The secret storm in my brain

…that even I didn’t notice.

This is not your usual how-I-surmounted-mental-illness story, though I admit I enjoy a good how-I-surmounted-mental-illness story from time to time. Rather, it’s a story about how everything I thought I know about my mental condition might have been wrong. See, I thought my brain had some idiosyncrasies of mood and some delicate, diva-esque requirements, but worked pretty well because of my wise and tender insight and self-care.

Turns out, instead of my brain working pretty well, with discipline and sensible chemical adjustment, my brain has been misbehaving wildly, behind my back, for who knows how long. It has been rubbing its shoes on the carpet and touching the door handle. It has been sticking its fingers in a light socket. It has been flying a kite in a thunderstorm.

I don’t know the ending yet, but frankly, I’m nonplussed. Let me explain.

Happily living life on the spectrum

Over the past few decades, the erstwhile stigma of revealing oneself to have a mental disorder has faded, until now such announcement is likely to be met with a shrug and a cool, “Well, we’re all on a spectrum of something.” So I guess it’s finally safe for me to say that, for most of my adult life, I’ve been noticeably “on the spectrum” of bipolar disorder (with the usual complement of GAD and OCD, of course).

So I don’t drink, I eat well, I try to be disciplined in my routine, and I’ve taken medication for these conditions over the years. And while I’ve been diligent about managing those meds, checking and changing them as needed, I also know that there is little research about their long-term effects. Most so-called “long-term” studies look at a duration of only 18 months, let alone 18 years or more.

“What fresh hell is this?”

So when I started to have other, new symptoms over the past few years, it was easy to write them off as artifacts of the medications. Here are some things I started noticing:

1. Sometimes my mouth would spasm, unannounced, quick as lightning, and I would viciously bite my tongue. It was so fast no one ever saw it.
2. Sometimes, in conversation, I would suddenly forget, not only the word I want, but how to even remember the word. I’d freeze mentally, though sometimes my face would twitch and I’d panic, just a little. No one would notice, and they’d usually just go on, glad their turn to talk came a little earlier than usual.
3. I started having headaches nearly every single afternoon— 9 days out of 10. Short, mean little headaches, and sometimes a second one at night. No one knew why, and neither imaging nor blood tests gave a clue.
4. Sometimes my hands would start moving uncontrollably, sort of pressing and massaging each other. It’s a movement I cannot replicate consciously.
5. And other times, I’d find myself just twitching or flailing briefly about — spazzing out, as we used to say in the pre-sensitivity days. Yes I’m that old. And I still can’t think of a better term.

Things that make you go, “Hmmmm….”

Nothing seemed life-threatening, but I dutifully reported these weird, new symptoms on my regular doctoring rounds. Most of my doctors had little to say about them.

“Doctor, sometimes my jaw just twitches, out of nowhere, and I bite my tongue. Also, I forget how to talk. And, you know, the headaches, still.”

“Hmmm.” Maybe they’d make a note, but that was the only usual comment.

And meanwhile, I’m blaming the medication, the anxiety, the lupus, the insomnia, whatever. And sometimes I blamed the craniotomy I had for an unruptured aneurysm in 2015, but nobody would say that was it. (Doctors hardly ever like to say a symptom is caused by something another doctor did.)

And that’s where it all was —just a random collection of mysterious artifacts — until I had a minor car accident last month. I reported my bruised sternum to my neurologist and told her how I had rear-ended the truck that was stopped at the sign ahead of me. I mentioned, offhandedly, that something seemed to have distracted me, but I didn’t know what.

The neurologist’s face sharpened and focused and she instantly said, “Let’s order an EEG.” She is no alarmist, but she has always been the most diligent and careful of all my health care team. I could see her mind turning. Mine started turning, too, even though I was 90% certain that the EEG would simply rule out one more thing.

Cut to the verdict: the EEG demonstrated a localization-related epilepsy, which means I have focal (limited) seizures, without loss of awareness. In all my years of consulting Doctor Google, that is one diagnosis I never imagined.

Who am I now?

It is not easy to live the up-and-down life of a person with bipolar disorder. However, I’ve always believed that those difficulties were offset by the occasional experiences I’ve had of clarity of vision, bursts of creativity or insight, floods of cognition or feeling. But what if those experiences have actually been seizures?

I’m suddenly having to look back at the whole history of my treatment for bipolar disorder. For many years, I was prescribed anti-seizure medications as mood stabilizers — a known off-label use for certain medications. Were they also protecting me from seizures during those years, unawares? Is that what delayed the epilepsy diagnosis? Or did I develop epilepsy this late in life?

More important to my self-understanding, during those years when I took anti-seizure medication, did they in fact dampen the mystical certainties that mark my natural (un-medicated) bipolar mind?

Bipolar moods take their toll on memory, so I cannot recall. For me, this amnesia makes it hard to connect my internal emotions to events in the world. But I have kept years worth of journals, for just that reason. If I want to take a month or so, I can review them; I can rediscover what I experienced while on those medications.

Where do I go from here?

I’m not sure whether I will make that journey. What if I learn that during those years on anti-seizure medication my thoughts were dull, unproductive, meaningless, spiritless? Would you keep your mystic revelations and heightened intuitions if it meant daily headaches and unpredictable physical responses and loss of speech?

I always thought that if I were diligent and careful, I’d finally understand my own mind and would be a good steward of my health. (This, I hoped, would make up for some questionable behavior in my teens and 20s. Some of you will know what I mean. Enough said.)

I thought that, with all my wisdom and insight and proper eating and self-discipline, I’d continue to manage that pesky bipolar stuff just fine, and nothing else would ever surprise me about my brain.

How wrong I was! There are storms within; perhaps heat lightning; perhaps an aurora borealis. I had no idea of the shocks I was giving myself; the shocks that were teasing and tickling various parts of my self, with increasing discomfort.

To my knowledge, there is no insight or attitude or self-discipline that will control the lightning. Perhaps good health, survival, will require it be dampened, muted, restrained. I don’t know if I will be grateful for that.

Perhaps I will simply be grateful there ever was light at all.