 600 ml after eight hours of unbroken sleep, and on a intake which includes both caffeine and alcohol. What do you produce after eight hours – with, as you say – 'limiting fluid intake'?

Btw, it isn't just diabetes that has people peeing a lot – there are other possibilities. It can even be something as 'ordinary' as eating too much crisps (US: potato chips) and/ or other salty food. But it does seems to me it's worth you being able to exclude all these other possible explanations.

And: it may also be that – even after the matter of the night-time peeing is solved, or even ended – you would still have to deal with airway issues. And because of that, you should continue with the APAP treatment you have been prescribed by your doctor.

Thanks for this response.

Haven't been tested for UTI. But as I've had these peeing symptoms for more than a year now, it means if I had a UTI I would had to have had it for years. And I don't feel any irritation when peeing.

I don't wear tight non cotton underwear no.

I'm currently unemployed and with my parents so I don't have to hold in my pee.

As for amount, usually about 100ml or so but some days it was 500ml.