Drip, Drip, Drip...

I’ve written a little bit about having diabetes insipidus; I don’t think I’ve touched on any of the details, other than it was a symptom of the pituitary tumor and it basically meant I peed a lot. An awful lot. The last week or so people googling for information on symptoms of thirst and frequent urination have emailed me, wanting to know what it was like. What it is like. How they can differentiate between those symptoms and just a bad stretch of dehydration or peeing a lot.

The truth is, I have it and I don’t know a whole lot about it, other than how it affects me. The frequent urination came first – I think. I’m sure the rate increased and I didn’t pay particular attention until I was getting up five or six times a night and searching for the nearest restroom every hour. Then came the thirst. We’re not talking “I’ve been working out and I need extra water” thirst. We’re talking extreme thirst.

Violent thirst.

Painful, painful thirst.

I’m not sure I can do justice to a description of what this type of thirst feels like. I can tell you that I would drink until my stomach could hold no more, and I’d be miserable until enough left my stomach that I could drink more. I can tell you that we’d be out driving and I’d have to stop at the first soda machine we could find and I’d buy 3 cans of cold tea and down them all in about 4 minutes, and want for more. I can tell you that we’d be in a fast food place and the Spouse Thingy would get in line while I sat down and fidgeted endlessly, like a junkie waiting for a fix, until he could pay for a drink cup – then I’d be able to get unlimited refills. I never got ice; ice took up precious beverage space.

Imagine the worst sunburn you’ve ever gotten. Your skin flaming red, searingly hot, blistering, peeling in drying, blackened layers. With untreated diabetes insipidus your mouth and throat feel like that, and no matter how much you drink, how often you try to sooth the pain, it doesn’t go away.

So you drink. And drink. And drink.
Then you have to get rid of what you had to drink. In copious amounts. Every 15 –30 minutes.

The average adult urinates 6 times a day and drinks 2 liters of fluid. If you’re going 20 times or more and drinking a couple of gallons a day, there’s an obvious problem that needs to be addressed. The first thought is probably diabetes mellitus (“sugar” diabetes) but if your blood sugar levels come back normal, investigating diabetes insipidus (“water” diabetes) might be worthwhile.

I wish I knew more and could be more helpful; mostly what I know is that I have it, I can manage it with a daily dose of DDAVP (Desmopressin), and I know what it feels like when the medication wears off. I know I have to monitor my weight for sudden fluctuations and pay attention to how much fluid I take in. I know what will happen if I stop taking the DDAVP and don’t keep hydrated (blood sodium levels will skyrocket, and if that doesn’t kill me, thickening blood might). I wear a medical alert bracelet in case I’m unconscious and can’t tell an ER doc I have it – something that would be important were the DDAVP to wear off while under emergency care.

A good place to start looking for information is The Diabetes Insipidus Foundation.

And if you have symptoms of extreme thirst and frequent urination, don’t take a “wait and see” stance. Get it checked out. Now.


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