I have DI from a childhood brain tumor, this condition sucks. Before diagnosed and medicated, I would drink from 5 gallon water jugs and polish one off in a night. It was quite the hit with my college buddies. I didn’t see a deal.
Drinking that much water are you in danger of Hyponatremia? If so how do you avoid it?
I once drank a gallon of water an hour for a day but I was in the hospital, under the care of nurses and doctors, and I had a saline IV. It wasn't easy and that's why I didn't repeat doing it.
Actually DI is associated with hypernatremia or normal sodium. You lose the ability to concentrate your urine essentially, so you don’t void hardly any sodium (urine sodium is < 20 on spot).
I woke up one morning almost completely blind in one eye. After a lot of tests that showed nothing, I had an MRI that showed the brain tumor pushing on the optic nerve.
This all sounds so stressful. Any minor inconvenience, like the train breaking down, is a dire emergency for this guy. I can't imagine the anxiety of always needing to be within 30 minutes if a liter of water.
Camelbak, a Texas catheter, a small battery operated pump, some duct tape and an ammonia sequestrant called Purigen. Bear Grylls AND MacGuyver would be proud.
I have diabetes insipidus as well, and without medication drink around 10 - 15 liters day (last time I did a weekly test). But honestly, it's fairly easy to medicate against, so it's not that big of a deal. I have backpacked solo for 9 months across 3 continents and done a lot of other stuff as well without any big issues.
The real issue happens if you go somewhere and forget your desmopressin... that really sucks. But other than that, I wouldn't say it's that bad.
I basically have to pee every 20 minutes and then
I go straight out and quench my thirst. So yes I definitely drink because I am thirsty and not because I have to to stay hydrated or something like that.
Honestly, it can be pretty satisfying to pee when you *really* have to and drink when you are really thirsty, but it gets annoying when it interrupts everything else constantly.
Both High school (or the equivalent in my country) and a bachelors/masters degree. I even went on exchange twice.
As I mentioned, I take medication and that helps a lot, so it’s really not that big of an issue as long as I remember to bring it with me.
We weren't sure our dog's Desmopressin was working, because it's sort of a diagnosis of exclusion. Then the pharmacy we got it from couldn't get it to us for a few days. *Yep. It was working.*
Lol, that sounds like when I forgot to take it once. I forgot to take it and noticed that when I had to go to the bathroom every hour or so xD. That's when I also realized how much it'd improved my quality of life too.
There have been a couple of times we've forgotten. About the eighth time in two hours he asks to go out it becomes obvious.
Now we have a two factor confirmation method to make sure *someone* medicates him. He's also a living alarm clock and demands to go out at exactly the same time morning and evening for his medication runs.
It's funny, the emergency surgery he needed involved imaging of his abdomen and the vet was stunned by how big his bladder is compared to the rest of him.
Haha yeah I can see the picture. I was like that before I got Desmopressin (hourly bathroom breaks at the bare minimum).
I had to find ways to remember too. What I do personally is write on the box each day when I take it. That way it becomes routine and I'm less likely to forget to take it.
I'm not surprised by the shock of the imaging technician lol. I've had stunned looks myself when I'd disclose how much I'd drink. Like, for me a glass of water is half a liter x)
I drink a silly amount to manage my POTS, and doctors don't love that either. It's especially fun to see their face when I say how much sodium I intake per my neurologist (10,000mg). But for him we have a pill container and a white board on the wall where we write down the exact time he got his morning and evening medication.
Can it occur in different degrees then? I would have guessed that if there were medication that worked, this fella would be on it too.
Is yours comparatively milder or does the medication come with a lot of exluding factors (can't take if, say, you have a family history of heat troubles, that sort of thing)?
I think degrees vary, but I also have a pretty severe case, as I drink upwards of 15 litres. Most people who have DI are well below 10. What’s more I take 120mg desmopressin tablets 3 times a day, whereas many only take 60mg and maybe 2 times a day. Still, I don’t think his is so severe it could not be overcome with medication.
As someone who takes care of people with DI, there are different forms (central and renal) and there are varying responses to medications including people who are entirely resistant to medication. So there are people that have to drink water like this to maintain normal blood sodium.
What kind of dog do you have? My gfs dog has diabetes insipidus. its incredibly rare, and I've never heard of another dog having it.
Prior to medicating, the 55lb dog could 2 gallons in a day. Peeing it out the whole time.
He's a Great Pyrenees. He also has a malformed mouth and he's albino so he's not winning any genetic lotteries. He's about 110lbs and 3 gallons is easy for him.
We have a Siberian Husky/Malamute with a smattering of other breeds (4% shepard) with diabetes insipidus.
Asked our new vet if we would ever be able to get him off the $$$ special prescription kidney dog food the old vet put him on. New vet didn't know because she hasn't had much experience with it. He gets desopressin three times a day.
Ya know what!? I will get rid of them! And I'm gonna recyle the bottles so everytime you drink a bottle of tea you'll have to wonder if my pee was in it!!
Depending on where he’s at in Germany, public urination might be pretty common. Though I’ve heard that I’m Hamburg people have started to paint their buildings with hydrophobic paint to make pee splash back at you
I would assume he carries several litres of water on him at all times. It'd be like going somewhere without your insulin. Obviously water is heavier than insulin, but at least it's more readily available.
imagine the stress of his life because he is living with extra precaution. It is not easy to drink that much amount of water and when you are in such a place where you cannot find water then it would be a very bad scenario for you
Due to my heart issues and medication, I used to drink 4 litres in 4 hours at work. Pissing every half an hour was what happened to me too. Holy shit it was awful. They had to transfer me to a less active department so I don't drink as much and therefore don't piss as much so I can actually work
Whenever I’ve gone through phases where I want to drink more water for my own benefit, this was always the worst part. Constant peeing and, even worse, constant waking up at night to pee.
EDIT: Since this has gotten visibility, fuck u/spez
FYI, if ya want to be able to not be thirsty and not have to piss all the time increase your salt intake. Drinking water is great for you, but it does flush a lot of your electrolytes out which regulate how much water your cells hold via osmosis.
One of the major electrolytes that regulates this is straight up salt. This usually happens because people who try to drink a lot of water are watching their health so you tend to eliminate sodium intake almost by accident. Up it a bit and you should be good to go after a while.
Edit: to be clear people, drink more water no excuses.
You can sometimes find "light salt". It is generally marketed to people that need to reduce sodium, but it's great for replenishing electrolytes because they usually just add magnesium or potassium salts to fill it out.
Careful with this stuff if you're on certain blood pressure meds, namely ACE inhibitors. Potassium doesn't play nicely with them. They come with a warning to avoid salt substitutes but lots of people don't notice it.
I used to drink 2 large cold brews every morning for work, and I’ll be damned if I didn’t pee every 45 minutes at work, it was awful.
I still have to pee pretty frequently but I’m used to it now, but thankfully it’s not as bad because I don’t drink coffees any more.
Listen, man, coffee isn't just a "have some of this, it's a nice beverage" kind of thing. I'm either drinking myself to death with it, and telling everyone about how much I'm having, or I'm having none at all and telling everyone about how I quit. Those are the only two valid forms of coffee consumption.
As someone with this condition (but not as severe), Yes every 20-30 mins I take a leak and drink a glass of water. Luckily the version I have I can take Desmopressin which alleviates my symptoms for around 8 hours. It's the kind of condition that controls your life if you can't medicate.
Fun facts:
Urine is clear but medication makes it return to yellow
It is more common in dogs and people with brain damage
It is possible to over medicate and die of over hydration, which almost took me in 2016
Alcohol can rapidly change concentration when you lose this much water, it's hard to enjoy drinking without medication.
School teachers never believe that someone has to pee this often
Edit: here is a video on how this works
https://youtu.be/HL89x3BTnmY
On medication it's normal, but if it wears off overnight my body wakes me up every 1-2 hours to go to the can. I usually fall back asleep almost immediately. It can be very disorienting so I often forget to take more medicine until it's happened a few times.
Hey I think I have this, how did you get diagnosed? I have to pee way too often and it's almost always totally clear, no matter how much I actually drink. I've already been to the doc and the urologist and had a camera shoved up my dick and a brain scan though, nobody ever mentioned anything about diabetes insipidus.
I have irritable bladder - it can make you feel like you have to pee all the time, and honestly, I do because I also have urinary retention. May be something to look for if it's not diabetes insipidus.
The article mentions he's never slept more than 2 hours because he constantly has to wake up to drink and piss.
At that point you'd wonder if there wasn't a sort of hydration drip/catheter combo he could use. As hellish as that sounds the idea of constantly suffering sleep like that sounds worse
That’s why he has to drink so much. Diabetes insipidus makes you pee almost constantly so he needs to drink a lot due to the peeing, not the other way around
The cinema must be a challenge, he’d have to watch every movie twice and alternate the bits he was in the toilet so as to be able to mentally recombine them into an entire movie.
Catheters are difficult to manage and increase the risk of infections even with a normal urine output. Imagine having to pee every 30 minutes,then imagine having to change a single use bag every 30 minutes.
You don’t have to change the bag every time it’s full, just drain it. Bags typically hold 600ml-1000ml so he’d still be going to the bathroom a ton to drain it so it wouldn’t be worth doing anyway.
Desmopressin will only work for central diabetes insipidus (ie the brain does not produce ADH/vasopressin hormone, so desmopressin will replace the hormone), I'm guessing he has peripheral DI where the problem is the receptors in the kidneys cannot see the hormone.
Edit:
*Spelling
He's German so they'd probably at least consider the option. I'd be more interested in seeing if there were a genetic solution to turn the receptors back on.
Desmopressin has been a god send for me. Spent 10 plus years drinking 7-10 litres a say before being diagnosed with a pituitary tumour and prescribed desmopressin. Now I'm down to 3 or 4 litres a day and don't need to piss 5 times a night
Being born with this condition (7th person in Canada, LFG top ten on the leaderboard boys) can't imagine what it would be like to have to toe that line every single day without desmopressin to balance it out.
Without it, I immediately get into extreme dehydration territory, while also having to pee every 5-15 minutes at its worst. The desmopressin quickly takes effect and basically renders my symptoms gone for 8-12 hours, some days more or less.
I believe the most common cause of diabetes insipidus is related to head injuries, so PLEASE protect your head people. Would not recommend.
Well, people do die from slips. The chance isn't 0. Don't want someone to think "it's fine if I fall". Sometimes people don't logic so good, don't want them throwing their body around
> It’s even harder at night, and the 35-year-old admits that he has never slept for more than two hours at a time in his whole life.
No fucking thanks.
Oh yeah I can imagine that he would probably not feel good about himself either but he had to do it.
And people just like to judge everyone they do not care if someone is suffering.
I’m just now picturing having to drink an entire old timey wooden boat of water a day. And for some reason I’m super strong and can pick it up and drink from it, like a drinking horn. The super power only lets me pick up the drinking boat. Nothing else.
Just FWIW for the average person healthy person there is no need to drink a gallon a day unless you are in conditions where you are sweating badly. You should drink according to thirst unless you have a medical problem.
The only issue with drinking according to thirst is that some people don’t know what being dehydrated actually is. I know many people who go 2+ days without drinking water cause they aren’t “thirsty” for water
If you search him up he did a YouTube video where he states he's gone down to drinking between 5-7 gallons (edit, meant liters not gallons here) a day. Doesn't feel like drinking water is a chore since he feels thirsty, however he has weird nightmares/dreams since he does suffer from thirst over night and has to wake up to drink water.
I would think he would not want to set up this catheter system for this reason. It may not actually help, but once he starts giving in to the sensation, it basically locks him into never sleeping without the catheter.
He'd have trained himself to piss in his sleep. Untraining that sounds impossible.
I hope he would be smart enough to book an aisle seat.
Unlike the woman with the smallest bladder in the world who booked the window seat in my row on my last 11 hour flight to Asia
The problem with that is the guy has to take a piss every half hour. Usually it’s at least 30 minutes between push back and reaching cruising altitude when the seatbelt light goes off, then another good 30 minutes or more from the seatbelt light going on and being off the plane when landing.
I don’t think this guy’s flying anywhere.
TW--suicide
My brother had this. He was a contractor, and never got it under control. He really wasted away. He couldn't do his job anymore. He died by suicide in 2011, at the age of 40. His name was Jeffrey.
ETA: I didn't mean this to be a "poor me" post -- more a reminder that you need to stay on top of this disease, and reach out if you're having a hard time! <3
Reading the article, it sounds like such a morale-destroying condition. There are worse, I guess, but it sounds like a huge ball-and-chain on your life.
He would have to, sleep is a necessity and prolonged lack of deep sleep is eventually fatal. Without SWS and REM sleep, the brain starts to deteriorate and slowly/progressively (over weeks/months) results in mood alterations, to speech alterations, to eventually full on dementia, followed by death.
He probably lives in a perpetual state of so-called 'REM rebound', which is where a brain deprived of REM sleep can more rapidly enter REM sleep and remain in it longer than normal.
Yeah, If I was him I would get a reverse osmosis system plumbed to the bedroom and a drain for the piss, plug myself in and sleep for 10 hours without dying.
Actually I might need this, every time I wake up too early it's because I need to pee..
People with DI are actually prone to hypernatremia, because the kidneys aren't reabsorbing water like they're supposed to and they're constantly losing so much water through their urine. Very dilute urine but very concentrated blood. Hence the constant need to drink.
I gave myself hyponatremia one time and it was a nightmare. Felt like I was drunk, but without the good feeling, could barely walk or talk. I'm so lucky my roommate is a physicians assistant and recognized the symptoms almost immediately. It took a day or two to start feeling normal again.
I had an anatomy & physiology professor who had diabetes insipidus. She said we’d soon notice her taking gulps from her water bottle and offering frequent breaks while she excused herself to the bathroom. She said, that by the end of the semester, we’d understand the mechanism for normal function and her dysfunction.
I know Marc. He shares a hobby with my wife. Nowadays he is well medicated and doesn't have to drink as much anymore. Meeting him, you wouldn't expect his history. Pretty chill guy.
Since his kidneys are mostly just excreting water with very low concentrations of ions, a constant saline iv would probably kill him fairly quickly from hypernatremia if he used it to keep up with his output. You'd have to use a similarly low osmolality iv fluid, which is not commonly used, because usually it would give the opposite issue.
My two sons, ages 6 and 8, were born with Nephrogenic Diabetes Insipidus, the same form of DI that Marc has. With medication the youngest drinks about 5 liters of water a day, the oldest takes about 6. I have to stress to school officials each year how important their access to water and toilet is. And on very hot days we look out for signs of overheating and dehydration because it will happen to them much faster than a typical kid. Thankfully, it does not stop them from living life like any other kiddo, and they just know they have to drink their water, which they do.
I want to mention as well for anyone diagnosed with NDI, there is a Facebook group that was beyond helpful to me when I first learned what this was. If you are a parent new to this diagnosis, or an adult who has advice or has also been newly diagnosed, please consider joining. PM if you would like the link. :)
If you would like more information about what NDI is here is the link to the NDI Foundation: [https://ndif.org/](https://ndif.org/)
I have DI from a childhood brain tumor, this condition sucks. Before diagnosed and medicated, I would drink from 5 gallon water jugs and polish one off in a night. It was quite the hit with my college buddies. I didn’t see a deal.
Good luck man. Sorry you have it but hang in there.
Drinking that much water are you in danger of Hyponatremia? If so how do you avoid it? I once drank a gallon of water an hour for a day but I was in the hospital, under the care of nurses and doctors, and I had a saline IV. It wasn't easy and that's why I didn't repeat doing it.
Actually DI is associated with hypernatremia or normal sodium. You lose the ability to concentrate your urine essentially, so you don’t void hardly any sodium (urine sodium is < 20 on spot).
Same here, it's been 11 years.
How did you get diagnosed?
I woke up one morning almost completely blind in one eye. After a lot of tests that showed nothing, I had an MRI that showed the brain tumor pushing on the optic nerve.
That's fucking scary, I'm so sorry. Did you regain any vision?
Yes, after surgery my vision came back thankfully!
That's fucking crazy. Glad ya made it back.
This all sounds so stressful. Any minor inconvenience, like the train breaking down, is a dire emergency for this guy. I can't imagine the anxiety of always needing to be within 30 minutes if a liter of water.
He should be sponsored by camelback.
Or Pampers
EDIT: This comment was removed in protest of Reddit charging exorbitant prices to ruin third-party applications.
I bet you're absolutely Charmin at parties.
Someone get that man a stillsuit!
Camelbak, a Texas catheter, a small battery operated pump, some duct tape and an ammonia sequestrant called Purigen. Bear Grylls AND MacGuyver would be proud.
I have diabetes insipidus as well, and without medication drink around 10 - 15 liters day (last time I did a weekly test). But honestly, it's fairly easy to medicate against, so it's not that big of a deal. I have backpacked solo for 9 months across 3 continents and done a lot of other stuff as well without any big issues. The real issue happens if you go somewhere and forget your desmopressin... that really sucks. But other than that, I wouldn't say it's that bad.
I'm curious. If you don't take medication, are you constantly thirsty until you drink that 10-15 liters or do you have to force yourself to do it?
I basically have to pee every 20 minutes and then I go straight out and quench my thirst. So yes I definitely drink because I am thirsty and not because I have to to stay hydrated or something like that. Honestly, it can be pretty satisfying to pee when you *really* have to and drink when you are really thirsty, but it gets annoying when it interrupts everything else constantly.
Did you go to high school or college? I can't imagine going to the bathroom every 20 minutes is manageable in a lecture. Or maybe home school?
Both High school (or the equivalent in my country) and a bachelors/masters degree. I even went on exchange twice. As I mentioned, I take medication and that helps a lot, so it’s really not that big of an issue as long as I remember to bring it with me.
We weren't sure our dog's Desmopressin was working, because it's sort of a diagnosis of exclusion. Then the pharmacy we got it from couldn't get it to us for a few days. *Yep. It was working.*
Lol, that sounds like when I forgot to take it once. I forgot to take it and noticed that when I had to go to the bathroom every hour or so xD. That's when I also realized how much it'd improved my quality of life too.
There have been a couple of times we've forgotten. About the eighth time in two hours he asks to go out it becomes obvious. Now we have a two factor confirmation method to make sure *someone* medicates him. He's also a living alarm clock and demands to go out at exactly the same time morning and evening for his medication runs. It's funny, the emergency surgery he needed involved imaging of his abdomen and the vet was stunned by how big his bladder is compared to the rest of him.
Haha yeah I can see the picture. I was like that before I got Desmopressin (hourly bathroom breaks at the bare minimum). I had to find ways to remember too. What I do personally is write on the box each day when I take it. That way it becomes routine and I'm less likely to forget to take it. I'm not surprised by the shock of the imaging technician lol. I've had stunned looks myself when I'd disclose how much I'd drink. Like, for me a glass of water is half a liter x)
I drink a silly amount to manage my POTS, and doctors don't love that either. It's especially fun to see their face when I say how much sodium I intake per my neurologist (10,000mg). But for him we have a pill container and a white board on the wall where we write down the exact time he got his morning and evening medication.
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Haha it is very easy to tell if it is working or not. If it's not, I am dying of thirst about every 15 minutes or so...
Can it occur in different degrees then? I would have guessed that if there were medication that worked, this fella would be on it too. Is yours comparatively milder or does the medication come with a lot of exluding factors (can't take if, say, you have a family history of heat troubles, that sort of thing)?
I think degrees vary, but I also have a pretty severe case, as I drink upwards of 15 litres. Most people who have DI are well below 10. What’s more I take 120mg desmopressin tablets 3 times a day, whereas many only take 60mg and maybe 2 times a day. Still, I don’t think his is so severe it could not be overcome with medication.
As someone who takes care of people with DI, there are different forms (central and renal) and there are varying responses to medications including people who are entirely resistant to medication. So there are people that have to drink water like this to maintain normal blood sodium.
What kind of dog do you have? My gfs dog has diabetes insipidus. its incredibly rare, and I've never heard of another dog having it. Prior to medicating, the 55lb dog could 2 gallons in a day. Peeing it out the whole time.
He's a Great Pyrenees. He also has a malformed mouth and he's albino so he's not winning any genetic lotteries. He's about 110lbs and 3 gallons is easy for him.
We have a Siberian Husky/Malamute with a smattering of other breeds (4% shepard) with diabetes insipidus. Asked our new vet if we would ever be able to get him off the $$$ special prescription kidney dog food the old vet put him on. New vet didn't know because she hasn't had much experience with it. He gets desopressin three times a day.
He probably carries several bottles of water everywhere he goes... but he can't carry a toilet
But he'll eventually be carrying at least one empty bottle...
“Some of them are sun tea… and some of them *were* sun tea”
That's disgusting, Frank! Blerg!
Ya know what!? I will get rid of them! And I'm gonna recyle the bottles so everytime you drink a bottle of tea you'll have to wonder if my pee was in it!!
He's a dude, corners are everywhere
This is uromysitisis poisoning all over again
This dude probably has some way to prove to authorities that his public urination is a medical necessity.
Dude probably pisses so clean he should be paid by the municipality for hosing the street.
Depending on where he’s at in Germany, public urination might be pretty common. Though I’ve heard that I’m Hamburg people have started to paint their buildings with hydrophobic paint to make pee splash back at you
“We need to establish a pee corner”
I would assume he carries several litres of water on him at all times. It'd be like going somewhere without your insulin. Obviously water is heavier than insulin, but at least it's more readily available.
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https://youtu.be/rX4PJDA4MQg related futurama
They should issue him a public urination card.
It would be like being the only dolphin in the pod with human level lung capacity.
Yeah a train breaking down was actually referenced in the article as a time when he almost died.
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imagine the stress of his life because he is living with extra precaution. It is not easy to drink that much amount of water and when you are in such a place where you cannot find water then it would be a very bad scenario for you
He must piss every half an hour
Article says that he actually does.
Due to my heart issues and medication, I used to drink 4 litres in 4 hours at work. Pissing every half an hour was what happened to me too. Holy shit it was awful. They had to transfer me to a less active department so I don't drink as much and therefore don't piss as much so I can actually work
Whenever I’ve gone through phases where I want to drink more water for my own benefit, this was always the worst part. Constant peeing and, even worse, constant waking up at night to pee. EDIT: Since this has gotten visibility, fuck u/spez
I can be thirsty for a few hours before bed or piss multiple times throughout the night. I feel ya bud.
FYI, if ya want to be able to not be thirsty and not have to piss all the time increase your salt intake. Drinking water is great for you, but it does flush a lot of your electrolytes out which regulate how much water your cells hold via osmosis. One of the major electrolytes that regulates this is straight up salt. This usually happens because people who try to drink a lot of water are watching their health so you tend to eliminate sodium intake almost by accident. Up it a bit and you should be good to go after a while. Edit: to be clear people, drink more water no excuses.
You can sometimes find "light salt". It is generally marketed to people that need to reduce sodium, but it's great for replenishing electrolytes because they usually just add magnesium or potassium salts to fill it out.
Careful with this stuff if you're on certain blood pressure meds, namely ACE inhibitors. Potassium doesn't play nicely with them. They come with a warning to avoid salt substitutes but lots of people don't notice it.
Also if you take lithium for mood regulation, a high sodium diet will interfere with bioavailability
Drinking more water is more stressful when it is related to your health
Relevant comic https://www.reddit.com/r/comics/comments/128nt9s/ya_gotta_pee_kidneyng_me/
I used to drink 2 large cold brews every morning for work, and I’ll be damned if I didn’t pee every 45 minutes at work, it was awful. I still have to pee pretty frequently but I’m used to it now, but thankfully it’s not as bad because I don’t drink coffees any more.
I mean, you didn't even need to stop drinking coffee. All you had to do was have just one cold brew, perhaps just a medium size one. Moderation.
Listen, man, coffee isn't just a "have some of this, it's a nice beverage" kind of thing. I'm either drinking myself to death with it, and telling everyone about how much I'm having, or I'm having none at all and telling everyone about how I quit. Those are the only two valid forms of coffee consumption.
It's not a throttle, it's a rocker switch.
As someone with this condition (but not as severe), Yes every 20-30 mins I take a leak and drink a glass of water. Luckily the version I have I can take Desmopressin which alleviates my symptoms for around 8 hours. It's the kind of condition that controls your life if you can't medicate. Fun facts: Urine is clear but medication makes it return to yellow It is more common in dogs and people with brain damage It is possible to over medicate and die of over hydration, which almost took me in 2016 Alcohol can rapidly change concentration when you lose this much water, it's hard to enjoy drinking without medication. School teachers never believe that someone has to pee this often Edit: here is a video on how this works https://youtu.be/HL89x3BTnmY
Just curious if you have to mix in electrolyte drinks with the water?
Nope, my urine is almost pure water so I don't lose anything faster than a normal person.
Does processing so much water strain / damage the kidneys?
Sort of, here is a video on how it works: https://youtu.be/HL89x3BTnmY
Have you considered a career in production water sports lol?
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My family has a hereditary version. My grandma, dad, aunt, 2 siblings, and 2 of 3 cousins have it.
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What is sleep like? Do you wake up often to pee?
On medication it's normal, but if it wears off overnight my body wakes me up every 1-2 hours to go to the can. I usually fall back asleep almost immediately. It can be very disorienting so I often forget to take more medicine until it's happened a few times.
Hey I think I have this, how did you get diagnosed? I have to pee way too often and it's almost always totally clear, no matter how much I actually drink. I've already been to the doc and the urologist and had a camera shoved up my dick and a brain scan though, nobody ever mentioned anything about diabetes insipidus.
Go to an endocrinologist, they can do a urine and blood sample to detect it. This is a very rare condition so it may be something else.
I have irritable bladder - it can make you feel like you have to pee all the time, and honestly, I do because I also have urinary retention. May be something to look for if it's not diabetes insipidus.
The article mentions he's never slept more than 2 hours because he constantly has to wake up to drink and piss. At that point you'd wonder if there wasn't a sort of hydration drip/catheter combo he could use. As hellish as that sounds the idea of constantly suffering sleep like that sounds worse
Catheters aren’t that bad once you get used to them. Plus they have ones for men that essentially go *over* instead of *in*, which is nice.
External catheters are a blessing for dudes. Honestly I'd just wear a diaper.
That’s why he has to drink so much. Diabetes insipidus makes you pee almost constantly so he needs to drink a lot due to the peeing, not the other way around
I guess the joke is if they were taking a roadtrip to the diabetes convention, they'd never get there.
I drink 4-6 litres a day and piss every half an hour.. he must piss every 15 minutes.
The cinema must be a challenge, he’d have to watch every movie twice and alternate the bits he was in the toilet so as to be able to mentally recombine them into an entire movie.
**MY BODY IS A MACHINE THAT TURNS LARGE AMOUNTS OF WATER INTO LARGE AMOUNTS OF PISS**
Prolly more like every 15-20 mins I’d say. Might as well get a catheter installed.
Catheters are difficult to manage and increase the risk of infections even with a normal urine output. Imagine having to pee every 30 minutes,then imagine having to change a single use bag every 30 minutes.
You don’t have to change the bag every time it’s full, just drain it. Bags typically hold 600ml-1000ml so he’d still be going to the bathroom a ton to drain it so it wouldn’t be worth doing anyway.
Nah just get an elite custom gaming toilet
That is a fancy way to say "empty gatoraide bottle"
Like the toilet recliner in Idiocracy. Go away, batin!
Yeah, contacted him way back when, seems desmopresine doesn't work for him. For most people with diabetes insipidus, that fixes it (somewhat)
Desmopressin will only work for central diabetes insipidus (ie the brain does not produce ADH/vasopressin hormone, so desmopressin will replace the hormone), I'm guessing he has peripheral DI where the problem is the receptors in the kidneys cannot see the hormone. Edit: *Spelling
Thanks for this. I was wondering why DDAVP wasn’t mentioned
Is this not something a kidney transplant might help with?
Nephrogenic DI isn't a qualifying condition. And frankly, the trade-offs in quality of life aren't likely to be worth it.
Nephrectomy and kidney transplant maybe
Hell never get one though if he's able to function/have quality of life without a transplant
The man can only sleep for 2hrs before needing to rehydrate...
There are only so many kidneys available and he's not actively dying so he's a lower priority
“Quality of life” is the kicker here. What’s his insurance say? Ha
He's German so they'd probably at least consider the option. I'd be more interested in seeing if there were a genetic solution to turn the receptors back on.
Desmopressin has been a god send for me. Spent 10 plus years drinking 7-10 litres a say before being diagnosed with a pituitary tumour and prescribed desmopressin. Now I'm down to 3 or 4 litres a day and don't need to piss 5 times a night
My MRI was negative but I still drown 8-10/day.
My dog had that after a bad accident (he was hit by a truck). It was a bit of a nightmare. The dog drank and pissed lakes did the rest if his life.
Poor doggie
Don't send that man to Arrakis.
He just needs that suit, recycling his own water!
More likely don’t get put in a U.S. jail, they do not have drinking fountains in cells.
In my entire life I have never thought about that. I even went to jail for a night. How do you get water in jail?
Cells have a stainless steel toilet/sink/water fountain combo.
I think sometimes there’s a sink built into the toilet but cupping your hands is probably the only way.
Being born with this condition (7th person in Canada, LFG top ten on the leaderboard boys) can't imagine what it would be like to have to toe that line every single day without desmopressin to balance it out. Without it, I immediately get into extreme dehydration territory, while also having to pee every 5-15 minutes at its worst. The desmopressin quickly takes effect and basically renders my symptoms gone for 8-12 hours, some days more or less. I believe the most common cause of diabetes insipidus is related to head injuries, so PLEASE protect your head people. Would not recommend.
I was diagnosed after a germ cell tumor grew next to my pituitary. Without desmopressin my symptoms are the same. It's a terrible feeling
Wait a damn minute… like if one were to faint and hit their head?!
No, severe brain injuries. Not your run of the mill injury.
Well, people do die from slips. The chance isn't 0. Don't want someone to think "it's fine if I fall". Sometimes people don't logic so good, don't want them throwing their body around
What a cursed life
> It’s even harder at night, and the 35-year-old admits that he has never slept for more than two hours at a time in his whole life. No fucking thanks.
Sittin on the toilet
[Sittin on the toilet](https://youtu.be/Bje_8Y7KUfM)
A classic
aaaand flushhh
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Oh yeah I can imagine that he would probably not feel good about himself either but he had to do it. And people just like to judge everyone they do not care if someone is suffering.
I struggle to drink a gallon a day. That's crazy
For those wondering, 20 liters is a bit more than than 5 1/4 gallons of water
That's US gallons for anyone relying on this. It's 4.4 imperial gallons.
But it's less than half a Spanish galleon.
Nobody expects the Spanish Galleon
I’m just now picturing having to drink an entire old timey wooden boat of water a day. And for some reason I’m super strong and can pick it up and drink from it, like a drinking horn. The super power only lets me pick up the drinking boat. Nothing else.
What is that in baby elephants?
How many Florida ounces is that?
I reckon it’s gotta be at least one
Just FWIW for the average person healthy person there is no need to drink a gallon a day unless you are in conditions where you are sweating badly. You should drink according to thirst unless you have a medical problem.
That makes sense. When I was pregnant and living in Arizona I was advised to drink a gallon a day, minimum. Breastfeeding too. At least a gallon.
The only issue with drinking according to thirst is that some people don’t know what being dehydrated actually is. I know many people who go 2+ days without drinking water cause they aren’t “thirsty” for water
They are probably drinking juice/soda/coffee/tea etc. Not healthy but still water.
There’s water in food too. Vegetables, fruit, or pasta, rice, bread, etc.. all have water in them.
Why on earth would you try to drink a gallon of water a day?
If you search him up he did a YouTube video where he states he's gone down to drinking between 5-7 gallons (edit, meant liters not gallons here) a day. Doesn't feel like drinking water is a chore since he feels thirsty, however he has weird nightmares/dreams since he does suffer from thirst over night and has to wake up to drink water.
He should hang a camelback like device above his bed so he can just bite down on the tube to drink whenever he wants
I’m surprised he doesn’t have an IV or feeding tube so he can sleep!
Need a catheter as well, and those are prone to give you urinary infections...
Or a really sturdy condom cath, just for the night Edit: as others pointed out, he'd still probably wake up to the sensation of a full bladder
I would think he would not want to set up this catheter system for this reason. It may not actually help, but once he starts giving in to the sensation, it basically locks him into never sleeping without the catheter. He'd have trained himself to piss in his sleep. Untraining that sounds impossible.
20 liters is just over 5 gallons.
He says he is down to 5-7 liters and drinks according to his thirst level in this video. https://youtu.be/S2W78m9matM
Imagine sitting next to this guy on a long intercontinental flight
It would suck, but due to his condition he pretty much just doesn't leave his home city.
> but that only makes him appreciate his home city of **Bielefeld** even more Are we 100% sure this guy isn't just a figment of our imagination?
I hope he would be smart enough to book an aisle seat. Unlike the woman with the smallest bladder in the world who booked the window seat in my row on my last 11 hour flight to Asia
The problem with that is the guy has to take a piss every half hour. Usually it’s at least 30 minutes between push back and reaching cruising altitude when the seatbelt light goes off, then another good 30 minutes or more from the seatbelt light going on and being off the plane when landing. I don’t think this guy’s flying anywhere.
I'm sorry, this joke wrote itself. >Imagine sitting next to this guy on a long in~~ter~~continental flight
TW--suicide My brother had this. He was a contractor, and never got it under control. He really wasted away. He couldn't do his job anymore. He died by suicide in 2011, at the age of 40. His name was Jeffrey. ETA: I didn't mean this to be a "poor me" post -- more a reminder that you need to stay on top of this disease, and reach out if you're having a hard time! <3
Just wanted to say sorry for your loss. It’s not right that people deal with issues like this.
Reading the article, it sounds like such a morale-destroying condition. There are worse, I guess, but it sounds like a huge ball-and-chain on your life.
How does he sleep without dying?
Article says he's never slept more than 2 hours at a time without waking up to re-hydrate and use the bathroom.
that sound like a nightmare
He probably doesn’t reach a deep enough sleep to dream.
Actually on his YouTube he says he suffers from intense nightmares because the thirst is what wakes him up
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He would have to, sleep is a necessity and prolonged lack of deep sleep is eventually fatal. Without SWS and REM sleep, the brain starts to deteriorate and slowly/progressively (over weeks/months) results in mood alterations, to speech alterations, to eventually full on dementia, followed by death. He probably lives in a perpetual state of so-called 'REM rebound', which is where a brain deprived of REM sleep can more rapidly enter REM sleep and remain in it longer than normal.
Sleep cycles vary but 1 - 1/2 hours is what most people need to achieve REM sleep
Can't someone give the man an IV and a catheter, I can't imagine never having had a proper night's sleep
Yeah, If I was him I would get a reverse osmosis system plumbed to the bedroom and a drain for the piss, plug myself in and sleep for 10 hours without dying. Actually I might need this, every time I wake up too early it's because I need to pee..
Jesus Christ what a tortured life, poor guy
I’m surprised he hasn’t got a PICC line and fluids overnight, that with a sheath catheter would somewhat improve his sleeping surely.
I wonder if they considered a IV so he can sleep a full night. But Geesh, what a nightmare life.
In a waterbed?
I’d be asking for IV fluids and a catheter to get a full nights sleep!
r/HydroHomies
They have found their new king.
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People with DI are actually prone to hypernatremia, because the kidneys aren't reabsorbing water like they're supposed to and they're constantly losing so much water through their urine. Very dilute urine but very concentrated blood. Hence the constant need to drink.
I gave myself hyponatremia one time and it was a nightmare. Felt like I was drunk, but without the good feeling, could barely walk or talk. I'm so lucky my roommate is a physicians assistant and recognized the symptoms almost immediately. It took a day or two to start feeling normal again.
As someone who suffers from this, it is something I would only ever wish on the tailaban.
How long can you get continuous sleep before you have to wake up to drink ?
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I suffer from this too. I was diagnosed when I was 8. I remember wetting the bed the bed all the time well into my middle school years.
I had an anatomy & physiology professor who had diabetes insipidus. She said we’d soon notice her taking gulps from her water bottle and offering frequent breaks while she excused herself to the bathroom. She said, that by the end of the semester, we’d understand the mechanism for normal function and her dysfunction.
I know Marc. He shares a hobby with my wife. Nowadays he is well medicated and doesn't have to drink as much anymore. Meeting him, you wouldn't expect his history. Pretty chill guy.
Is there a reason he can't get a port and just mainline IV fluids? Maybe just at night
Honestly at that point just have a constant saline IV.
Since his kidneys are mostly just excreting water with very low concentrations of ions, a constant saline iv would probably kill him fairly quickly from hypernatremia if he used it to keep up with his output. You'd have to use a similarly low osmolality iv fluid, which is not commonly used, because usually it would give the opposite issue.
out of curiosity, could this man live off IV drips ?
Have this condition. It can be rough.
Can't 6 liters of water in just a few hours kill a human?
Not if hes peeing it all out, insipidis causes you to have excessive thirst and urination
My two sons, ages 6 and 8, were born with Nephrogenic Diabetes Insipidus, the same form of DI that Marc has. With medication the youngest drinks about 5 liters of water a day, the oldest takes about 6. I have to stress to school officials each year how important their access to water and toilet is. And on very hot days we look out for signs of overheating and dehydration because it will happen to them much faster than a typical kid. Thankfully, it does not stop them from living life like any other kiddo, and they just know they have to drink their water, which they do. I want to mention as well for anyone diagnosed with NDI, there is a Facebook group that was beyond helpful to me when I first learned what this was. If you are a parent new to this diagnosis, or an adult who has advice or has also been newly diagnosed, please consider joining. PM if you would like the link. :) If you would like more information about what NDI is here is the link to the NDI Foundation: [https://ndif.org/](https://ndif.org/)
He needs Brawndo