The Sleepless Nights of Epilepsy
Sleep, a fundamental human need, has become an elusive luxury for me. Ever since my epilepsy began to worsen, I've found myself battling a constant fear of slumber. The mere thought of drifting off into sleep sends a shiver down my spine.
Epilepsy auras after DBS
This fear intensified significantly following my surgery for deep brain stimulation (DBS) for dystonia on November 22, 2023. Since then, my epilepsy has been acting up more than ever, manifesting in frequent auras, a symptom I had rarely experienced before. It's a strange sensation to know when a seizure is coming, like my body is giving me a warning sign to prepare.
One of the most frustrating and exhausting symptoms of epilepsy is the overwhelming tiredness that often accompanies it. During an aura, I feel incredibly sleepy and drowsy, making it difficult to do anything but rest.
It's as if my body is shutting down, bracing itself for the seizure. After a full-blown seizure, I'm usually out of place for a couple of days, feeling as though I've just run a marathon.
My muscles ache, my head pounds and I'm completely disoriented. It takes time for my brain to recover and for me to feel like myself again.
Sleep anxiety triggers seizures
Adding to this struggle is the anxiety stemming from a traumatic experience where I had a seizure shortly after waking up. This incident has ingrained a deep-seated belief that sleep is a precursor to an epileptic episode.
As a result, I find it incredibly challenging to relax and get a restful night's sleep. The constant worry and stress have only exacerbated my epilepsy symptoms, leading to an increase in the frequency and severity of my seizures this year.
Consequently, my doctor raised my carbamazepine dosage from 200 mg to 500 mg. While this adjustment has somewhat controlled my seizures, it has also made me feel more drowsy and sedated.
Meds and seizures disrupt sleep
Some mornings are particularly tough, as I struggle to stand due to the heavy medications. I've started using a walking stick to assist me to the bathroom, especially when I'm experiencing an aura.
On nights when I anticipate a seizure, I take a higher dosage of medication, but this often results in difficulties waking up for morning appointments at the hospital. I've tried to get sufficient sleep, but it's a constant battle. Sometimes, I even need my mother's assistance to stand up after a night's sleep.
Sleep has become increasingly scarce and expensive for me, with only a few days a month offering proper rest. This issue, which arose after my brain surgery for dystonia, has made me deeply appreciate the rare nights of quality sleep. I envy my dad, mom, and sisters for their sleep sometimes; I just wish I could sleep, too.
A vicious cycle
It's ironic that the lack of sleep could potentially trigger seizures, yet finding proper sleep remains a persistent challenge. I've been discussing this Catch-22 with my doctor, hoping to discover a viable solution soon.
Without proper sleep, nobody can be effective in their daily life. More-so, you need more sleep than usual if you're sick.
Epilepsy was under control for so many years until the start of this year. I got to go through everything again due to the surgery that happened in my brain.
God, being patient takes all my patience away. It's a war within. I wish this war came with peace so I could enjoy my life someday.
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