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.

Medical Update

Okay, enough people have been bugging me for an update. There have been some interesting developments, but in all honesty I have been cutting myself off from everything until I finish my latest composition (a clarinet concerto) due in less than a month. Blogging eats up time, you know!

Anyway, and most importantly, the Eastern Phoebe—the irritating songbird who singlehandedly (singleclawedly?) derailed any hope I had for composing music last summer—has not returned. In the endless turf wars of the avian community it looks as though Chipping Sparrows, Woodpeckers and Scarlet Tanagers have forced my dear Eastern Phoebe out of the high rent district. Don’t let the branch hit you on the way out. If you come back, please learn more than three notes.

In a few sentences, this is my current situation. Next round of tests is in July with the neuro-ophthalmologist. With regards to the tumor re-growing along the optic chiasm, these tests are the most telling. Two months ago my numbers were good with the endocrinologist who is overseeing my hormone replacement therapies. One level was slightly low and it is being re-checked next week. The tiny speck on my MRI may or may not have grown, depending on how you interpret the cross-sections of the latest imaging. It looks about the same to me, for what it’s worth.

Probably as a side effect of the hormone replacement therapy, I find myself more susceptible to allergies, asthma and infection. Over the past few months I have fluctuated several times between healthy and bedridden. Dust, pollen and Noah’s slobbery kisses can be downright lethal for my asthma. If I get the wrong stuff in my lungs I can be out of commission, hacking endlessly, for days. After my bout with pneumonia this past winter I have learned to keep my hands clean at all times and to recuse myself from dusty yard work or dog brushing. I just can’t do those things anymore. The thought of extreme exposure without my rescue inhaler scares me.

During the last weeks of the symphony season I had a recurrence of the “brain shock” phenomenon. But now they are gone again. The painful electric shocking sensation I get when transitioning from active to passive mindsets is deeply unsettling when it is happening frequently. I still don’t know why they happen. Or why they go away. I am not taking any medication for them (for a while I was on Trileptal). This is one of those cases where, if I had been given a new prescription this time, I might have thought the shocks went away because of the medication. But I decided to “ride them out” this time and—lo and behold—they went away on their own.

I don’t know what else to do if the shocks come back again. (I assume they will.) They are so terrible, yet they are over in less than a second. Once the shock has passed, there is no telling if the next one is going to be in five minutes, five weeks, or five months. I don’t know what any doctor could do about this. Certainly, I don’t want to add another medication just in case I have an unpleasant nanosecond in the next few months. At a certain point, you have to weigh the pros and cons of trying to fight something. Trying to make plans for the next brain shock is like knowing you are going to die someday. You know the date is out there, but what can you do about it? Go on with life as normal. Live happily. It’s never perfect, but so what? The ability to live any life happily comes from inside you and it’s not related to things you can’t control.

Mister Atomic

The past week has been good. My mysterious left leg phenomenon vanished almost as soon as I posted the previous blog. I noticed it in the car once or twice more, but other than that it’s been fine. I walked like Igor for a while. Not the Stravinsky one but the Frankenstein one.

The pitch change relating to light coming in my left eye I have confirmed over and over. At a certain time of day when the ringing is incessant I can manipulate the pitch by controlling light. I have a timely appointment Monday morning with my neuro-ophthalmologist and I will have plenty of questions.

The electric detonations in my head continue, though they are less intense due to the new medication. This week our orchestra is playing the "Doctor Atomic Symphony" by American composer John Adams. During performances I can't help but imagine miniature Los Alamos experiments inside my head every time one of my jolts occur.

The new prescription (Trileptal) instructs me to take the pills “twice a day” and I have worked out a way to take one pill before my brain shocks begin and another pill right after. This means taking the two pills as close as thirty minutes apart, but it is still technically “twice a day.” In any event, it does something to help during the worst part of my day. The shocks are better. But only a little.

Yesterday I ran into a friend and updated her on my condition.

“Wait,” she said. “In addition to the tumor you’re developing Epilepsy?”

I replied, “Maybe yes, maybe no. At least the medication is for that. A disproportionate percentage of craniopharyngioma patients develop Epilepsy.”

“I have Epilepsy,” she said.

“What?” (Why am I not notified of these things? I have known this person for years.) “You?” I asked.

“Yes. Since I was nineteen. Doctors didn’t know what it was.”

“Aren’t there, like, sixty different kinds? What kind do you have? I have light flashes in my left eye. I call them my electric butterflies. Do you have light flickers?”

“No,” she replied. “Mine are like auras rising up from inside me that occasionally lead to seizures.” She gave me the technical name. “Until I was diagnosed I didn’t know where to turn. I even tried exorcism.”

“Can you spin your head around? You could make a living just collecting bar bets.”

She was not amused, so I continued, “Anyway, it’s still early and there are so many different kinds. That’s if I have it at all.”

I thought of another little thing I have noticed recently and added, “I also have these slight arm or finger twitches.” I mimed a jerky motion with my left arm.

She nodded knowingly and donned a Welcome-To-The-Club look on her face. “Aha. So you're a lefty."

Shockras

In a week I will have my next appointment in the neuroscience wing. In the meantime (this is a vacation week with the orchestra) we are keeping the stress level down by catching up on episodes of the TV show “24”. We just saw one where Jack Bauer (the protagonist) hung from the ceiling with bound wrists while the Russian mafia attached live jumper cables to his wounds.

“There,” I said to MJ. “That’s what it feels like, only on my brain.”

Noah noticed my voice and tipped his head to see if I had a treat. I didn’t, so he slumped back, groaned and watched the screen as Jack Bauer took more juice.

I was exaggerating, but only a bit. The new medication (Trileptal) doesn’t help (at least at the current dosage), but I am supposed to continue it until the next appointment. I don't know yet whether this is some form of epilepsy, but I have recently read that over 5% of craniopharyngioma patients (in one study) are later diagnosed with epilepsy. This is much higher than the national average.


I still experience the brain shocks—I now call them "shockras"—but I try to avoid situations where they occur. This means I never rest during the day, not even for a moment. And by “rest” I mean the moment I relax my thoughts, stopping to consider something beautiful, stopping to “smell the roses” if you will, stopping to think how something reminds me of the time when … KZZAAAAAPPP!

Like that.

As a result, I am sleep-deprived, probably more susceptible to interrogation than if I were drugged with Sodium Pentothal. I would reveal everything. Bank account numbers. Phone numbers. Safe combinations. The location of the rebel base. I’ll talk, but just STOP THE SHOCKS!

Again, I exaggerate, but only a bit. I do not suffer 24 hours a day. I suffer for one second, anywhere from three to fifteen times a day. And then I’m not suffering.

Imagine someone holding a sharp object over your hand. There is no pain yet, but you know at some point during the day that person will stab you with the sharp object quickly. Then—just as quickly—the pain will disappear.

So what do you do in this predicament? Yes, you see the right doctors and try different medications. But, besides that, what do you do? You go about your day.

Wake up. Nothing.
MJ makes breakfast. Mmm, good coffee. Good eggs. Good toast. Nothing.
Go for a walk outside. Cool spring air. Beautiful. Nothing.
Compose a little, write a little, check your email. Nothing.
Lunch? Sounds good. Good soup, mmm. Nothing.
Phone call. Nothing.
Errand. Nothing.
Dog walk. Nothing.
Fold laundry. Nothing.
Book. AAARRRRRRRGH.
Recover.
Book. Nothing.

Like that.

I can’t wait to see what the EEG will show. If it records one of these shocks it might break the machine.