While avoiding as much contact with the world as reasonably possible as a husband, father and self-employed writer provided some sanctuary, I remained assailed by accumulating effects, both psychic and physical.
One primary psychic effect crept into my awareness over the first day or so. Similarly to Keppra™, it stifled my will to act, but by different means.
Of course, the general trepidation drove me to actively avoid novelty—shunning news sites, putting off emails, and hoping whoever called would hang up by the third ring.
Still, this evasion of the new didn’t explain the difficulties I noticed in doing familiar, everyday actives. While the end effect was the same as with Keppra—that all these newly required decisions exhausted me mentally —the mechanism felt different. This might first appear too fine a distinction bother with, but the influence of Vimpat™ spread wider, infecting far more parts of my life, starting with what emotions went absent.
Keppra had made every decision effortful by severing the emotional connections between observation, choice, and action that enabled swift, half-conscious, frequently unconscious actions. These then required effortful thinking and marshaling of arguments.
Vimpat, on the other hand, seemed to sever not the subconscious emotional connections that allowed immediate decisions and action, but my personal attachment to everything—nothing seemed connected to me. Including myself. A mild form of disassociation closest to depersonalization.
While I felt no immediate connection to my life, our house, our things, all these things remained logical—I understood why I should go to my computer, why answering emails was necessary, why I was here, in this particular apartment, with these two people—wife and son.
But nothing mattered because it somehow wasn’t actually connected to me. As if I were inhabiting another person’s life, though I understood wholly that it was my own.
Given that dissociation is strongly correlated to trauma and that every new thing filled me with trepidation, this does make some sense—this isn’t me, isn’t mine, therefore whatever happens doesn’t affect me, the real me. Not that these thoughts occurred then. Only in retrospect can I articulate this surmise.
Without direct emotional connection to my life, I had no impetus to do anything. As such, everyday things became effortful, as they had under the influence of Keppra.
As before, I had to force myself to do things. Every action, even dressing, getting more coffee, opening email, saying goodbye required a conscious decision, many times demanding an act of will to find good enough reasons to be willing to expend the energy on whatever.
There was nothing I simply wanted to do—not because I thought I’d fail, or that it was too much work, or that I’d rather be doing something else, but because it had no real connection to me. Succeeding, failing, solving it, whatever… irrelevant.
All made worse by constant trepidation and the mental exhaustion from simply functioning close to normally: I did have things to do and responsibilities to fulfill. Intellectually, I understood this and the whys and importance of whatever—in fact, I trotted these very reasons out in order to act—but emotionally, there was nothing. An absence.
In spite of strong similarities in the side effects of Keppra versus Vimpat, four things stood out as quite different:
First, an intense vulnerability infested my thinking, spurred by ubiquity of dread and feelings that the next disaster lies in wait to spring upon me.
I was pitifully grateful that my wife was part of my life, and was sure I could, even would lose her as a matter of course.
There was still enough I left of me to understand why I felt like this (the drug) and to observe myself acting in ways that didn’t seem right—distancing myself, subtly avoiding interacting with my wife and son. Over the few days this lasted, I began to clearly understand why people in this weakened, vulnerable state would push other people away: A combo of protecting oneself from the inevitable loss, and a vague, I want to call it self-revulsion—but that’s too intense. The actual feeling comes closer to dissatisfaction or disenchantment. I didn’t sit in this long enough to discover it’s precise nature.
In fact, I averted my mind whenever possible.
My connection with other humans became warped.
A second vexing effect: I couldn’t grasp simple things that a couple of days before, I would have apprehended almost instantly. Now my brain swam through cold molasses. I had to double check myself, repeatedly, over simple tasks. I got rather stupid, frankly put.
The third unnerves me even now: imaginings of self-harm. Not the desire to harm myself, per se. That’s a call doctor right NOW thing, which I recognized even then. Instead, I caught myself imagining what could happen if I dropped the Kansu knife I was using on my foot, or if the blade slipped while I sliced, even what would happen if I tripped when I carried it…. I.e., there was a particular, not obsession, nor fascination with self-harm, but entertainment of that kind of thought in ways that I was unfamiliar with. I was aware of myself enough, I think, to have acted against any spur of the moment decision…
Lastly, while I avoided human interaction and novelty, I reacted against the complete in-turning that Keppra had caused by acting out of character—or perhaps, in character with great exaggeration.
At times I was also almost manic, overreacting to things, especially minor frustrations, irksome happenings, and everyday annoyance—blowing them all up into anger. Mind you, I work at home alone and interact mostly with machinery, machine interfaces or pens and paper. I rarely take calls, but write dozens of emails a day. That’s most of my human contact from 9 am to 3 pm, when my son arrives back home.
Looking back, I imagine this flaring of fury at minor inconveniences as sips of feeling, and this exaggeration as my sole path back to the connection with life that I lacked: so too chair dancing.
Music plays a massive roll in my life and has for as long as I remember.
I dislike working without it, and, as I found out while writing A Perfect Blindness, music has penetrated my mind in ways I’d never imagined. Frequently, a line I’d started writing would leap onto the page formed from lyrics of songs decades old, sometimes as sung, sometimes modified, but always, clearly, from something I used to listen to. In fact, the book follows two musicians and their band in Chicago of the late 80s—the time I lived there.
While living in Chicago, I danced in clubs. A lot. Actually, I started dancing in clubs and bars back in high school and only stopped when I moved to Mexico City. Now I dance at home, mostly while sitting, by tapping feet, joggling legs, swaying this way and that, lifting arms, moving hands to match the feeling of the song, sometimes singing, quietly, when I know the lyrics.
Movement through space to the rhythm of fitting and especially familiar music—dance—allows me to assert control over my physical self and connects this self to emotion with an immediacy that’s difficult to rival.
Movement to music is hardwired into who I am as a functioning human.
While suffering from the personality changes evoked by Vimpat, I never stopped playing music, and much of my collection is beat-driven, with rhythms that can easily be danced to. Before this drug ensnared me, I would burst into chair dancing whenever the spirit of the song and circumstances inspired me—fairly often.
Still, I found myself chair dancing, though far more rarely. When I danced, usually by moving my hands or arms to a rhythm, it grounded me and felt good, diametrical to the sense of dislocation and un-grounded-ness through which I floated rest of the time.
Especially the sense that while I did exist inside the skull of this body, it wasn’t mine. This short-circuited my sense of agency—the awareness of that one can think, act on that though, and have that action affect the world.
As I’ve started exploring elsewhere, agency relies upon one being able to identify oneself as the originator of a desire to act, acting on that urge, receiving feedback on the results of this act, and having them all align—the connecting of these happening in the parietal lobe.
Agency—this closed loop of thought, action, and response—is key to having a sense of self at all. So while I floated through this other person’s life, my exercise of agency when hearing a song, desiring to move to its rhythm and feeling myself move in concert all fought against the dislocation. It reconnected a desire to an action, and then to an effect—reestablishing that yes, as strange as everything feels, I’m here. Someplace.
Yet, the nebulous trepidation enshrouding me would soon reassert itself, and my rediscovered self hid from certain hurt once again in dissociation—not my life, thus not my pain.
A rising number of miscellaneous physical effects emerged as the days progressed: starting with my tongue continuing to feel scalded—tingly and swollen—which grew ever more distracting. Soon, I started “hearing” a vague background noise—not ringing, but a constant presence, like quiet white noise. I knew I wasn’t actually hearing anything, but my brain interpreted whatever impulses these were as auditory.
Around that same time, I started having the impression of a pressure on my teeth, especially molars, as if I were chomping down on something very hard, though my jaw was hanging slack. This faintly reminding me of a line from Neil Young’s “Sugar Mountain”—“that taste you get in your mouth when you’re finding out it’s real.”
Then at random times, I felt my heart take off thudding quite strongly. This wouldn’t last very long, a matter of seconds, but it was unnerving. As if much of the Autonomic nervous system was dialed up to 11. (When researching this post, I discovered that this symptom is very serious and demands calling the doctor and stopping the medication. Nice to learn all this several weeks too late.)
Finally, an unctuous sensation developed across my arms and shoulders that was loosely connected to the sense of dread. I wanted to wash it off, though of course, this was a phantom sensation. It dissipated slowly, lasting several days after I ceased taking Vimpat.
After 4 days of these changes and sensations, I decided to act, as I had with Keppra—by doing the research online, particularly on PubMed.
Before exposing the highlights of the research, I need to point out that the clarity and precise vocabulary of my observations to this point are not thoughts had while under the influence of Vimpat, but rather ideas born from distance and retrospect. I did take concurrent notes. Some effects did last after ending Vimpat. Still, my thinking during that time was muddy and slow. Further memory itself is plastic and affected by things that happen later, such as doing research. At the very least, later events can direct what I’m paying attention to now, and it’s quite possible that they have manipulated my memory. Thus the clarity shown here is an artifact of hind vision—while experiencing the dislocation, little was clear, other than that something was seriously wrong.
That said, the research pointed out that one should “Get medical help right away if you have any very serious side effects, including fast/slow/irregular/pounding heartbeat”, as well as swollen lymph nodes. Several articles mention that any swelling is to be watched for carefully and reported. After reading this, I palpated my neck, and sure enough, it held swollen glands.
This combined with my tongue added up to an allergic reaction.
Still, other reasons discovered to call the doctor immediately: personality alteration, suicidal ideation, depression, poor impulse control—such as wondering about and maybe acting on what a knife would do if it fell into my foot.
Having experienced what therapeutic chemicals have done to me and my brain makes me very sympathetic to psychiatric patients portrayed on TV and in film as refusing their meds, hiding pills and capsules under the tongue or in cheeks by the gum line, perhaps the most famous of all: One Who Flew Over the Cuckoos Nest.
I get it now: meds can warp you, twist you out of shape—regardless of the benefits, you lose some part of yourself. Likely the most important part.
The research also revealed that Keppra and Vimpat function differently to prevent seizures, which goes a long way to explaining the different ways they altered my personality.
Keppra works globally, to reign in generalized electrical activity in the brain, for both partial onset and generalized tonic-clonic seizures.
In contrast, Vimpat works by suppressing only excessive activity, specifically for partial onset seizures—those that start locally, such as from pressure on the temporal lobe, which can then generalize into tonic-clonic seizures.
After doing an hour or so of online research on Vimpat and observing several symptoms that require calling the doctor immediately, and probable abandonment of the drug, I called my neurologist on Thursday, 4 days into full-on Vimpat therapy.
That evening, I went back to phenytoin. For the third time in my life.
By the next morning, the symptoms had abated. I felt “grounded” in my life, as if I could move faster, better, more accurately. I could think far, far faster—things made sense again, and I could act on things immediately. No intellectual negotiations with myself needed to make coffee or open my email client. While most of the physical effects remained, their volume had lessened. Some of the psychic effects still nagged as well.
Waking up Saturday morning, I still noticed that white noise, but even less so. Not in volume (loudness) as it was never actually loud, but in fullness—it seemed less present. (Tinitis a very rare side effect: 0.31%)
That unctuous feeling remained. I knew nothing was physically on my skin, but I felt something still coating my arms and shoulders. It was connected, somehow, to the sense of dread and vulnerability I’d felt so strongly on Vimpat. Though growing weaker, it remained creepy and ubiquitous. In a few of days, it vanished and dread only hit when I read items that can legitimately inspire dread, such as threats of nuclear war with North Korea.
That “pressure” on my teeth bothered me occasionally, as did that thudding of my heart, which lasted but a few seconds, but both vanished by the end of a week.
A week after abandoning Vimpat, I felt wholly grounded and crisp in movement. The only slight effect left is a faint white noise in my ears, which has nearly vanished three weeks later.
These experiences of profound personality change returned me to my undergraduate years when I was studying psychology. I was sure I had found my calling: to be a Clinical Counseling Psychologist. I had even though about graduate school, and what education I needed to practice.
Yet during an upper division level course in Personality, it’s formation, disease, and cure, I had a crisis. There were multiple fully formed models of personality, describing how it is developed. It then explored how pathology and treatment worked in each one. But they were all different, contradictory and worse yet, none of them work for more than a narrow subset of neuroses, and none work well on psychosis, other than alleviating certain specific symptoms, those dependent upon the therapy used.
Disillusion, I abandoned my plans to pursue my future in psychology, quipping that it was “one step up from witchcraft.”
It would be several decades before I read the book that would explain what I’d observed and that caused me to radically change my life plans: The Structure of Scientific Revolutions by Thomas Khun.
Next up: Better Living Through Chemistry: Epilogue (One Step up From Witchcraft)
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