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Monday, March 19, 2012

Doctor Visit Update

Feeling very sleepy, but everyone wants to know what happened with me at the doctor. (And this is how I write when I don't revise or edit.) Anyway...

There have been no more brain melts today. My scalp now has the slightest tingle left, but it is almost gone. This is the very tail end of the storm. My doctor visit was lengthy, maybe an hour face-to-face, and we talked through everything from a number of different angles: every one of my medications, the history of my brain "shocks" and how they might have morphed into brain "melts," the possibility of this being my first migraine, my diabetes insipidus, my intermittent problems urinating, the variations of my eating and my sensitivity to salt and sugar at certain times ... we covered it all.

Since I am mostly feeling better and am probably on my way out of this particular episode, we decided against adding yet another medication. So I am not going back on the Trileptal, at least not for now. My neurologist may have another opinion on the matter, but for right now it is "wait and see" regarding what to do next. A lot of my issues wind up like this. Something weird happens, then it goes away and we wait to see if it happens again. If it DOES, then it becomes something for us to treat with medication. Right now it is feeling more and more like an extended—but isolated—event.

Looking back at all of last week, the storm metaphor is a good one. A week ago I had the worst problems with my diabetes insipidus: my nasal spray dosing was messed up and (at the worst of it) I experienced massive thirst while my body tanked past capacity with too much water. It was so bad. On top of this, I could not urinate even though I desperately wanted to. For a few hours, crying was the only way to rid my body of fluid. That was last Monday.

As that worked itself out over the following days, these brain melts showed up until they, too, faded yesterday and today. It was all a big storm. An uneducated guess tells me too much "stuff" [<-- technical terminology] was stuck in my body, in my blood, circulating and bloating me, the wrong salty food in my stomach, nothing getting properly eliminated, maybe not enough protein or potassium or nutrients or whatever. I was just too full of the wrong stuff and everything went haywire. I have to be so careful with what I do, straining, eating, drinking, timing doses of hormones ... and all craniopharyngioma patients know what I mean by this. When I get it wrong for too many days in a row my body just becomes a calamity. I can never forget my body is not like a regular person's anymore. I am artificially replacing my hormones now and my body does not react to situations and compensate for them. Ask my body to do too much without micromanaging my dosages properly and I WILL pay for it.

Anyway, it seems to be passing, finally. It was a week of hell, but this morning I rose from an extremely satisfying night of solid sleep, went into the bathroom and—before I was awake enough to realize the significance—I felt the strongest "breakthrough" I had felt in many weeks or months. My body let go of whatever it had been harboring and I could feel the change for the better starting right then.

Last week has been well-documented and, unless my neurologist insists on another MRI right now or a change in my medications, that will be that. I have written down everything I can remember about it (and about what I did and ate in the days leading up to it.) But if this happens again, that will be another story.

So that is a long way of saying nothing is going on, I don't really know what happened, and nothing is being done about it. But, somehow, I am satisfied with the result.

Thank you, everyone! <3

1 comment:

  1. Sounds like the right choice to me. I completely agree, it was a storm, you weathered it (thankfully) and now it has passed. Let me tell you, I searched and read and read and searched, but my gut just kept saying "electrical storm." Glad you are on the mend and hopefully will stay that way for awhile. Yet another lesson learned.