• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Has anyone been diagnosed with Primary Polydipsia (compulsive water drinking)?

Messages
74
Hello everyone

Has anyone else here been ‘diagnosed’ with ‘primary polydipsia’? Primary Polydipsia is thought of as a supposed psychological compulsion to drink excessive fluids in the absence of any physiological need. It is supposedly associated with severe mental ill-health, including schizophrenia.

This happened to me 18 months ago. I hospitalised myself following episodes of severe thirst and urination over the preceding months. When I say ‘severe’, I mean severe: my whole body screaming with thirst, 10 litres of urine in a night, no sleep, feeling like I would not make it to the morning light. These episodes only occurred during PEM. In the hospital, my blood sodium was found to be 116. Somehow I was still walking and talking, if disoriented.

I’m fairly sure there is a kind of polydipsia going on in ME/CFS, the mechanisms of which have not been mapped out yet, and that perhaps, at least some of the time, what has always been thought of as compulsive water drinking may be the excessive thirst ME/CFS somehow causes. In other words, a case of historical misdiagnosis because, as is so often the case, when the medical profession doesn't understand something yet, it resorts to the 'you're crazy' card.

The hospital normalised my blood sodium and it has stayed within normal ranges ever since. I’m very grateful for that. At the same time, I was treated like a mental case throughout (‘You are only in here because you were drinking so much water’, ‘You can’t go to the toilet as you’ll drink water behind our backs’). I even overheard the doctor and nursing staff laughing about their primary polydipsiac case in the hallway.

It was an awful week in the hospital. My sodium levels over-corrected themselves too quickly and, the doctors fearing cerebral swelling, said they had to be diluted again by IV drip. Bloods were taken every two hours morning and night. I was told they had never seen a case quite like me.

I went through episodes of severe thirst over the previous six months, probably around a dozen in all, each of which felt potentially life-threatening. They were a nightmare. And, for my trouble, at the end of it all I have a psychological compulsion to drink excessive fluids on my medical record. Nothing I tried to communicate about thirst in ME/CFS or downregulated fluid retention hormones was taken seriously. My discharge letter said ‘Patient admitted with self-diagnosed ME’ (which is untrue, I had been diagnosed two years prior).

Has anyone else experienced this ‘diagnosis’? What was your experience?
 
Messages
764
Location
Israel
I was diagnosed with it by an endocrinologist. She basically lied saying I drink 4-5 litres a day then made this diagnosis. I don't drink that much and not more than the average person. It's easier for her lie then actually treat. I am too weak to go through a complaint procedure against her. I decided to see a 2nd endocrinologist privately and hope he doesn't believe her and actually treat me seriously.

I have consistantly low sodium in blood tests and low blood pressure as part of my CFS that is constantly ignored for 20 years.
 

Rufous McKinney

Senior Member
Messages
13,456
Primary Polydipsia is thought of as a supposed psychological compulsion to drink excessive fluids in the absence of any physiological need. It is supposedly associated with severe mental ill-health, including schizophrenia.

my new neighbor, I strongly suspect.
 
Messages
32
Yes, I was diagnosed with psychogenic polydipsia by a world-renowned endocrinologist. I was drinking 2 gallons of water per day. I was also diagnosed with congenital neutropenia by a hematologist, which supposedly made me more susceptible to illness. I also had a 10+ year history of amenorrhea and was given female hormones for years. The doctors of endless specialities were ALL wrong ... all these issues resolved once I was given thyroid medication (despite normal labs). Specifically, I required both Armour Thyroid and Levothyroxine. This all happened before I developed severe ME/CFS in 2013, which resulted in me becoming predominantly bedridden. You can read about this in my Case Report (https://pubmed.ncbi.nlm.nih.gov/34828583/). I was able to recover after 4.5 years of treatment (under the care of a MD, PhD) and return to grad school in 2017. However, I did relapse soon after resuming grad school (but that's another story). Nonetheless, I just finished my PhD at the University of Southern California, so there is hope. I am not 100% recovered, but I am improving.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I’m fairly sure there is a kind of polydipsia going on in ME/CFS

Unfortunately, polydipsia is a fake diagnosis invented by psychiatrists who don't understand hypothalamic dysfunction or diabetes insipidus. There is no scientific basis to a diagnosis of polydipsia.


It sounds like a severe lack of vasopressin, the hormone that helps your body hold on to water.

There's a name for it, diabetes insipidus.

That's correct. Hypothalamic dysfunction, including diabetes insipidus, is a very common feature of ME:

Very common in cfsme. Drink like fish and pee like a race horse. Possibly diabetes insipidus.

Yes, this "diabetes insipidus" refers to a deficiency in the hormone vasopressin (AKA anti-diuretic hormone AKA ADH). But it has nothing whatsoever to do with what people commonly refer to "diabetes".

Basically, a disturbance in the hypothalamus (HPA axis) reduces the amount of vasopressin, which results in poor retention of water in the body.

This hypothalamic dysfunction is discussed here:
https://forums.phoenixrising.me/threads/is-your-hypothalamus-up-the-creek.81181/


I hope this helps!
 
Messages
74
It sounds like a severe lack of vasopressin, the hormone that helps your body hold on to water.

There's a name for it, diabetes insipidus.

Thanks for this. Extreme thirst can be caused by DI but wasn't in my case. In a hospital setting, so-called psychogenic polydipsia is distinguished from diabetes insipidus by a water deprivation test. If the patient can concentrate their urine after being restricted from all fluids, vasopressin release is considered intact and diabetes insipidus is ruled out. This happened with me. My feeling though is that in,my and other such cases there is still something else physiological going on that leads people to drink huge quantites of water, something probably to do with some other aspect of ME/CFS that we just don't understand very well yet.
 
Messages
74
Yes, I was diagnosed with psychogenic polydipsia by a world-renowned endocrinologist. I was drinking 2 gallons of water per day. I was also diagnosed with congenital neutropenia by a hematologist, which supposedly made me more susceptible to illness. .

Thanks so much for sharing this. I had read your case report before. I'm glad your health has overall improved so much and congrats on getting your PhD, no mean feat!
 

Zebra

Senior Member
Messages
886
Location
Northern California
Hi, @crussher

First of all, I am sorry to hear about your horrendous hospital experience.

I have not been diagnosed with "primary polydipsia," but I do experience excessive thirst and urination, and intermittent low sodium levels in blood serum. I have not had any sort of work up for this.

On my own, I've been looking into Syndrome of Inappropriate Antidiuretic Hormone secretion.

You seem very knowledgeable, but I'll go ahead and share a link to a recent paper on SIADH just in case you are not familiar with it. It is not uncommon in inflammatory conditions that affect the brain.

https://www.ncbi.nlm.nih.gov/books/NBK507777/
 

Violeta

Senior Member
Messages
3,006
Thanks for this. Extreme thirst can be caused by DI but wasn't in my case. In a hospital setting, so-called psychogenic polydipsia is distinguished from diabetes insipidus by a water deprivation test. If the patient can concentrate their urine after being restricted from all fluids, vasopressin release is considered intact and diabetes insipidus is ruled out. This happened with me. My feeling though is that in,my and other such cases there is still something else physiological going on that leads people to drink huge quantites of water, something probably to do with some other aspect of ME/CFS that we just don't understand very well yet.

I found this about thirst.

"A) The most potent hormonal stimulus for thirst is angiotensin II (AngII), which is generated when the rate-limiting enzyme renin is secreted by the kidneys in response to hypovolemia or hypotension."
 
Messages
74
Hi, @crussher

First of all, I am sorry to hear about your horrendous hospital experience.

I have not been diagnosed with "primary polydipsia," but I do experience excessive thirst and urination, and intermittent low sodium levels in blood serum. I have not had any sort of work up for this.

On my own, I've been looking into Syndrome of Inappropriate Antidiuretic Hormone secretion.

You seem very knowledgeable, but I'll go ahead and share a link to a recent paper on SIADH just in case you are not familiar with it. It is not uncommon in inflammatory conditions that affect the brain.

https://www.ncbi.nlm.nih.gov/books/NBK507777/
Thanks Zebra for your kind words. Intereting that you tend towards low sodium as I did. Does your urine concentrate or does it remain dilute? During my long, no doubt generally hyponatramic period, it was always dilute. The water deprivation test in the hospital reset my body's ability to concentrate my urine. I felt a lot better at that moment.

Thanks for sharing the paper on SIADH. I never knew it could create a thirst signal as I always assumed the excess ADH would prevent that. But I just read that ADH itself creates thirst, so the excessive ADH the condition creates will create a misplaced thirst signal. On the other hand, I ralso ead just now that the condition tends to lead to decreased urination as all the excess ADH holds the water in the system, so I don't think it was ever part of my picture. But helpful to know about, thank you.
 

Tammy

Senior Member
Messages
2,197
Location
New Mexico
At the same time, I was treated like a mental case throughout (‘You are only in here because you were drinking so much water’, ‘You can’t go to the toilet as you’ll drink water behind our backs’). I even overheard the doctor and nursing staff laughing about their primary polydipsiac case in the hallway.
I'm so sorry.........................what in the hell is wrong with people.


I went through episodes of severe thirst over the previous six months, probably around a dozen in all, each of which felt potentially life-threatening. They were a nightmare. And, for my trouble, at the end of it all I have a psychological compulsion to drink excessive fluids on my medical record. Nothing I tried to communicate about thirst in ME/CFS or downregulated fluid retention hormones was taken seriously. My discharge letter said ‘Patient admitted with self-diagnosed ME’ (which is untrue, I had been diagnosed two years prior).

Ughhhhhhhhhh. Again sorry. This is wrong.............just plain wrong.

Sending hugs
 

CSMLSM

Senior Member
Messages
973
I'm so sorry.........................what in the hell is wrong with people.




Ughhhhhhhhhh. Again sorry. This is wrong.............just plain wrong.

Sending hugs
@crussher
I agree this is absolutely not acceptable. I have experienced both scenarios of being seen as mental and laughed at and things I say or are true being wrongly recorded to my detriment. Prejudice plain and simple, just remeber you live in reality and they do not. What you experience is real and they just believe it is not to make their own fake reality more tolerable. I feel sorry for them! Idiots!
 

GlassHouse

Senior Member
Messages
108
Dr. Alan Pocinki has been researching this in his dysautonomia patients. Our conversation was like this:

Me: “I thought my tethered cord was getting worse because I have to pee at least every half hour. I got a urine hat to measure it because I was worried about retention but I’m peeing at least 300 mL each time, so my bladder is actually full when I feel like I have to pee. It’s just full all the time and I pee at least 7 liters every day.”

Him: “The next obvious question is where is all that fluid coming from?”

Me: “It’s from what I drink. I tried to record that too and it seemed about equal. But I can’t drink LESS because even drinking this much I feel like I’m dying of thirst! My mouth is dry, my skin is dry, surgeons have said all my tissues are dry.”

Him: “You know, every single one of my patients tells me the same thing: ‘I drink all the time but I’m always thirsty.’ There seems to be something affecting dysautonomia patients kidneys causing salt wasting. For some reason your bodies don’t hold onto salt so you don’t hold onto fluids.”

Me: “I already drown all my food in salt. There’s no way I could stand more.”

Him: “You’re probably not getting as much salt as you think. I’ve been measuring electrolytes in my patients’ blood and am consistently finding you aren’t getting enough salt, despite everyone trying to salt load. You need to drink electrolytes.”

Me: “Oh I already do! I drink a ton of Vitalyte every day but I’m still super thirsty.”

Him: “But are you also drinking plain water or tea or anything else?”

Me: “Well, yeah.”

Him: “Unfortunately that’s the problem. The water is washing out the electrolytes. It wouldn’t be an issue for a healthy person, but for someone with dysautonomia the water counteracts the electrolyte drink.”

Me: “So what do I do?”

Him: “You need to only drink salty electrolyte drinks, no plain water, all day.”

Me: “That’s impossible! The salt will make me more thirsty!”

Him: “You would think, but it’s actually the opposite. Patients always think they’ll feel more thirsty but it’s the opposite.”

So I tried it. I bought some LMNT pouches. I thought they tasted like drinking the ocean, and it was hard not to grab some water after but within 3 hours I got used to it (I also switched to cutting the LMNT with Vitalyte. It’s more palatable). It was so weirdI peed a normal number of times and didn’t have the urgency that came with my bladder filling all the way up within literally 20 min of drinking a few sips of water.

I still drink a cup of tea or decaf coffee but I’ll try to only drink the salt drink. The salt drink has massively helped my thirst and urinary frequency/ urgency. It’s one of the few things that made a massive quality of life improvement for me. The only down side is that it’s hard to adhere to the no other drinks rule. I like herbal tea, decaf coffee, and very occasionally a soda. Also it tastes not great. I don’t like the way it tastes with my Cromolyn (for intestinal MCAS).

Maybe this could help you?
 

CSMLSM

Senior Member
Messages
973
Dr. Alan Pocinki has been researching this in his dysautonomia patients. Our conversation was like this:

Me: “I thought my tethered cord was getting worse because I have to pee at least every half hour. I got a urine hat to measure it because I was worried about retention but I’m peeing at least 300 mL each time, so my bladder is actually full when I feel like I have to pee. It’s just full all the time and I pee at least 7 liters every day.”

Him: “The next obvious question is where is all that fluid coming from?”

Me: “It’s from what I drink. I tried to record that too and it seemed about equal. But I can’t drink LESS because even drinking this much I feel like I’m dying of thirst! My mouth is dry, my skin is dry, surgeons have said all my tissues are dry.”

Him: “You know, every single one of my patients tells me the same thing: ‘I drink all the time but I’m always thirsty.’ There seems to be something affecting dysautonomia patients kidneys causing salt wasting. For some reason your bodies don’t hold onto salt so you don’t hold onto fluids.”

Me: “I already drown all my food in salt. There’s no way I could stand more.”

Him: “You’re probably not getting as much salt as you think. I’ve been measuring electrolytes in my patients’ blood and am consistently finding you aren’t getting enough salt, despite everyone trying to salt load. You need to drink electrolytes.”

Me: “Oh I already do! I drink a ton of Vitalyte every day but I’m still super thirsty.”

Him: “But are you also drinking plain water or tea or anything else?”

Me: “Well, yeah.”

Him: “Unfortunately that’s the problem. The water is washing out the electrolytes. It wouldn’t be an issue for a healthy person, but for someone with dysautonomia the water counteracts the electrolyte drink.”

Me: “So what do I do?”

Him: “You need to only drink salty electrolyte drinks, no plain water, all day.”

Me: “That’s impossible! The salt will make me more thirsty!”

Him: “You would think, but it’s actually the opposite. Patients always think they’ll feel more thirsty but it’s the opposite.”

So I tried it. I bought some LMNT pouches. I thought they tasted like drinking the ocean, and it was hard not to grab some water after but within 3 hours I got used to it (I also switched to cutting the LMNT with Vitalyte. It’s more palatable). It was so weirdI peed a normal number of times and didn’t have the urgency that came with my bladder filling all the way up within literally 20 min of drinking a few sips of water.

I still drink a cup of tea or decaf coffee but I’ll try to only drink the salt drink. The salt drink has massively helped my thirst and urinary frequency/ urgency. It’s one of the few things that made a massive quality of life improvement for me. The only down side is that it’s hard to adhere to the no other drinks rule. I like herbal tea, decaf coffee, and very occasionally a soda. Also it tastes not great. I don’t like the way it tastes with my Cromolyn (for intestinal MCAS).

Maybe this could help you?
Well done for finding something that helps.

I believe this thirst issue is caused by vasopressin V1a receptor desensitisation, its a theory.
 

Judee

Psalm 46:1-3
Messages
4,520
Location
Great Lakes
Him: “You know, every single one of my patients tells me the same thing: ‘I drink all the time but I’m always thirsty.’ There seems to be something affecting dysautonomia patients kidneys causing salt wasting. For some reason your bodies don’t hold onto salt so you don’t hold onto fluids.”

Still I wish they would figure out why our bodies won't hold onto salt. The idea of drinking salty water all day long....ugghh...sigh.

Okay, maybe another thing to change. Thank you for this though.
 
Last edited:
Messages
87
I have the same symptom with drinking/peeing - 14 times the other night, but there is no way I can add electrolytes as they immediately trigger a flare of stomach/bowel pain that lasts for days. Interestingly my latest MRI showed a large number of simple cysts on my kidneys which I am getting investigated further - probably not related.
 

Judee

Psalm 46:1-3
Messages
4,520
Location
Great Lakes
there is no way I can add electrolytes as they immediately trigger a flare of stomach/bowel pain that lasts for days.

If I don't take an electrolyte that has some sugar in it, my stomach hurts so badly when I take it.

The sugar is supposed to help the sodium absorb better and it really must because I only get the stomach pain if I leave the sugar out.

Anyway, just thought I'd mention it in case you were just taking a supplement or salt tablets or one of the sugar free electrolyte products.
 
Messages
74
Dr. Alan Pocinki has been researching this in his dysautonomia patients. Our conversation was like this:

Me: “I thought my tethered cord was getting worse because I have to pee at least every half hour. I got a urine hat to measure it because I was worried about retention but I’m peeing at least 300 mL each time, so my bladder is actually full when I feel like I have to pee. It’s just full all the time and I pee at least 7 liters every day.”

Him: “The next obvious question is where is all that fluid coming from?”

Me: “It’s from what I drink. I tried to record that too and it seemed about equal. But I can’t drink LESS because even drinking this much I feel like I’m dying of thirst! My mouth is dry, my skin is dry, surgeons have said all my tissues are dry.”

Him: “You know, every single one of my patients tells me the same thing: ‘I drink all the time but I’m always thirsty.’ There seems to be something affecting dysautonomia patients kidneys causing salt wasting. For some reason your bodies don’t hold onto salt so you don’t hold onto fluids.”

Me: “I already drown all my food in salt. There’s no way I could stand more.”

Him: “You’re probably not getting as much salt as you think. I’ve been measuring electrolytes in my patients’ blood and am consistently finding you aren’t getting enough salt, despite everyone trying to salt load. You need to drink electrolytes.”

Me: “Oh I already do! I drink a ton of Vitalyte every day but I’m still super thirsty.”

Him: “But are you also drinking plain water or tea or anything else?”

Me: “Well, yeah.”

Him: “Unfortunately that’s the problem. The water is washing out the electrolytes. It wouldn’t be an issue for a healthy person, but for someone with dysautonomia the water counteracts the electrolyte drink.”

Me: “So what do I do?”

Him: “You need to only drink salty electrolyte drinks, no plain water, all day.”

Me: “That’s impossible! The salt will make me more thirsty!”

Him: “You would think, but it’s actually the opposite. Patients always think they’ll feel more thirsty but it’s the opposite.”

So I tried it. I bought some LMNT pouches. I thought they tasted like drinking the ocean, and it was hard not to grab some water after but within 3 hours I got used to it (I also switched to cutting the LMNT with Vitalyte. It’s more palatable). It was so weirdI peed a normal number of times and didn’t have the urgency that came with my bladder filling all the way up within literally 20 min of drinking a few sips of water.

I still drink a cup of tea or decaf coffee but I’ll try to only drink the salt drink. The salt drink has massively helped my thirst and urinary frequency/ urgency. It’s one of the few things that made a massive quality of life improvement for me. The only down side is that it’s hard to adhere to the no other drinks rule. I like herbal tea, decaf coffee, and very occasionally a soda. Also it tastes not great. I don’t like the way it tastes with my Cromolyn (for intestinal MCAS).

Maybe this could help you?

Thank you so much for sharing what has worked for you! I'm glad you have found relief. This is also what I have found to work best for me - drinking oral rehydration solution. Quenches the thirst and dramatically improves quality of life. How much do you drink? I'm interested to see you only drink this apart from some decaf coffee as I still drink a mix of plain water and ORS. I drink 1.2 litres of ORS every day and no more than 3 litres per day now - an improvement on the days of 12 litres plus!