Nocturia and drug treatment

[leebee]

Hi all,

Hoping for some feedback- I was diagnosed with severe OSA in November 2017 - average 87 AHI per hour. I’ve suffered from nocturia for many years and was delighted to think cpap might end that for me. I started cpap immediately, have been stringent and consistent with my use, and all the stats are great (average .5 - 1 AHI per hour now). I’m also finally able to lose weight and have so far lost 7kg of fat and increased muscle mass.

I do feel somewhat better physically, I’m still regularly tired though and most significantly, I am still experiencing consistent nocturia every night. I am voiding a reasonable amount in 2 - 3 trips each night - we’re not talking about a trickle. I do also go frequently during the day - on average about every 1.5 - 2 hours - although I do think that’s because I do a lot of morning exercise and drink a ton of water. I don’t drink anything much at all after about 6pm. I had all my blood work done recently - no blood sugar issues or other medical indicators for the issue.

I was then referred to a sleep specialist who charged me $270 to give me a script for stilnox (heavy grade sleep drug) and nuvigil (daytime wakefulness drug for people with narcolepsy and residual tiredness from treated OSA), along with a range of sleep hygiene actions, most of which I was already doing. In her opinion, my waking and voiding is habitual and the drugs are intended to “break the cycle” of waking and being tired. Three nights in with stilnox and I’m still waking 2 times (around 2am and 5am) to pee. I’ve only just started the nuvigil this morning so I can’t comment on it’s efficacy for wakefulness. I do have a follow up with her, so I will continue with her recommendations for a week or so. However, I have to admit to being quite sceptical about it.

So, I’m curious to ask if there’s anyone else here in a similar situation? I’d love to know if this treatment approach of “uppers and downers” has actually helped anyone else long term?
Any other professional opinions on my ongoing nocturia/frequent urination issue? Thanks for any and all feedback!

Leah

[Julie]

If your sig. line is not out of date, your min. pressure is only 5, which is very low as far as therapeutic effect goes. Have you never tried raising it by a couple of cms?

[leebee]

If your sig. line is not out of date, your min. pressure is only 5, which is very low as far as therapeutic effect goes. Have you never tried raising it by a couple of cms?

Thanks Julie, yes I have tried that. It didn’t make any difference to my waking/nocturia and I find the starting pressure of 5 is just right for me. 7 was a little too much.

[BTS]

If your sig. line is not out of date, your min. pressure is only 5, which is very low as far as therapeutic effect goes. Have you never tried raising it by a couple of cms?

Thanks Julie, yes I have tried that. It didn’t make any difference to my waking/nocturia and I find the starting pressure of 5 is just right for me. 7 was a little too much.

I was thinking your pressure levels looked low as well, but if they're working out for you then stick with them ....

[Pugsy]

While sleep apnea is one known cause of nocturia it sure isn't the only known cause.

If it were me I would be talking to the doctor about maybe over active bladder in view of the frequency of urination during the day as well as night time.
IMHO...I would have done that before going with the uppers and downers.

Have you ever talked to your doctor about over active bladder syndrome?

I see nothing that you have said that would cause me to advise a change in pressure....and you say you have already tried more pressure and it didn't help with the nocturia anyway. Unless you are maybe having some stuff go on that isn't part of the AHI that might be causing arousals and as part of the arousal the "might as well go pee" habit kicks in....and that's going out on a long skinny limb.
I am not so sure it is habit anyway.

More pressure isn't the fix for all problems and I see no sense in using it without proof of need.

[leebee]

While sleep apnea is one known cause of nocturia it sure isn't the only known cause.

If it were me I would be talking to the doctor about maybe over active bladder in view of the frequency of urination during the day as well as night time.
IMHO...I would have done that before going with the uppers and downers.

Have you ever talked to your doctor about over active bladder syndrome?

I see nothing that you have said that would cause me to advise a change in pressure....and you say you have already tried more pressure and it didn't help with the nocturia anyway. Unless you are maybe having some stuff go on that isn't part of the AHI that might be causing arousals and as part of the arousal the "might as well go pee" habit kicks in....and that's going out on a long skinny limb.
I am not so sure it is habit anyway.

More pressure isn't the fix for all problems and I see no sense in using it without proof of need.

Thanks pugsy - I’ve spent considerable time adjusting my pressure up, down and everywhere in between. My AHI’s all remain very low and the only difference for me personally is comfort level. I study sleepyhead religiously and there’s absolutely no correlation between my AHI’s and waking. So agreed, pressure is not the answer here.

I did see the doctor about it originally and he’s the one who ordered the blood tests, then after nothing suspicious came back, he sent me to the specialist. Perhaps I need to stress to the doctor that the daytime frequency seems high too. TBH I’m only really noticing how high since starting a tracking journal as part of the drug test. As I mentioned, I do think it’s higher on days of exercise with lots of water (I exercise almost every day). Non exercise days it would be more like every 3-4 hours. I do need to get some solid tracking going there so I actually have facts though, granted. Hrmmmm. Inclined to stop taking the stilnox before I make things harder on myself!

[Julie]

Have you had a cystoscopy?

[leebee]

Have you had a cystoscopy?

No, I haven’t and hadn’t actually heard of this procedure. Another suggestion to discuss with the doctor in follow up appointment! Thank you

[mesenteria]

Your kidney function is controlled by a hormone called ADH, or Anti-Diuretic Hormone. When younger, we produce more ADH while we sleep so that we don't have to void during the night. As life goes on, our endocrine function declines and, among other things, our pituitary glands don't secrete enough ADH to keep us from voiding once, twice, or thrice a night.

I am not aware of a routine prescription to replace or boost ADH for people whose quality of life is adversely affected by low levels of ADH and the resultant increased throughput of the kidneys. I'm not a physician, so it may be that they do have a trick of offer. I've never had to ask because, even at my ripe old age, I sleep only with apnea, and even that didn't result in having to rise each night. No idea why.

I'd ask what, besides not taking anything by mouth after about 1700 hours each day, the doctor can suggest for you.

[scruffies]

I also have suffered from nocturia and have been on CPAP for about 3 months. CPAP has reduced my nighttime pee trips to maybe one (before usually 3-4), but I was still going too frequently during the day, about every 1 to 1.5 hours. I went to a new urology doctor about a month ago and in that initial visit he took a urine sample to test, but also had me really try to fully empty my bladder and then did a scan to make sure it was empty, and it was. That process suggested that the plumbing was most likely OK. He then said he thought I had an over-active bladder, perhaps as a result of years of untreated OSA.

He wrote a script for me to try: Oxybutynin ER 10mg 1X

I am noticing a difference. Less frequent bathroom trips during the day, less urgency, and I have slept thru the night a few times without getting up at all! I still am having insomnia issues sometimes, but at least it's not because my bladder is waking me up. As I understand it, this med relaxes the bladder. Maybe when I have been on CPAP longer, and my brain has fully adapted to no longer being aroused every 45 seconds (my sleep test AHI was 96), my bladder will calm down enough that I can stop taking the med. But in the meantime, it is helping.

Hope this helps leebee.

[ChicagoGranny]

I do also go frequently during the day - on average about every 1.5 - 2 hours - although I do think that’s because I do a lot of morning exercise and drink a ton of water. I don’t drink anything much at all after about 6pm.

You are probably drinking too much water. Check your urine color before you go to bed. If it is lighter than #3, cutting back on water consumption may solve your problem.

I was then referred to a sleep specialist who charged me $270 to give me a script for stilnox (heavy grade sleep drug) and nuvigil

Malpractice!

[Julie]

Hi - about a zillion cystos are done daily on a trillion people... 99% under local, if not v. slight sedation. Had one, it was a breeze, don't know why your MD hasn't suggested it yet. I would NOT decide arbitrarily based on the previous note to not drink as much water as you want, need or can. That can be far more dangerous to your system!

[ChicagoGranny]

I would NOT decide arbitrarily based on the previous note to not drink as much water as you want, need or can.

There was nothing arbitrary about it. If he follows the urine color chart, there is no danger from drinking less water.

On the other hand, when you say "drink as much water as ... you can",

A 2005 study in the New England Journal of Medicine found that close to one sixth of marathon runners develop some degree of hyponatremia, or dilution of the blood caused by drinking too much water. ... Where did people get the idea that guzzling enormous quantities of water is healthful? A few years ago Heinz Valtin, a kidney specialist from Dartmouth Medical School, decided to determine if the common advice to drink eight, eight-ounce glasses of water per day could hold up to scientific scrutiny. After scouring the peer-reviewed literature, Valtin concluded that no scientific studies support the "eight x eight" dictum (for healthy adults living in temperate climates and doing mild exercise). In fact, drinking this much or more "could be harmful, both in precipitating potentially dangerous hyponatremia and exposure to pollutants, and also in making many people feel guilty for not drinking enough," he wrote in his 2002 review for the American Journal of Physiology—Regulatory, Integrative and Comparative Physiology. And since he published his findings, Valtin says, "not a single scientific report published in a peer-reviewed publication has proven the contrary."

https://www.scientificamerican.com/arti ... -can-kill/

KISS

[Julie]

Fine, I absolutely agree we shouldn't do things on a one-size-fits-all all the time... but in real life people with either kidney and/or urinary problems are much better off to err on the side of too much until told otherwise by their doctor. I don't agree that some chart on the net with lurid colors is a great way to get medical advice.

[leebee]

Thanks to all for the comments. In response to several points.

You are probably drinking too much water.

Apologies, I should have quantified my water intake with more clarity in the first post. I drink at most a total of around 1 litre during and within the hour or so after my morning exercise, which is fairly intense stuff like boxing and weight lifting where I'm doing a lot of sweating. I then probably drink (at most) another 500ml throughout the day. As mentioned in my first post, I drink almost nothing after about 6pm. I promise you that I could drink practically nothing all day and would still pee more than other people I know and would still wake 2-3 times a night. I don't believe water intake to be the issue, but thank you for taking the time to comment.

Hope this helps leebee.

Scruffles, I read your comment with great interest, thank you for posting your experience. I feel we may be in a similar position - extremely high AHI's pre cpap, potentially many years of undiagnosed apnea and the havoc that wreaks on the system. I'm seeing the doctor again today and will be talking to him about the things you've mentioned, as well as Julie's suggestion of a cytoscopy. Thanks again.