What do seizures feel like? Well, it really depends
25 May, 2023
What do seizures feel like? The experience of seizures can be a great curiosity to many, if not most of us. And often, that curiosity can be even stronger for the ones who loathe the seizure with a stark passion that is reserved only for those who know them all too personally.
Because most of us take for granted having a feeling of control over our own thoughts and our mind, it makes us wonder about that control being taken from us in the event of a seizure. And whether we have had a seizure, or have never had one, the idea sounds quite terrifying…
What must it feel like to lose the authority of our mind and our body?
Even as someone who has personally experienced many seizures myself, I am intrigued by the way that others experience their own seizures. While staying in the Epilepsy Monitoring Unit in my local hospital for a few months, bearing witness to my roomates as they were taken by their own personal seizure events was profound and deeply emotional as an onlooker. I had never actually witnessed a seizure before then. I’d only experienced them.
I was humbled and moved by the way the seizure would so unexpectedly, and entirely engulf my roommates. It felt unjust and frightening to see them be taken like that. It felt foreign and strange. And, I slowly started to see the individuality of each person’s events. Everyone seizes differently…
A seizure is like a (cruel) snowflake. Depending on the part of the brain it starts, the intensity of the electrical activity, whether it picks up or loses power as it goes, the route within the brain that the activity takes; they all dictate how the seizure plays out. Although, in someone with a lower seizure threshold, (epilepsy) it’s likely that they have their own personal seizure types that are often quite similar. Our individual seizures are like fingerprints –one of a kind.
And so, the possibilities are truly endless, as far as the way they play out in each of us.
Because my own seizures are thought to originate in an area that is responsible for memories, emotions, and and of fear specifically, the seizures that I experience always begin with stark terror. Due to this symptom of fear, for over a decade, I was treated for anxiety and psychogenic non epileptic seizures. And due to this understandable misdiagnosis, and my own stubbornness, I experienced Tonic Clonic (grand mal) seizures every few weeks, and smaller focal seizures every single day, with no effective relief.
Throughout those years, I began to blame myself for not working hard enough with my therapy, my meditation, yoga, and general destressing. It wasn’t at all my fault that I continued to suffer. My treatment plan was just ineffective. And then I was diagnosed with Epilepsy. My treatment plan changed. And slowly, my seizures lessened. I finally had space to heal. And finally believing that simple piece of truth: that it wasn’t my fault, has opened my life, and has given it back to me in a way that I hadn’t realised would ever be an option.
With my present medications, I no longer experience Tonic Clonic seizures, and the smaller focal seizures come significantly less often. When I do start to have obstinate clusters of focal seizures, I have a rescue medication that can quickly stop them from their unrelenting course.
Below is a small piece, that is my own experience of my seizures. Perhaps this can open a dialogue. And a way to bring people: the curious, the kind, the lost and the lonely –together. Please feel free to share your own experiences with seizures in the comments.
It’s ok
Sometimes when my seizures come, as they awaken and activate; they begin to cluster, and come in successive waves. As the undeviating sensations of terror suddenly begin to light up my brain and burn into my thoughts, the concept of who I am, has no room to exist, which leaves only space for boundless fear. I am being attacked and drowned with nothing to grab hold of. That thing that lives silently inside me, has awoken. It is fierce and ruthless and it’s gaining power.
The first worldly thing that I am often able to notice, that is separate from the terror and emergency of the event within, is a fragile mantra, that I believe starts just after the seizures do. It starts and continues beyond my conscious power or comprehension, so I don’t actually notice it right away amidst the fervent war awakening inside me. But it seems to begin softly as a gentle whisper from very deep… a small voice, lost amongst everything that is loud and frightening and happening without a sound…
“it’s ok… it’s ok… it’s ok”…
As the alarms continue to gain the strength and rhythm that I know have the power to bring me down, the mantra from inside, escapes audibly, a little louder; more determined. It is made from kindness and sad conviction…
“it’s ok… it’s ok… it’s ok”…
I am usually alerted to it by the the “tsssssss” at the end of the “it’s” and in an edgeless moment of panicked clarity between the waves –I wonder for a second if I’ve been saying it too audibly, if anyone around me has heard it, or if anyone is hearing it now…
And then another seizure hits my frail, fragile mind and that question doesn’t matter again. That question doesn’t exist at all. It instantly becomes dust and blows away… What matters in the small moments of vaguely functional clarity, is getting somewhere private in time to take the medication that will hopefully stop this, before the seizures take the last remnants of my control, abilities, or feigned emotional organization down…
“it’s ok… it’s ok… it’s ok”…
These soft tiny words are the only strength within me now. They are tethered to who I am, and they are trying desperately to help me, trying to keep me, trying to remind me. Even in the growing moments that I don’t know who they are, who I am, or that they are there at all, they are fighting for me. And when I do, inevitably come back to myself, they are there for me to hear them...
Another wave hits me, and I am being inhaled into a growing, foreign, but oddly familiar world of disorganized visions, half digested nightmares, and torturous misunderstandings; a poisonous soup of raw, sharpened evilness… and then, as their pulse naturally wanes…
“it’s ok… it’s ok… it’s ok”…
I get to the bathroom to take my medicine. I fumble with it… overwhelmed, faltering, tripping. The familiar burn in my nostril gives me a quick, recognizable feeling of safety. I try to calm myself in the small gaps between the seizures, with a collection of memorizations that come up easily from years of use… but I cannot connect to the words yet… I recite them quickly and dutifully, regardless…
“Ride it out, “It won’t last forever.” “You are stronger than you know.” “You always make it through.”
None of this seems believable, genuine or quite understandable. And another wave comes and goes. Again I am engulfed in purified fear. And again… I come up, gasping for air…
“it’s ok… it’s ok… it’s ok”…
The medicine slowly starts to calm my brain… starts to calm the crashing waves ever so slightly. I feel a sensation of inflating openness in my head as it starts to take effect, The seizures ferocity slow and weaken. The gaps between the waves, become longer. I text my husband, he tells me that it’s ok, and that I’m strong, and that I always make it through. And I am gradually able to hear what we are saying to me,
“It’s ok.“
My broken body is washing out of the ocean. And getting more breaths in… I take a deep breath. And hear the silence inside of me. I feel a humanness, a connection to myself, that before the seizures started, I took for granted, and could not notice.
Right now I take nothing for granted. I am in awe, and relieved from deep within. I am consoled, grateful. Inside of me, once again, is only me. I feel strong, powerful, sad, tired.
I fought a war. Or, at least, I made it through a war. But I was alone. And I am still alone. And I know from experience, that they will come back whenever they want to. They will awaken again, and they’ll take hold of me. But I am strong, feisty. And I know what to do.
I go back to my work… There are things to get done.
***
We all endure challenge, we are all astounding and interesting; and we all have an inherent desire to understand the experiences of others. If we genuinely cultivate that desire; magic, thoughtfully pieced together from connection and passion will prevail…
Thank you again my friend, for your support,
Here is a link to some seizure first aid
Let’s meet here again next Thursday,