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Strange extreme urine issue at night; any MCAS people also have this?

MCASMike

Senior Member
Messages
126
I'm wondering whether this is consistent with MCAS, which is that on some nights I wake up a few hours after going to sleep and there's a lot of urine, whereas other nights I can go 12+ hours at night and wake up only feeling a slight need to urinate. I'm wonder if this is could be due to the chemicals released by mast cells (my diet is quite uniform and I have essentiallly controlled for dietary factors). I have been taking 20 to 30 mg of loratidine over the last week or so, and this odd pattern has continued. I'm in my mid 50s and don't have diabetes, heart disease/atherosclerosis, or other typical chronic issues (just things associated with MCAS, including osteoporosis, denegerative disc disease, orthostatic hypotension, rashes that come and go quickly, dry eye that tear easily, difficulty swallowing, heat intolerance, sleep disturbances, runny nose while eating and in the cold, chronic post nasal drip, weakness/fatigue, grogginess/"heavy" head, etc.). I am going to try and find a local MCAS specialist, but I haven't been out much due to covid concerns.
 

xebex

Senior Member
Messages
840
Diabetes insipidus causes you to pass a lot of urine, it’s not the same as diabetes. When I’m having body migraines it causes me to pee a lot too and I’d say most likely caused by glutamate, histamines or some kind of immune response. I haven’t had that symptom actually since reducing glutamate in my diet.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I don't know if I have mast cell issues or not. It's possible. But I get that "on -off" thing with peeing too. Some days, needing to pee seems to switch off to some extent, and other days I produce more urine. Even though I'm taking on the same amount of fluids generally.

That can happen at night too. Some nights I really have to pee AGAIN after only having just gone to bed, or maybe slept 20 minutes! And some nights I go right through to morning with no need to.
The only thing I can guess, possibly, is there seems to be a sluggishness or at times, sudden activation of the diuretic hormone going on.

And I started to notice this when my ME/CFS started over two and a half years ago. I didn't have it before.
 

msf

Senior Member
Messages
3,650
I don't think this is MCAS in most cases, just ME. I have this when I have a PEM episode. It is something to do with ADH and the body's response to stress - KDM pointed this out in one of this videos on youtube.
 

MCASMike

Senior Member
Messages
126
Right, I should have mentioned the urine is usually light colored, just a hint of the yellow one expects, and also I've never had a UTI or any kidney or bladder issue. If I don't have to urinate until morning the urine is usually at least a little darker in color.
 

msf

Senior Member
Messages
3,650
Same here. This is consistent with your body producing too little ADH, thus too much water is released as urine and therefore watering down the urine.
 

msf

Senior Member
Messages
3,650
My previous reading of some studies in this area seemed to suggest that ADH may be low because of the brain's response to a stressor (such as LPS). If this is case then taking something like Trazodone or LDN that suppresses your brain's reaction to such stressors may help you to not have to get up to go to the toilet and therefore to get more rest.
 

junkcrap50

Senior Member
Messages
1,341
I sort of have the same issues. I seem to pee a lot at night too and I didn't used to as much. Now I pee 2-4x each night, whereas "before" (can't remember when this started) I'd pee 0-1 times / night. I initially attributed it to drinking too much water at dinner, but perhaps you are on to something.

I drink a ton of water during the day yet I don't pee excessively during the day - normal amounts. But at night, I pee just as much even after emptying my bladder before bed.

I know lying horizontal can increase water flow through the kidneys due since the hydrostatic pressure in your tissues is absent. But that should all be gone with 1 urination right? Hmm.. unless you have a TON of edema or fluid build up during the day and need to pee multiple times at night to get rid of it.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Diabetes insipidus causes you to pass a lot of urine, it’s not the same as diabetes.
I don't think this is MCAS in most cases, just ME. I have this when I have a PEM episode. It is something to do with ADH and the body's response to stress -

Yeah, this is the old "ME patients drink like a fish and piss like a racehorse". It's generally held to be due to dysfunction of the hypothalamus, which is responsible for releasing vasopressin. (vasopressin is also known as anti-diuretic hormone or ADH)

So, because of the hypothalamic dysfunction, insufficient vasopressin is released, and the kidneys then have trouble retaining water. As mentioned, this condition is sometimes called "diabetes insipidus" which has absolutely no relation to "regular" diabetes.

Hope this helps.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Just wanted to add my experience - was diagnosed with MCAS in Dec 2020 after years of CFS and extremely frequent urination has been a thing for me too. At its worst I was getting up maybe once every 2 hours during the night to pee, it was very disruptive for sleep and made it very difficult to get to sleep in the first place.

Since starting to get some treatment (Vitamin D plus antihistamines) this seems to have chilled out a bit, but I'm still getting up once or twice during the night without fail to pee (very much not a thing I ever used to have pre getting CFS)
 

MCASMike

Senior Member
Messages
126
Interestingly, taking nicotinic acid for more than a week now and the urine at night situation has now become consistent and every night I do build up quite a bit of urine, though I can usually wait until I wake up (I drink a cup of water before going to sleep so I don't think this is out of the normal range now).