I hadn’t been feeling very well for several weeks and then last night it happened. This post is a description of what it’s like to be an epileptic, written simply to document my experience. My goal here is to do that, almost in a dispassionate scientific way, and if it helps others going through similar experiences — feedback I often receive from such posts — that’s wonderful. My post is not a call for sympathy or help, although those are understandable and kind responses, and it’s not a complaint either. It just is, because what I am is what it is.
I’ve realized that my blog has become about not just documenting how amazing, freakish and immensely fallible that anatomy can be in other species, but also about my own experiences with my anatomy (and physiology) failing, as per these two prior posts about my shoulder and brain (more links therein). Sharing these experiences gives me strength and clarity, even if some of that emerges from partly detaching myself from the emotional nature of the experience and trying to look at it from outside of myself. I can be a private person, so feeling like I can discuss something uncomfortable and vulnerable makes me feel like I am growing, much as I innately resist that.
Stomach-Churning Rating: 1/10; no fun events described, but no images either.
I’ve had enough experience now as an epileptic that I look back on my seizures with disappointment (“Oh damn, not again.”) but also familiarity (“OK that happened; I know how things will go now.”). They are terrifying at the time, especially for my family, and my disorientation when emerging from unconsciousness with strangers around and with a gap in my memory is nightmarish.
I was watching a documentary about the Jutland battle in WWI while my daughter was put to bed. Then… I woke up, maybe 20 minutes later, unsure what was going on. There were two “first responders” (emergency non-paramedics) present, one of whom I eventually recognized from my prior emergency experiences in recent months, trying to talk to me with my wife. I was impressed to later hear that they’d come within 5 minutes of being called; not bad for life in a small English town. I came to realize that my right shoulder hurt again (from violent spasms), reducing it to almost a one-degree-of-freedom joint (mostly able to move fore and aft; almost zero pronation/supination without intense pain), reminscent of Ichthyostega‘s. I was surrounded by tissues wet with blood from my lip, where I’d again bitten myself during my fit. I could sense my racing heartbeat and fluctuating temperature, other hallmarks of my pre- and post-seizure symptoms. My vision was blurry, with my eyes usually becoming dilated during a seizure.
But the predominant feeling that takes an uncomfortably long time to pass is the “post-ictal state“, a mind clouded by confusion, slowly becoming aware that my neurons are misfiring but are beginning to sort themselves out. I sometimes irrationally want to just go back to sleep and not talk, and need some rational insistence from carers that we can’t do that right now. It is this vacillation between consciousness and unconsciousness, in a grey area in between, that I find most disturbing, as I cannot completely trust my own mind, disbelieving what is happening (“Is this real?”), and sometimes I lapse back into seizure(s) again. This is a powerful example of the frightfulness of uncertainty. As a scientist, so reliant on my mind, it is horrifying to feel like it is out of control. It also conjures up memories of observing my mother’s mind declining with Alzheimer’s syndrome, and those are vastly painful.
As I became able to put words together semi-coherently, and as the medics poked and prodded me to do tests on my symptoms (I had a cannula in my left arm’s blood vessel by now), discussion turned to whether to take me to the hospital once the paramedics arrived with the ambulance. In the past, there was no question of the need for a trip to Accident & Emergency (A&E in the UK; same as the ER in the USA).
Yet now, with almost 2 years of experiences behind me, I (and my carers) have come to know my better seizures from my worst ones. And given that A&E normally involves >4 hours of lying around in a noisy room, constantly disturbed by checkups or screaming patients, it is far from restful and rest is what I tend to need most. After an hour of vigilance, my symptoms faded and I became more able to answer queries, even to talk over options. We agreed that I could stay home, try to rest, and go to A&E if I had another seizure.
I am glad to say that I got a full night of rest and I feel a lot better today. That I am able to think clearly enough to write this post gives me reassurance. After past seizures, I’d often be unable to do much except take naps and gawk slack-jawed at the TV screen, with my vision still blurred (one eye even seemed to change shape post-seizure once, and I began seeing things in the corner of my field of view that are not truly there). So the bright side of this post is, maybe my medications are working better now, and maybe we will get this epilepsy under control, but I keep saying that every 2-3 months and then being proven wrong by another seizure, so a lot of uncertainty looms.
Nonetheless, seizures involve a “refractory period” that makes further seizures less likely for some time period, so odds are good that I can feel more secure while I recover from this event, which usually takes two weeks or so to get my brain feeling closer to “normal”. Even so, my mind remains clouded by these post-ictal feelings, weighting me down with fatigue that is the most chronic challenge I struggle against now as an epileptic. It leaves me unable to do as much as I once could, with a backlog of work growing behind me like never before. This is the “diminishing” that I lamented before; it is not just old age.
That’s what one experience was like for me, and I’m glad that it was far from the worst “neural storms” I’ve suffered. I hope that readers find it interesting. Now that my battle is over for now, I’ll take some time to find out how that Jutland battle turned out.