Nocturia

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Originally Posted by tgapp

ha, don't take that advice, it's total horseshit.

i actually did give up one of my two kidders because of a post on reddit (was drunk in bed when i agreed to it and then i couldn't go back on my word), and now i gotta wake up all the time in the middle of the night to pee. so this is patently bad advice.

but i do now know what all those fancy numbers around GFR and creatine clearance and shit mean, so there's that.

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There's a good story here.

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Originally Posted by old goat

There's a good story here.

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ha yep, probably the best part about the story is that i ended up going touring with my surgeon. nice lady. i even talked her into lapping beartrap a few times, so she wasn't a total dentist. strangest way i ever met a touring partner.

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Originally Posted by Dantheman

Been awhile since I updated my self-pity blog:

Drank ~6 oz of water with dinner last night around 6:00 pm, my last fluid intake of the night. Previous fluid intake before that was ~8 oz of water at about 2:30. Peed in the shower around 7:30, full bladder. Emptied another full bladder right before bed at 9:30. Emptied another full bladder at 10:15, then another at 11:20, another at 1:30 am, another at 4:30, and another at 6:30. How in the fuck is that possible?

That's not necessarily typical, I usually make it until at least close to midnight before I first have to void and void 3-4x total, but multiple voids before midnight happens at least once every 10-14 days. On Xmas eve I somehow made it to 3:30 am. I have no idea when the last time was that I didn't wake up to void until that late, a true Xmas miracle.

Since my sleep gets interrupted so much I need at least 9.5-10 hours in bed each night to accumulate enough sleep to feel good. I made the mistake of doing some math the other day--compared to sleeping 8 hours per night that works out to an extra 23-30 24-hour days per year I spend in bed. Sobering.

I saw my PCP for a physical in early November. All bloodwork was excellent. Talked to him about this issue specifically again. Based on my lack of response to DDAVP he thinks my kidneys are just insensitive to ADH. He offered to refer me to a nephrologist, but also said:

1. In general they're not that interested in treating polyuria.
2. There's probably not anything they can do to help me anyway.
3. If I did see one they'd probably want to MRI my kidneys ($$). Benign adrenal tumors are common, so there's a decent chance the MRI would show some kind growth on my adrenal gland(s). If the MRI shows something they'll probably want to biopsy it to be sure it's not malignant, thus necessitating a likely unnecessary surgical biopsy ($$$$+risks involved with abdominal surgery).

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To Dantheman

Dantheman

I sympathise regarding Nocturia polyuria

I too pee pints every night even when I STOP ALL fluids during the day

Example
1. Absolutely no fluid intake from 10am to bed time 10pm

2. Pee very little during day (Probably water from food, salads etc)
3. Void prior to bed - 10pm
4. 1st void 11.39 full bladder (300ml)
5. 2nd void 1am full bladder (200ml)
6. 3rd void 2am full bladder ((225ml)
7. 4th void 3.19am full bladder (250ml)
8. 5th void 5 am full bladder ((170ml)
9. 6th void 6.20am (150ml)

On average - time of voids change but most nights always 5 times plus, worst case 9 times
Volume measure on average 3pints (worst 4pints of fluid)

Doctors are baffled, tried everything despopressin and others, seen urologists and taken every possible so called cure

The doctors (jack of all trades master of none) do not have a clue on how to help or really understand the condition,
Water deprecation test - normal (release if vasmopresdin normal / supposedly)
All docs think it’s in our heads and suggest mental health issue. Most are not understanding of Nocturia

I am very fit 50 years of age, work and play hard eat an incredibly healthy diet, do not drink or smoke.

Despite all the above the British Nhs doctors Refuse to brain scan of potruity gland in middle of brain or check kidneys

It’s a joke. There are as many people who suffer from this condition Nocturia (more than 2 urine voids a night) than cancer and no reasearch if this medical condition that will cost Nhs millions over next decade

It’s unbelievable. I really do not know where to turn next - my condition has been slowly progressing over last 7 years from 2 voids to worst case 9 voids (average 5 voids)

Where are you in the World?

Please respond
Rutty

you are just pissing your life ( and your money ) away

I didnt realize Diabetes makes you piss more ?

As an old fuck with type II under control with diet/ who likes coffee/ beer/ wine/ eats OK/ probably doesnt drink enough water i have to get up a couple of time a night which seems reasonable

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Originally Posted by rutty

To Dantheman

Dantheman

I sympathise regarding Nocturia polyuria

I too pee pints every night even when I STOP ALL fluids during the day

Example
1. Absolutely no fluid intake from 10am to bed time 10pm

2. Pee very little during day (Probably water from food, salads etc)
3. Void prior to bed - 10pm
4. 1st void 11.39 full bladder (300ml)
5. 2nd void 1am full bladder (200ml)
6. 3rd void 2am full bladder ((225ml)
7. 4th void 3.19am full bladder (250ml)
8. 5th void 5 am full bladder ((170ml)
9. 6th void 6.20am (150ml)

On average - time of voids change but most nights always 5 times plus, worst case 9 times
Volume measure on average 3pints (worst 4pints of fluid)

Doctors are baffled, tried everything despopressin and others, seen urologists and taken every possible so called cure

The doctors (jack of all trades master of none) do not have a clue on how to help or really understand the condition,
Water deprecation test - normal (release if vasmopresdin normal / supposedly)
All docs think it’s in our heads and suggest mental health issue. Most are not understanding of Nocturia

I am very fit 50 years of age, work and play hard eat an incredibly healthy diet, do not drink or smoke.

Despite all the above the British Nhs doctors Refuse to brain scan of potruity gland in middle of brain or check kidneys

It’s a joke. There are as many people who suffer from this condition Nocturia (more than 2 urine voids a night) than cancer and no reasearch if this medical condition that will cost Nhs millions over next decade

It’s unbelievable. I really do not know where to turn next - my condition has been slowly progressing over last 7 years from 2 voids to worst case 9 voids (average 5 voids)

Where are you in the World?

Please respond
Rutty

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^^ this post deserves to be nominated as one of the greatest first posts on TGR of all time

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Originally Posted by rutty

On average - time of voids change but most nights always 5 times plus, worst case 9 times
Volume measure on average 3pints (worst 4pints of fluid)
...
Where are you in the World?

Please respond
Rutty

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Damn, that's rough. Your best night is my worst night. I'm in Salt Lake City, Utah.

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Originally Posted by XXX-er

I didnt realize Diabetes makes you piss more ?

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Excess glucose in your blood is so damaging that your body starts excreting it through urine. IIRC, diabetes mellitus literally translates to "sweet urine." Doctors used to diagnose it by tasting patients' urine.

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Originally Posted by tgapp

^^ this post deserves to be nominated as one of the greatest first posts on TGR of all time

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Threads here can rank surprisingly high in Google search results.


I tried using the oximeter over the weekend. I had issues with it staying on and connected to my phone and only got a couple hours of good data. The data I did get showed pretty stable SpO2 without any large dips that would indicate apneic episodes. I'll try it a few more times this week. Average HR was 47 bpm.

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Originally Posted by tgapp

ha yep, probably the best part about the story is that i ended up going touring with my surgeon. nice lady. i even talked her into lapping beartrap a few times, so she wasn't a total dentist. strangest way i ever met a touring partner.

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Please start a new thread with this story.

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Originally Posted by tgapp

^^ this post deserves to be nominated as one of the greatest first posts on TGR of all time

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Why’s that ? I’m looking for answers and hoping that a solution to this problem of Nocturia can be found from those who suffer from it also? Sharing experiences and therapies can work for some and not others?
Did not expect childish comments like this one from people who don’t suffer with Nocturia.

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Originally Posted by rutty

Did not expect childish comments like this one from people who don’t suffer with Nocturia.

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have you tried Depends?

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Originally Posted by Dantheman

Damn, that's rough. Your best night is my worst night. I'm in Salt Lake City, Utah.



Excess glucose in your blood is so damaging that your body starts excreting it through urine. IIRC, diabetes mellitus literally translates to "sweet urine." Doctors used to diagnose it by tasting patients' urine.



Threads here can rank surprisingly high in Google search results.


I tried using the oximeter over the weekend. I had issues with it staying on and connected to my phone and only got a couple hours of good data. The data I did get showed pretty stable SpO2 without any large dips that would indicate apneic episodes. I'll try it a few more times this week. Average HR was 47 bpm.

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Have you found a cure yet or a way of atleast reducing the urine volume/ void amounts So you can sleep uninterrupted?

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Originally Posted by rutty

Why’s that ? I’m looking for answers and hoping that a solution to this problem of Nocturia can be found from those who suffer from it also? Sharing experiences and therapies can work for some and not others?
Did not expect childish comments like this one from people who don’t suffer with Nocturia.

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hey rutty, my apologies - i did not mean to be offensive or rude! TGR is a pretty laidback place, and we all give each other good-natured ribbing from time to time. your post was both informative and well-written; a modern classic in the genre of veritable of nightpissery. what a way to make a debut in the forum!

DTM and you have to deal with some seriously frustrating shit it sounds like - i can't even imagine; i had no idea how bad Nocturia is. best of luck to both of you in figuring out a treatment plan which helps with those symptoms.

on a non-medical note, do y'all have those automatic toilet bowl lights? those things are a goddamn lifesaver.

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Originally Posted by tgapp

hey rutty, my apologies - i did not mean to be offensive or rude! TGR is a pretty laidback place, and we all give each other good-natured ribbing from time to time. your post was both informative and well-written; a modern classic in the genre of veritable of nightpissery. what a way to make a debut in the forum!

DTM and you have to deal with some seriously frustrating shit it sounds like - i can't even imagine; i had no idea how bad Nocturia is. best of luck to both of you in figuring out a treatment plan which helps with those symptoms.

on a non-medical note, do y'all have those automatic toilet bowl lights? those things are a goddamn lifesaver.

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Apology accepted - however in my book anyone who does not suffer from a medical condition ribbing someone who’s life is made misery of having that condition - well I hope they get it! Irrespective of whether it’s Nocturia polyuria, cancer, Ms or any other disease for that matter. Then they may understand themselves what it’s like to suffer along with the jokers who rib?

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Originally Posted by rutty

Apology accepted - however in my book anyone who does not suffer from a medical condition ribbing someone who’s life is made misery of having that condition - well I hope they get it! Irrespective of whether it’s Nocturia polyuria, cancer, Ms or any other disease for that matter. Then they may understand themselves what it’s like to suffer along with the jokers who rib?

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hey man, to be clear, i wasn't speaking poorly of you or your condition, i was only commenting that you had a fantastic first post here! that's all.

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Originally Posted by rutty

Have you found a cure yet or a way of atleast reducing the urine volume/ void amounts So you can sleep uninterrupted?

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Nope.

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Originally Posted by tgapp

DTM and you have to deal with some seriously frustrating shit it sounds like - i can't even imagine; i had no idea how bad Nocturia is.

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Unlike a lot of medical conditions this one is easy to simulate. Set up a series of alarms that wake you up every 2-3 hours every night and you'll pretty much know what it's like.

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Originally Posted by rutty

Apology accepted - however in my book anyone who does not suffer from a medical condition ribbing someone who’s life is made misery of having that condition - well I hope they get it! Irrespective of whether it’s Nocturia polyuria, cancer, Ms or any other disease for that matter. Then they may understand themselves what it’s like to suffer along with the jokers who rib?

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Chill out. This forum is not a "safe space" and that's exactly the reason why most of us post here. Even the most serious medical conditions often create the opportunity for an objectively good joke among friends, and laughing at your own misery is cathartic and healthy, so just thicken your skin a little bit and you'll be fine.

Also, members with a single post are often bots and the posts that are real people are typically clueless, moronic, wildly off-topic, or all of the above. Yours was none of those and tgapp's post was a genuine compliment.

Thanks

I came on here because for the 1st time somebody described their suffering as if I had written it (Dantheman)

There must be other genuine people who suffer like us having to urinate all night large unexplained volumes (Nocturia polyuria) with no real answers or solutions from the medical profession.

The condition is tiresome, slowly gets worse, causes early death from the onset of other diseases, and Trauma caused by falling over as one goes into old age.

I’m looking to join people together with this specific condition who have found some successful treatment or improved this the condition somehow?

I do not believe that there is no cure unless damage to brain or organs have proceeded to far by accident or disease.

I myself am very fit, and eat a healthy diet, do not drink or smoke - healthy otherwise - this condition however has a massive impact in my general well-being of tiredness and occasional fatigue

Surely me and Dantheman are not the only two people in the world that have identical symptoms along with ZERO answers from doctors

I’m here to find others with Nocturia Polyuria that’s all

Feel free people to copy and paste this across the world on as many forums as possible linking it somehow to me on this site

I’m looking for a solution I want to be heard by the Global medical profession that is failing us!?

Please help by spreading the message for we need to be heard and stronger in numbers - we can no longer be ignored

Much appreciation to those who take this post seriously and for those that mock it - I hope you develop this condition

Take care people
Stay safe In this difficult covid 19 time
Rutty

Hey, Rutty, just so you are aware this website is primarily a discussion group for skiers, who sometimes also discuss medical issues they are having and other things. So, while it is cool that you seem to have a problem similar to Dan, it is probably unlikely that you’ll find a lot of answers here for your problem. Maybe a website devoted solely on medical issues would yield better results.

Also, these guys are a crusty lot, and tend to give each other shit on a regular basis. It’s expected, and you aren’t going to change that.

You are welcome to post here. I’m just trying to set your expectations appropriately.

Oh, and by the way, I happen to be wearing Depends myself at the moment, as a result of a recent surgery. They work quite well.

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Originally Posted by rutty

Much appreciation to those who take this post seriously and for those that mock it - I hope you develop this condition

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Chill. The. Fuck. Out.

Hey, I was not surprised that when I needed neck surgery and my hand was going numb it was enthusiastically pointed out the “stranger” benefits.

There is levity in everything. Even rain after a powder day


Sent from my iPhone using TGR Forums

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Originally Posted by billyk

Hey, Rutty, just so you are aware this website is primarily a discussion group for skiers, who sometimes also discuss medical issues they are having and other things. So, while it is cool that you seem to have a problem similar to Dan, it is probably unlikely that you’ll find a lot of answers here for your problem. Maybe a website devoted solely on medical issues would yield better results.

Also, these guys are a crusty lot, and tend to give each other shit on a regular basis. It’s expected, and you aren’t going to change that.

You are welcome to post here. I’m just trying to set your expectations appropriately.

Oh, and by the way, I happen to be wearing Depends myself at the moment, as a result of a recent surgery. They work quite well.

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Weirdly gimp central tends to pick up people who find this forum for specific injuries. I think the tibial plateau fracture thread comes up as one of the higher results for example

Hi there, i came across your post and im having the exact same problems! Wondering if you have found anything that has helped??

I am pretty desperate. I've seen a urologist, physio and a range of doctors. They are all perplexed.

Thanks mate, any help would be appreciated. Hope you are doing better.

You've come to the right/wrong place ........

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Originally Posted by m5b640

Hi there, i came across your post and im having the exact same problems! Wondering if you have found anything that has helped??

I am pretty desperate. I've seen a urologist, physio and a range of doctors. They are all perplexed.

Thanks mate, any help would be appreciated. Hope you are doing better.

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I have not. My total doc count to date is six--my GP, an internist, two urologists, a nephrologist and a sleep specialist (outpatient sleep study showed no signs of OSA). The only avenue I haven't fully explored was a suggestion by the fuckstick nephrologist to see an endocrinologist and have a Water Deprivation Test done. The WDT sounded very involved and expensive, and when asked what actionable information could be obtained from said investment of time and money his only response was that they may be able to prescribe thiazide diruetics. If you read up on thiazide it sounds like a cure that is worse than the disease, FTS.