Water.

You don't really think about water until you can't get enough of it. Then it becomes kind of an obsession. You get anxious even if stuck in traffic without a drink.

Extreme thirst is a symptom I have had on-and-off for a couple of years. Because I was home most days and I refilled my glass directly from the fridge, I was unaware of my fluid intake. I knew I drank a lot of water, but that is good for you, right? You are supposed to drink eight glasses a day. So I didn't really think much of it until one day in summer 07, a friend stopped by for a visit. I had a pitcher of water on the table and I was drinking water and refilling my glass. I kept asking my friend if she wanted water or something else to drink. She kept saying she was fine. I was getting quite stressed looking at her. She wasn't drinking at all, while I was refilling my glass constantly. I thought she had to be thirsty. I was seriously thirsty. I drank most of the pitcher -more than a quart- in about 90 minutes. And I was still thirsty!

The next morning, I realized the problem probably wasn't her drinking too little. It was probably me needing to drink too much. So I decided to measure my fluid intake: I filled the pitcher with water in the morning and only drank from that pitcher, refilling it when it was empty. I drank almost three full pitchers; 2.8 gallons of water. That's 44 glasses of water in one day!

I looked it up on the Internet. That's abnormal. You run the risk of water intoxication from low electrolytes.

I called the endo's office and they made a space for me in a few days (usually it takes weeks to get in there). We already knew it was not diabetes mellitus (my blood sugar is way too low), so they tested me for diabetes insipidus. Negative. My electrolytes were fine, so no action required. They sent me away, mystified, with the suggestion that I raise my salt intake.

That fall ('07), I had those hideous tilt table tests, which caused seizures both times. However, they said it was not vasovagal syncope. Despite this, was told to raise my salt intake (again). They actually told me to drink more water too, until I laughed and told them how much water I was drinking. That was the only useful thing that I got out of that Rock Star of Electrophysiology. He explained that my body was trying to raise my blood volume. For this it needed both salt and water. I was giving it the water, but not the salt. Without the salt, the water was coming straight back out again. So my body kept asking for more blood by making me thirsty. Why it didn't just ask for salt was beyond me! But my body has never been known for it's logic. Since then, I increased my salt intake dramatically and that has helped. I had to raise it a LOT though. On those thirsty days, I just pour a pile of salt into my hand and wash it straight down. I probably eat at least a couple of teaspoons of straight salt on those days. Even now, I am sitting here with a rice cake smothered with salt as my snack. Disgusting to most people, I know, but oddly it does assuage the thirst (I know for most people the opposite is true. Like I said: Logic is not my body's strong point).

There is a reason I am telling you all this.

Yesterday I had my endo visit to review the results of the freaky tests that were completed on Christmas Eve. Most things were normal. However he noticed that my aldosterone, which is the hormone that regulates sodium in the body, was very low. So too was my renin level. Renin regulates blood pressure. According to the doc (and he should know), they should counterbalance each other: When one is low, the other should be high. They shouldn't both be low (or both high).   So my sodium and blood pressure regulation system has a logic error. That explains quite a bit.

The doc decided on a medication named Florinef. There was quite a bit of irony here: Over a year ago, the cardiologist suggested this, when the sodium problem first became apparent (but unexplained). However, with my history of bad medication reactions, I am very leery of the "throw it at the wall and see if it sticks" method of diagnosis through medicating. I refused the drug and stuck with unfeasible quantities of salt.

After the endo suggested Florinef, I asked a bunch of questions:

"I know this will help the thirst and the salt thing, but will this help my seizures? 
"I doubt it, but who knows?"
"Will I have more energy?"
"Maybe... -usually when any hormone is low, you feel wiped out. If we get your aldo back to normal, you will probably feel better"
"What about the feeling of cold I have all the time? Will it help that?"
"I don't know. We'll have to see what happens"

I started the Florinef yesterday. I didn't have a seizure today. However, after lunch (usually seizure time for me), I was felled with a hideous headache, nausea and that old feeling of freezing from the inside out. Those lasted way longer than a seizure would have. Nice. Eventually, after two extra-strength Tylenol and later two Excedrin Migraine, the headache abated.

So I am not about to declare this a runaway success -or a success at all. But it is only day one.

Oh and there was another abnormal test result, for which I am trying to chase down some answers. I will talk about that another time.

Comments

[yanub]

That's interesting. My daughter is another "heavy drinker." She can easily plow through a pitcher or more of iced tea all by herself. Staff at restaurants we frequent will just put a pitcher on the table rather than try to keep up with her empty glass. I'll have to point this entry out to her. Maybe she has a similar hormonal disruption.

[One Sick Mother]

Yanub,

That *is* interesting. I don't think aldosterone is commonly tested. It was only tested in me because a recent CT scan showed a mass on one of my adrenal glands.

It might be worth looking into.

[Carleen Ibrahim]

Ok, this is downright interesting! I, too, am constantly thirsty and drink all the time. I've been tested multiple times for diabetes with negative results every time. At my last visit with the dentist, he commented that I have a chronic dry mouth that is causing tooth decay at the gum line. I see the neurologist on the 20th and will definitely ask her about testing aldosterone.

[Queen Slug]

It's interesting. I hope this produces some good results that are sustainable.

[One Sick Mother]

Carleen,

You may need an endocrinologist to do the testing and to read the results. Aldo. is apparently one of those that is different at different times of the day and also in relation to your body poition. That is why the endo wanted me go in the morning and to stand for 30 minutes before the blood draw; -to raise the aldo as high as it would go. It got to 2 (of a possible 28).

QS,

Thanks.

I hope you don't mind me tagging you ;)

-OSM

[Jilly]

I have POTS and mine went to 64 when I stood for an hour during some tests at Vandy. Beforehand it was 5. Hope the Florinef ends up working out for you.