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Nocturia is driving me nuts
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Route67 Offline

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Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #1
Nocturia is driving me nuts
Hello all, a little history here....

Diagnosed with OSA last August after more than a year battling Nocturia.

I was living abroad so it was difficult to get a proper diagnosis for that year, but upon arrival back in the states I did a sleep study and was started on CPAP in August and have been using it right up until now.

As with many of us, the 'getting used to it' phase was difficult; it took me 3 or 4 months to be able to really sleep well with it on, but by January or February I figured I was "cured". As long as I used the mask I could sleep normally again for the first time in 2 years, and my Nocturia - for me, getting up 5 or 6 times per night to urinate - seemed to be gone; I even canceled my most recent appointment with the sleep clinic in March, telling the receptionist there was no need to waste the Doc's time.

Boy, was I wrong! Last night and in fact for the past 2 weeks or so I have been back to my old habits, IE; sleeping no more than 1.5 to 2 hours before I need to relieve myself; and this is with the CPAP on and working fine.

It's making me crazy again, no joke; no more stage 4 sleep, no more relaxing days, just back to always being tired and feeling like garbage; and again, this is WITH the CPAP machine on! Which had seemingly cured me for 4 or 5 blissful months.

I have read up a lot about Nocturia, about how our bodies release some type of peptide which makes our kidneys release urine to compensate for the fluid overload in our hearts; the best article I have found to describe it exactly is here;
http://www.nocturiacures.com/

My question; do others here still have Nocturia even while using the CPAP, and is there some kind of medicine I could be taking to stop the release of this naturally-occurring Atrial Natriuretic Peptide?

I have tried bladder-control medicines in the past but none worked, and I have also re-scheduled with my Doc to see what he says or if my machine needs to be adjusted....although it's already at a very high setting because my Apnea is considered ''severe''.

In the meantime, back to sleepless nights and crappy-feeling days uggghhhh
05-26-2013 10:34 AM
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OMyMyOHellYes Offline

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Machine: Respironics 560 Auto
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Location: Texas

Post: #2
RE: Nocturia is driving me nuts
CPAP or APAP? Other changes (sinus problems, weight gain/loss, change in sleeping position or mask leaks?) Does your PAP appliance reprot data and trends?

Sometimes the conditions requiring use of CPAP change over time. I know when I was on fixed CPAP, my pressure requirement would change with my weight. So, after a couple weeks of bad sleep (if accompanied by weight change of 10-20 lbs), I would adjust pressures little by little until I was back to sleeping well. This titration had resulted in a setting that increased from 9 to 11 cm H2O. When I got the AutoSet, I found that my 95% pressure was ... drum roll ... 11 cm H2O.

Others have reported the need for frequent night urination was greatly relieved by proper PAP therapy. Just one factor to consider...

OMyMyOHellYes
05-26-2013 12:55 PM
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Route67 Offline

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Machine: S9 AutoSet
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Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #3
RE: Nocturia is driving me nuts
OK, thanks a lot, and as for recent changes there really haven't been any. No sinus problems, no allergies, same bed, my tubing and masks and filters are all relatively new, etc....

My machine is a CPAP, same as yours a Resmed 9.

I can go see my medical supplier on Tuesday and they may be able to read my card and set it a new way for me, any idea's until then? 2 more nights will be extremely rough and honestly I don't know how to change the titration or anything else on my machine and I am worried I will really make it worse if I play around. Thanks again, much appreciated.
(This post was last modified: 05-26-2013 01:28 PM by Route67.)
05-26-2013 01:28 PM
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Route67 Offline

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Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #4
RE: Nocturia is driving me nuts
By the way, for anyone else reading this thread; do most of us here have Nocturia?

Before PAP therapy were you also going to the bathroom every 2 hours [or more] at night?

Super-frustrating....
05-26-2013 01:40 PM
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iSnooze Offline
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Post: #5
RE: Nocturia is driving me nuts
Before cpap I would go to the bathroom twice or 3 times a night. I thought it was just part of getting older and I drink a lot of water or tea. Since I started cpap therapy most nights I sleep straight through or wake up only once.

Has your doctor told you why you have Nocturia? Is this a genetic trait? Can it be treated without medications that cause damaging effects? Does it still happen if you don't drink anything several hours before going to bed?
05-26-2013 02:04 PM
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zonk Offline

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Post: #6
RE: Nocturia is driving me nuts
(05-26-2013 10:34 AM)Route67 Wrote:  My question; do others here still have Nocturia even while using the CPAP, and is there some kind of medicine I could be taking to stop the release of this naturally-occurring Atrial Natriuretic Peptide?
Before CPAP used to get up frequently to pee, now once but some nights none

See urologist and get some urine and blood test for prostate
You can try cut down on caffeine drinks and not to eat or drink 4/5 hours before bedtime

Also might be something else cropped up and wake you up
Leaks, mask discomfort, AHI, insomnia, air feel too cold/hot, ...
05-26-2013 04:44 PM
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Route67 Offline

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Posts: 68
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Machine: S9 AutoSet
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CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #7
RE: Nocturia is driving me nuts
If you could see how much fluid intake I have cut back on you would be amazed; not only at night but even in the daytime. I was never a drinker so it has nothing to do with beer or alcohol, and the only liquid I take in at night is some water around 9 or 10 for a midnight sleep time. I also don't drink ANY coffee at all, never have.

I even went to a kidney specialist, a Nephrologist, and he did all sorts of tests and found nothing wrong and I was on bladder-control meds for a while, which did nothing.

Check out that link I posted, Atrial natriuretic peptide is actually released in some patients [and certainly in my case] when our lungs do not take in enough air due to the uvula flap. The right atrium of the heart perceives this as a direct threat to the body, and it must do something quickly to counteract this signal of a fluid overloaded state by sending a signal to the kidneys to make more urine to relieve the fluid overload.

I am 100% sure this is what is happening with me, and anyone who doesn't have this special little treat to go along with their apnea is darn lucky.

I will inquire about some new meds this week, I am re-scheduling with my sleep Doc and will also see a Urologist. The frustrating thing is I thought I was all cured; a month and 2 months ago I was doing great and I thought the nocturia was gone for good, the fact that it has come back tells me it's something with the CPAP equipment or within the settings.
(This post was last modified: 05-26-2013 05:38 PM by Route67.)
05-26-2013 05:37 PM
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jgjones1972 Offline

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Post: #8
RE: Nocturia is driving me nuts
Before PAP I had to go urinate 4 or five times per night. Nocturia went away completely after the first night on PAP and has not returned.

Pressure leaks would be one think to look for to make sure the PAP is still effective.

Pressure on your profile says "Auto", but doesn't give pressure range. Is it set "wide open" (4cmH2O - 20cmH2O), or is maximum pressure set lower than 20? You should probably take a look at the pressure chart to make sure you aren't flat lining at max and not getting enough pressure to splint the airway.
05-27-2013 08:18 AM
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Sleepster Offline
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Post: #9
RE: Nocturia is driving me nuts
(05-26-2013 10:34 AM)Route67 Wrote:  I even canceled my most recent appointment with the sleep clinic in March, telling the receptionist there was no need to waste the Doc's time.

I would call them and schedule a new appointment. Just explain that the symptoms went away for several months and now they've returned.

The doctor can run tests to rule out other causes.

Have you noticed any change in your AHI or pressure requirements that coincide with the changes in your symptoms?

Sleepster
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05-27-2013 11:55 AM
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Route67 Offline

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Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #10
RE: Nocturia is driving me nuts
Just called the sleep clinic and they are squeezing me in at 1130!

Haven't been this excited since I retired.....

Thanks all, I really hope I can get back on the proper track
05-28-2013 08:29 AM
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