The Water Drinkers: Intermittent Diabetes Insipidus - A Missing Piece in ME/CFS?

Once again I excused myself to Shane and took another trip to the restroom. This was getting a little embarrassing but it wasn't all that unusual. The pee every 15 or 20 minutes process had started earlier at the OFFER Conference. Believe it or not that darn carpeting had triggered this; the chemicals were bothering me - something I just seem to naturally respond to by drinking alot of water. I had been up and down to the restroom all Conference.

But I had been out of the Conference room for hours and here I was still going...every 10 to 15 minutes....fairly long streams of utterly clear and dilute urine, and, of course, as every time I did pee I felt the need to replenish - just a few swallows of water - but that was enough for yet another trip.....

Two things do this to me; some types of chemicals and getting cold. Getting cold is actually worse. When I'm camping and I can't stay warm I will literally douse the ground around the campsite at night. When I warm up it stops - completely. I've never had a clue why. (I also tend to get fluey when I get cold - hence the sweater I carry with me almost everywhere). This has been going on as long as I remember after I got ME/CFS.

Diabetes Insipidus? - Shane looked at me and said "I think you have diabetes insipidus" to which I retorted, mixing it up with diabetes mellitus "I do not!" Then he told me HIS story...

CBS's Story
- CBS had had periods when his body appeared to need large amounts of water as well but while my periods had remained fairly stable his had definitely not. In fact his ailment almost killed him before he got it under control.

Years earlier he started out with a few sports drinks when he felt drained. That worked for awhile but over time what had begun as a mild annoyance ultimately turned into an all encompassing quest to keep the fluids in his system. Ultimately he was taking in over a case of sports drinks a day trying to keep the fluids in his system and was having all sorts of problems. He was flushing the toilet so frequently that his water bill doubled!

Not only was he getting weaker and weaker but he had cracked painful skin on his hands and feet, his lack of tear production left corneal ulcers in his eyes and he was cold all the time cue to his body not having enough fluid to maintain his body temperature.

Psychogenic Polydipsia or DI? Trips to the hospital, however, were fruitless. It turns out there are two types of 'water-drinkers'; there's the diabetes insipidus type and - whoops! - psychogenic water drinkers (primary polydipsia); people who seem to develop almost an addiction to drinking water in response to a dry mouth sensation. Although some cases appear to occur in people without mood disorders it is traditionally associated with them.

Psychogenic Polydipsia can be a serious problem; like anything in nature too much of anything is no joke. In fact, long- distance runners have to make sure they don't take too much water lest they get 'water on the brain' - which, despite its kind of oddly humorous connotations - can kill them.

Of course with CBS's background - ME/CFS - diagnosing the source of his 'water addiction' was easy; he had psychogenic polydipsia. The problem was that he didn't have that; actually he had a pituitary problem that was causing his body to try to flush every bit of water he put into it out of it.....and at this point it was pretty rapidly killing him.

The Test - Testing for primary polydipsia requires having a patient stop drinking and then measuring his/her urinary output and weighing him/her. Unfortunately the cure for primary polydipsia - stopping drinking - is precisely the wrong thing to do for people with diabetes insipidus since they are already, despite all their drinking, very dehydrated. (MERCK advises that 'serious dehydration' can occur during this test).

A night at the hospital in which they stopped CBS's water intake and measured his water output indeed left him much the worse for wear. To his dismay, though, his doctor happily showed him the numbers proving it was all psychogenic. CBS's pointing out that they had actually miscounted (had missed a measurement) did no good and upon being sent back home he literally crawled on his hands and knees from his car to his house.

Not long afterwards he was back desperately trying to convince them he had a real problem. Finally he got through; they gave him the fix - one pill of desmopressin - and it all stopped. He went home and celebrated and the next day - as the pill wore off - was back, at the appointed time, actually, and they were happy to inform him he did indeed have diabetes insipidus. (Later tests suggested that a malfunctioning pituitary was part of the problem).

That night CBS gave me a small amount of ADH and it worked, my body quickly relaxed and warmed up.

Causes - Primary diabetes insipidus is caused either by problems in the HPA axis (hypothalamus or pituitary gland) which limits the production of anti-diuretic hormone (ADH) or in the inability of the kidney to respond to ADH.

High water intake can be caused by at least 15 other conditions including hypothyroidism and drugs which cause dry mouth.

Intermittent DI? - My case is complicated. For me it's possible I do, as CBS did, have intermittent DI - brought on in my case - when I get cold or are exposed to certain chemicals and then drink alot of water.

But I am nothing if not complicated and after some recollection I remembered another different instance in which I engaged in polydipsia like water drinking.

Polydipsia? - This type of water drinking spate has only happened a few times but it's left indelible memories. Frequent urination when I'm cold is an annoyance...its kind of amazing occurrence given how much I urinate but it's really just annoyance..This was something else indeed.

It's occurred three or four times over the past 15 years during the early summer as the temperatures heat up. A few times, something flipped and all of a sudden I craved water. This is not a pleasant sensation at all - in fact, its extremely troubling since every drink of water seems to make me thirstier - and I have to, in the midst of this great thirst - force myself to stop drinking. (My mouth got so dry at first I thought I had Sjogren's Syndrome - which cuts off salivary gland production.... and killed my mother). It's so alarming that I quickly bring it under control.

Intermittent DI when I'm cold plus very infrequent polydipsia when I overheat? Hey, nothing is easy in CFS.

Intermittent or undiagnosed DI would somewhat fit, though, with the HPA axis (hypothalamus-pituitary-adrenal) axis abnormalities or even with infections. CBS's DI was later traced to


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