Two More

At least it’s always different with me. As a patient, I don’t feel stuck in a rut. I am, more accurately, an evolving set of problems. Like the last few buttery peas on your dinner plate, you want to spear them with your fork and be done with meal. But they slip to the side, scattering into different patterns. Every time you think you have things calculated correctly, something else happens. Life as a patient, every day a little different.

In the last day I have had two more of my “brain melts,” but they were, alas, different than before. Previously (this was over a week ago) they were episodes lasting about ten seconds where the left side of my brain would go numb and I could not hear out of my left ear. They came and went over the course of a few days, and they were basically gone by the time I saw my doctor on a Monday morning. No medications were added, and the explanation of migraines still makes the most sense to me.

But yesterday afternoon I had a single “brain melt” that lasted ten minutes. I can’t be sure of the length because I didn’t time it, but around noon my left ear began ringing loudly, then it went totally deaf, as if I were just smacked hard on that side. I felt dizzy, disoriented. MJ was out on a walk, and—for whatever reason—I turned to Noah and said, “Ruh-roh,” even though humor was far from anything on my mind.

I thought the event would be over a few seconds later (as before) but it kept going. I went onto the couch and put my feet up, waiting for it to pass. When it didn’t pass in the first minute, I seized the opportunity and ran through a mid-brain-melt checklist so I wouldn’t have to think backwards after it was over.

For at least five minutes and probably more, I asked myself, “Okay, wait. Is this really happening? Is half my brain and head numb? Yes, this is really happening. Can I hear out my left ear? No.” I snapped my fingers next to my left ear, then my right. No hearing on my left side. I wiggled my fingers, touching each one in both hands to my thumbs. I closed my eyes, stretched my arms out (while still lying down) and then touched my nose with my eyes closed. I missed and hit my eye, but I always miss. I opened my eyes and stared out the window into the bright sky. One eye closed, then the other. Both fine. I smiled, moved my tongue back and forth. Fine. I couldn’t think of much else to do (and I didn’t want to stand up) so I made up tongue-twisters, like “Rikki-Tikki ate a starchy quince schmaltz tart.” Everything was fine, yet the episode was definitely occurring. About ten minutes after it started, I felt my hearing come back and it was over. I stayed horizontal for another ten minutes, and by then MJ came back from her walk. I sat up carefully and felt fine after that.

The next few hours, my tingly scalp returned. It wasn’t as bad as before, however this morning (about eighteen hours later) it is closer to how it was two weeks ago: very sensitive and painful to the touch. Last night, at some point, I had another one of these brain melts. I was awake, staring at the stars out the window, thinking about words and music, music and words, and I heard the ring in my left ear, then the deafness once again, then the numbness. I was too tired to do much about it, so I just let it pass. If I had to guess, it was about the same length. Ten minutes or so.

Is there anything to do about this? I can’t think of a single thing. I live with a very rare condition (where most are a lot worse off than me) and all I can do is try to minimize stress, take notes, and get on with the non-patient side of my life. What else is there to do?

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

Storm Almost Over

After my last blog post went up, I had no idea of the outpouring of responses I would get. I have read and re-read my blog several times, and all I can say is it was very accurate, written "in the moment," trying to articulate exactly what was going on. I didn't stop to wonder what anyone else would think about it; my only goal was to document.

To update everyone since then, yesterday was a little better. I had anywhere from one to three small "brain melts" (which I now think is a perfect term for this) but the top of my head remained very sensitive and painful. This morning (after about eleven hours of sleep) I have had none of the brain melts, and the top of my head still has some tingle, but I wouldn't call it painful anymore. It sparkles like a foot waking up after you have slept on it wrong. A big storm has passed through my head and my intuition tells me this is close to the end of it.

I am seeing my primary care doctor this morning, and I may read him key portions of my blog entry because it details everything better than I could say otherwise. Based on how things go, I'm sure my neurologist and everyone else will get letters, and probably it will be time for a new MRI. My last one was six months ago. It was unchanged, and the plan then was to have the next one in a year unless anything strange happened. This passing storm may or may not mean I'm having a new MRI.

Some things to consider: my vision is fine. When my brain melts occur, I do not experience a dimness in my vision, and I don't see flashes of light. Also, I have spoken at length with a doctor friend, casually, and much of what I have gone through—especially the painful scalp—is consistent with the onset of migraines. Any of the signs of stroke or tumor regrowth along my optic nerves are just not there. My tongue moves fine and I can speak with clarity. I can see colors very well in both eyes. The brain melting for ten seconds is exceedingly weird, but besides this there are no red flags.

I have never had migraines before. I know a lot of craniopharyngioma patients develop them (and just about every other condition, har har) so an educated guess is that I will now be going down the path of managing migraines and figuring out what triggers them in my life.
When my more painful "brain shocks" were a problem (they started in 2010) I was put on Trileptal, an Epilepsy medication used to treat seizures. The brain shocks went away (mostly) and I stopped the Trileptal. Maybe now I will be going back on something like that, a medication that will dull the spiky nerve endings misfiring all over my messed-up brain. It makes sense.

I will write a short update after I see my doctor later this morning. Thank you to everyone who is following me down this bumpy road. You mean the world to me, seriously.

Current Symptoms

I'm not doing very well. This is going to be a short update because it gives me a headache if I concentrate. Part of the purpose of this blog is to write down substantial changes in my symptoms for future reference, so here it is.

Thursday night, at a concert, I felt a sizable event inside my head. It's hard to describe, but it was like one of my "brain shocks" from before, but without any pain. Rather, half my head went completely numb, melting away, as if the left side of my brain vanished for a few seconds. My left ear could not hear anything and I felt the left side of my head just melt. It was so unnerving I froze, waiting for it to pass. It went away after ten seconds or so. It wasn't my imagination; my colleague next to me asked if everything was okay (even though I thought I had been disguising any problem.)

Friday (yesterday) started out okay, but by the time the afternoon rolled around my head pounded. The deaf-ear-left-brain-melting sensation occurred at least ten or fifteen more times. I don't know what caused them. I did nothing but rest all afternoon and evening. By the time I went to bed, another old symptom showed up: my scalp turned very sensitive to the touch. It tingled like a box of Pop Rocks sprinkled under the skin. I wanted to touch or scratch the top of my head, but it hurt to do so. It was like touching an open wound. The last time my scalp felt this way was the fall of 2009, right before they discovered my tumor. I'm not trying to sound the alarms here; I'm just trying to write down what I feel right now with as much accuracy as I can.

I fell fast asleep yesterday evening and slept straight through the night, which is uncommon for me. This morning—Saturday—my scalp is again extremely sensitive. I have a wool cap on because my head gets cold, but the occasional scratch of the wool against the crown of my head hurts. When getting Noah's morning pills, I had the worst "brain melt" yet (that's probably the term I will use). I had to steady myself for a few seconds because I thought I was about to pass out. No pain, just ... OhhhhhNooooooooooooooStoppppppPleasssssse ... and then it passed.

No, I am not going to drive a car today.

As I sit here and collect my thoughts, it just feels like a ton of pressure in my head. Too much pressure, and it hurts to stare at this screen anymore. Sorry for the typos or whatever. I'm going to put on an ice pack to see if it helps. I'm seeing my primary care doctor on Monday. My last MRI was six months ago. Peace out, friends and loved ones. I try to put on a good face when I can, but parts of this journey scare me.

Half Moon

Most nights I wake and rarely return to sleep. When I do, I rise staring first at the clock, so pleased to have made it past seven or half past, scratching my head first and then perking to the crack of coffee beans downstairs while I run my hand over the still-warm impression on the other side of the bed. This is the exception. Half the time I am up sometime around two, the incongruities of "breakthrough" another reminder what my kidneys would be without sour droplets of medicine sniffed to counteract the side condition I so tire of battling, Diabetes Insipidus.

[Editor's note: Yes, the patient Alexander Miller has been reading Flaubert. Please bear with us.]

This night, now half past three, I let Noah outside when he stirs, as confused as I regarding my lack of sleep despite my tiredness. As I wait for him to roam about the yard, tentatively stepping about the dewy blades of green, I cast my gaze upward to the half moon, noting the dim outline of the darkened semicircle while squinting at its brighter counterpart. My life, I mused. One day as such, then the next as the other. A dove with a shattered wing one sunrise, the first robin of spring the next. Weak, then hale.

The past two days underscored this juxtaposition. Monday I succumbed to tears, weeping openly by the kitchen sink. The water ran into the pots and flowed over the sides as Madame MJ came to me and held me in her arms. I thirsted not for water but for iced water, for ice, and then something bitter and cold, lemons, ice cold citrus fruit, anything to sate the sand on my tongue and the cake around my lips. Yet I could not drink for my body could not take one more drop in it! My insides slapped this way and that with enough fluid to hear it so. Yet the thirst never ceased.

The next morning—Tuesday—I was doctor to the previous day's patient. I rose a new man, eagerly pursuing chores, rid of imbalances that had previously set my mast atilt. I drank when thirsty, attended to private matters without incident, drank water again, attended to private matters again, and on the day went until Madame MJ commented I was in fine fettle, as sturdy as a Picardy farmhand!

One more sleepless morning, now Wednesday, my eyes ascend to the half moon again, looking to one side and then the other—dark, light, dark, light—my eyes resting back on the dark without fail. Another morning at the tipping point, my flesh a touch plump with fluid not yet spent yet my lips already salty, craving the glass of water I must consider carefully before swallowing. I ask myself every morning, "Which half of the moon today?"

Words and Music

It is strange how my passion for writing slips so easily between words and notes. I don't plan it, but when I feel like I am getting somewhere with either I walk away from one and pursue the other.

For the past month, I have spent most of my spare time composing. I have started in earnest on a new work but I can't talk about it yet. The concept of this large project has lit a fire under me, though. I have no time to write words.

It is the same when it is the other way around, too. Words excite me so much I wonder if I will ever compose another note.

I wonder if it is because my brain can't handle it. I don't mean how this relates to my tumor, but rather how I have felt my entire life. The card catalog of a memory I have, earmarking every day in a way I can zoom back and access just about any point in my life. When I compose or write, the notes or phrases get etched inside me so deeply I lose perspective. I feel physical pain—headaches—when it gets to be too much with the endless patterns of notes in my head never stopping.

I believe I use written words to stop the music's repetition, and I savor the refreshing quality of prose when I come back to it. Likewise (and to a lesser extent) I go back to composing music when sentences I have written reach the stage where they repeat and repeat thousands of times in my head.

Honestly, this is what it feels like. I delve deeply into something until I am almost crazy, then I take an escape hatch to a parallel world. It is the only way I can cope.