Help with nocturia

TL;DR:
1. In cases of severe OSA combined with severe nocturia how long did it take until your nocturia improved after starting CPAP?
2. Was it a straight improvement, or did it bounce around a bit?
3. On my machine (ResMed AirSense 10 Autoset) I can't adjust the pressure level. It's pre-set, to what I assume is the "prescription". The section that provides for changing the level is greyed out. Is this normal? I see a lot of people talking about changing their levels...

Here's the long version:
I've probably had apnea for a long while and simply had no idea. There was no reason to suspect it: I am 44 years old, not overweight, exercise regularly, and don't smoke or drink very much (the occasional glass of wine, but that's it).
What got me to an apnea diagnosis was the nocturia.

I was getting up 1-2 to pee times a night for a long time, and had spoken to my ENT about some reflux and snoring, but remarkably apnea wasn't on my radar. Then suddenly one night last November I had to get up once an hour, and often felt like I had to go, but couldn't. This lasted a couple days. I saw a urologist as soon as I could, but by then the symptoms had subsided to the normal 1-2 times a night. He determined I did have an enlarged prostate, but said it felt normal, typical for BPH (benign prostate enlargement). He did a flowometer and a couple sonograms and said everything looked good, I was voiding properly, and it was "probably something you ate". He had no idea as to why the increased urination was only happening at night, but said it was unlikely to be anything alarming. He told me to come back when I was 50. However while there I was alarmed to discover my blood pressure was slightly elevated. This turned out to be a big clue.

The more severe nocturia came back a couple weeks later. A night of googling brought me to OSA as the likely culprit: I was snoring, often waking up with what felt like a pounding heart (which I had previously thought was due to bad dreams or anxiety that I forgot upon waking), and when combined with the elevated blood pressure and the nocturia, Apnea looked like a real strong possibility.

My GP had never heard of a link between apnea and nocturia, and doubted such a link could exist, so he refused to order a sleep test ("it's an expensive test, and I practice rational medicine!" he said). He wanted to rule out an infection first and then wanted me to go back to the urologist. I already knew the wait time to get in to the sleep lab was over a month, and I didn't want to screw around. So I found a different doctor who works with a lot of sleep patients, and he didn't beat around the bush: my GP is wrong, and OSA absolutely needs to be considered. He ordered the test, I waited the six weeks, and then got my first sleep lab on December 30th, 2014.

The result was, frankly, a bit of a relief: severe apnea.

It was then *another* six weeks before I could get in to do the follow up sleep lab to determine the right CPAP levels (and also to make sure central apnea wasn't an issue - which it wasn't). And then it was *another* long six weeks before I finally got my machine on March 1st, 2015.

The first couple days were awful. I have nasal pillows and they are so uncomfortable. I wanted a mask, but no one asked me what I wanted. I found I had a tendency to wake up in the night and take the mask off to go pee, and then "give myself a break" by waiting a couple minutes to put the mask back on - during which I of course fell asleep, reducing the effectiveness of the treatment. And just yesterday I learned I had been wearing the mask wrong all this time: I thought the plastic strap went on the back of the head, and the fabric strap went on the top, but it turns out it's the other way around.

The nocturia seems like it's gotten a little better over the past 3 weeks, going from an average of 4 times a night to an average of 2 times a night but last night I had a flare up that was as bad as anytime I've ever had it. I got up 8 times. I did have a pretty big apnea event the previous morning: after waking up at 5am I decided to get one more hour of sleep without the mask and thought I could get away with it by sleeping on my side. I woke up at 6am with my heart pounding and knew I had made a mistake. I don't know if the apnea event in the morning would release enough ANP to cause severe nocturia later that night, but it's the only correlating factor I have to hang my hat on. My events were 2.1 per hour last night. ResMed doesn't break it down any further than that unfortunately, so I don't know if that's a cluster or how it's calculated.

I'm a little anxious that the nocturia hasn't seen more dramatic improvement after 21 days of treatment, but I also recognize the first couple days of treatment I didn't sleep at all, I had to figure out how to stop removing the mask in my sleep, and wearing the mask wrong probably reduced the effectiveness somewhat (there was no leaks reported by the machine however).

Basically I'm hoping someone here will tell me they had severe nocturia and that it took a while to improve. The sleep expert doctor said it could be six weeks before symptoms improve - but he didn't specify which symptoms. I know I'm probably jumping the gun a bit here, and this is all pure anxiety. I've been down this road before. But it doesn't help to not talk about it either, so here I am. Apologies for the long post.

I thought I was logged in, but I guess I wasn't. I am the OP, for whatever it's worth.

Get the software (links for information on software use are in my signature line) and let's see what that AHI is doing in terms of maybe clustering which could account for your symptoms. Perhaps most of the night things are doing well and maybe you are having some clusters during REM or when you are on your back that could mean a bunch of events for short periods of time which over the entire night averages out to a not so exciting AHI. I had this happen to me...my OSA is worse in REM sleep (quite common) and during REM sleep I was having some pretty ugly clusters but the overall AHI wasn't all that exciting because it was offset by the time not in REM where not much was going on. Once I busted up the clusters I was able to definitely see a marked reduction in my nocturia.

And yes..I know what it is like to get up to pee about once an hour and with a full bladder each time and that totally went away once I got my therapy optimized. It did take a little bit to get it optimized though.

My apnea is well controlled after 10 years, but I still have a bit of nocturia, even frequency during the day. I take a homeopathic remedy called "enuraid" that helps a lot. You'll hear a lot of hoo ha here about homeopathic stuff, but it works for me. Get it at a health food store, won't hurt to try. Oh, and you might want to try a nasal mask like the one in my signature.

Just a tip - I think we're assuming from your avatar name that you're female, but if not (or even if you are), then... have you had testing for other possible causes recently? Certainly the majority of us who had nocturia pre Cpap found it resolved afterwards, but not everything's due to OSA.

I can identify with this issue. I'm going to look for that "enuraid." In my case, though, there is irony. I had a 7 mm kidney stone two years ago and my urologist insists that the gold standard of prevention is for me to drink enough water that I have to get up to pee at least once a night. "At LEAST once!" he hollers, hinting that the more the merrier.

Glowradar, I hope you have a data machine.

glowradar,

Welcome to the forum.

Let's deal with some of your questions:

Guest wrote:TL;DR:
1. In cases of severe OSA combined with severe nocturia how long did it take until your nocturia improved after starting CPAP?

Nocturia was not an issue for me, but it was an issue for many of the posters here. Many of them report that the absence of nocturia was the first difference they noticed when they started CPAP. Some say it happened right away, some say it took a few days or a few weeks.

2. Was it a straight improvement, or did it bounce around a bit?

Until you're sleeping well with the machine, a lot of CPAP improvement bounces around a bit. And what I mean by sleeping well with the machine is this: Sleeping all night with the machine and not experiencing a large number of excess wakes due to discomfort. It takes some of us longer to simply learn how to sleep well with the machine.

3. On my machine (ResMed AirSense 10 Autoset) I can't adjust the pressure level. It's pre-set, to what I assume is the "prescription". The section that provides for changing the level is greyed out. Is this normal? I see a lot of people talking about changing their levels...

This is normal. There is a clinical menu and a patient menu. The stuff you see by default is the stuff you can set in the patient menu. However, clinical menus for machines are easy to find and once you have the clinical menu, you'll be able to get into the clinical menu and change your own therapeutic settings. However, you need to know what you are changing, why you are making a change, and the goal of making the change---i.e. what you hope to accomplish by making the change.

If you are interested in getting the clinical menu for your machine, you should post the exact name and model of the machine you are using to the forum. Someone will come along and tell you how to get hold of the clinical menu.

You also write:

The first couple days were awful. I have nasal pillows and they are so uncomfortable. I wanted a mask, but no one asked me what I wanted. I found I had a tendency to wake up in the night and take the mask off to go pee, and then "give myself a break" by waiting a couple minutes to put the mask back on - during which I of course fell asleep, reducing the effectiveness of the treatment. And just yesterday I learned I had been wearing the mask wrong all this time: I thought the plastic strap went on the back of the head, and the fabric strap went on the top, but it turns out it's the other way around.

Sheesh. Yet another example of DME incompetence. How the heck can a DME set you up with a mask and NOT teach you the way the mask is supposed to be worn.

Post the name and model of the mask you are using and you'll get a lot of tips for making it fit better. Also if you are still using the nasal pillows and you still don't like them, you should immediately call the DME and demand that they swap the nasal pillows mask for a different mask of your choice. The mask manufacturers allow users to return a mask to the DME and get a different maks within 30 days if the original mask is not working out. But this requires the DME to file a bunch of paperwork in order for the DME to get a refund for the mask that didn't work out.

The nocturia seems like it's gotten a little better over the past 3 weeks, going from an average of 4 times a night to an average of 2 times a night but last night I had a flare up that was as bad as anytime I've ever had it. I got up 8 times. I did have a pretty big apnea event the previous morning: after waking up at 5am I decided to get one more hour of sleep without the mask and thought I could get away with it by sleeping on my side. I woke up at 6am with my heart pounding and knew I had made a mistake. I don't know if the apnea event in the morning would release enough ANP to cause severe nocturia later that night, but it's the only correlating factor I have to hang my hat on.

It's possible that the "one more hour of sleep without the mask" caused problems for the rest of that night.

My events were 2.1 per hour last night. ResMed doesn't break it down any further than that unfortunately, so I don't know if that's a cluster or how it's calculated.

Depending on which ResMed PAP you are using, there may be a lot more data available, but getting at that data will require software rather than just the web-based Resmed site. But some ResMed machines don't record any additional data beyond the unbroken down AHI. We need to know exactly which ResMed model you are using in order to determine how much data is available.

I'm a little anxious that the nocturia hasn't seen more dramatic improvement after 21 days of treatment, but I also recognize the first couple days of treatment I didn't sleep at all, I had to figure out how to stop removing the mask in my sleep, and wearing the mask wrong probably reduced the effectiveness somewhat (there was no leaks reported by the machine however).

Without seeing some of the data, all we can do is speculate. And some Resmed machines don't record any leak data. So until we know which Resmed machine you are using, we can't conclude anything about leaks.

But in general, you do need to figure out a way of not removing the mask in your sleep and then sleeping for long periods (an hour is a *long period*) without the mask on. Until you're sleeping all night with the mask on, the improvement in nocturia may continue to be a bit of "two steps forward, one leap backwards"

The sleep expert doctor said it could be six weeks before symptoms improve - but he didn't specify which symptoms.

You've got a much more honest sleep doctor than many of us have. While a few people feel better in terms of all their symptoms (including nocturia) right away, most people take several weeks to a couple of months to notice any real improvement. And a few of us take several months to a year before things really start to get better.

herefishy wrote:My apnea is well controlled after 10 years, but I still have a bit of nocturia, even frequency during the day.

Strictly speaking, nocturia is the need to frequently urinate at night---i.e. you frequently wake up from sleep needing to go right now.

Experiencing the frequent urge/need to urinate during the daytime is not nocturia. A better descriptor of the daytime problem is simply frequent daytime urination. It's a different symptom, and common causes can include overactive bladder, diabetes, bladder infections, kidney infections, enlarge prostate (in men), and plain old anxiety among other things.

@Pugsy: Thanks I'm just learning about Sleepyhead. I'll have to dig into this tonight after work. Optimizing seems to be the key here.

@Julie: I'm male. I've updated my profile. Tested for both diabetes and prostate. Negative on both counts. OSA is still the most likely cause, but of course I'm a bit anxious - can't help it.

@AMK: I have the resmed AirSense 10, which appears to be supported by Sleepyhead.

@herefishy: I'll look into this if I can't get improvement by other means. I would like to address the cause, not the symptoms. A little bit of nocturia (1-2x) I can live with. 8 times a night is not sustainable.

@robysue:

It's possible that the "one more hour of sleep without the mask" caused problems for the rest of that night.

To clarify: I grabbed the hour of sleep without the mask from 5-6am and woke up to a clear sign of apnea (severe heart pounding). The problems I encountered were last night - I went to bed around 11:45pm (18-19 hours later). I'm wondering if the ANP lingers long enough to cause problems the next night...

Thank you very much all of you for the responses and advice.

glowradar wrote: @AMK: I have the resmed AirSense 10, which appears to be supported by Sleepyhead.

Which AirSense 10? There are the following models in the AirSense 10 line:

AirSense 10 CPAP (no data except for an unbroken down AHI and no leak data if I recall correctly)
AirSense 10 Elite CPAP (full data)
AirSense 10 AutoSet (full data)
AirSense 10 AutoSet for Her (full data)

We need to know exactly which of these you have.

AirSense 10 AutoSet

When you have time please add your equipment to your profile like I have mine below
wiki/index.php/Registering_Equipment_in_User_Profile
Please use text option instead of the icony option...using text is a little less work for us.
Having what you use available at a glance lets us tailor responses better to suit your equipment instead of us having to do the dance and ask what you are using....saves time and lets us help you better and faster.

The AirSense 10 AutoSet is a full data machine. Give Sleepyhead a go to start with as I think it is easier for newbies to manage than ResScan but if you want ResScan just send me a private message.

I just posted this thread link to someone else because it showed a good example of clusters in REM sleep
viewtopic.php?f=1&t=88508&st=0&sk=t&sd= ... ster+child
Now the overall AHI was a bit uglier because I had so many clusters but all it would really take is 2 or 3 ugly clusters to maybe cause the nocturia and still have a less than 3 AHI.

Also...sometimes it's not how many events a person has but instead is how long those events happen to last that can be a problem.
Your machine will also give event duration in seconds...so it's possible to have not many actual events but those events to be prolonged and 1 event that lasts 45 seconds is just as much (if not more) of a problem than 3 events that last 15 seconds.

I got on the hose when I was 53. No diabetes, normal prostate, no other issues except severe obstructive sleep apnea. I took to the therapy like a duck to water. Nocturia, which meant 2-3 times/night, immediately ceased. I usually get up once around 0500 to pee, but so does my wife, and I don't think she has a prostate.

One thing I've noticed is that if I limit my water intake after dinner, I can often not have to get up to pee. And no caffeine after lunch helps, too.

I think the biggest change you will notice will occur only after you are comfortable with the machine/mask. Once you sleep soundly, you then have the best chance of not having nocturia.

You've come to the right place to get help.

@Pugsy My goodness this is extremely helpful! Thank you so much. I had just seen the other thread, learning more and more by the minute. Wish I didn't have to work today. Will update profile shortly.

@SlartyBartFast how often were you getting up before CPAP?

Add me to the "immediate relief from nocturia"... I just assumed it was prostate related even though I wasn't having any problems... 3-4 times per night I was getting up to pee. None of my doctors discussed this in relation to apnea, it was just something I noticed when I started treatment... within a week I was down to 0-1 times. It was here in the forum that someone finally explained it to me.