By: Guy W. Stoker
Photo Credit: Photo provided by Guy W. Stoker
Music & Epilepsy: The Perfect Roommates
Music and epilepsy are two phenomena that affect multiple parts of the body and mind
simultaneously, and both have existed for tens of thousands of years. Each has the ability to
enter or alter a person’s life at any moment, irrespective of age, gender, nationality, religion,
employment status, or financial stability. They are both singular words that encompass a vast
array of interpretations and experiences, and in certain contexts both can result in prejudice,
misunderstanding, and social or professional exclusion.
According to the World Health Organization (WHO), epilepsy is defined as follows:
Epilepsy is a chronic noncommunicable disease of the brain that affects around 50 million
people worldwide. It is characterized by recurrent seizures, which are brief episodes of
involuntary movement that may involve a part of the body (partial) or the entire body
(generalized) and are sometimes accompanied by loss of consciousness and control of bowel
or bladder function.
While the WHO estimate stands at around 50 million people, many researchers and advocacy
groups suggest that the true global figure may be closer to 65 million. Several factors
contribute to this underestimation.
One major factor is underreporting. Due to the nature of some of the more than forty
different seizure types, a seizure can sometimes pass completely unnoticed. For example, a
mild focal seizure may manifest only as momentary staring, blinking, or subtle movements
such as rubbing the hands.
In addition, individuals who live alone and experience seizures during sleep may not realise
that what they are experiencing is epileptic activity. As a result, the condition may go
undiagnosed or unreported.
Other contributing factors involve the potential consequences of diagnosis. In many parts of
the world, people fear the loss of independence that may follow a diagnosis of epilepsy, such
as losing a driving licence or facing discrimination in employment. In some countries,
epilepsy can even affect legal rights relating to marriage. In extreme cases it has been cited as
grounds for annulment or divorce.
Stigma remains one of the most widely cited reasons for underreporting. Across cultures,
epilepsy has long been misunderstood. In societies with great linguistic diversity, there are
communities where the word epilepsy, or its direct equivalent, does not even exist. Seizures
may instead be interpreted as mental illness, spiritual disturbance, or supernatural possession.
As recently as 2022, there were reports of a young boy being subjected to an attempted
exorcism by a camp counsellor after experiencing an epileptic seizure.
Another complicating factor is that seizures can also occur for reasons unrelated to epilepsy.
Conditions that may produce seizure-like events include dehydration, febrile seizures,
psychogenic non-epileptic seizures (PNES), post-traumatic stress disorder (PTSD),
intoxication, and drug withdrawal.
So where does music enter this picture?
At first glance, music and epilepsy might appear to belong to entirely separate worlds, one
artistic and expressive, the other clinical and neurological. Yet the relationship between them
is deeper and more complex than it may initially seem.
The field of music itself encompasses an enormous range of professional roles and
specialisations. Musicians may work as performers, composers, singers, songwriters,
conductors, arrangers, orchestrators, producers, sound engineers, or promoters. Each of these
roles may span a multitude of genres and subgenres including Pop, Rock, Folk, Celtic,
Country, Jazz, Blues, EDM, Metal, Orchestral music, Film and Media scoring, New Age,
Classical, and Opera.
For some people living with epilepsy, music forms part of the seizure experience itself.
Certain focal seizures can involve musical hallucinations, where the person hears melodies
or musical fragments that are not present in the external environment.
Conversely, there also exists a rare condition known as musicogenic epilepsy. This is a form
of reflex epilepsy in which seizures are triggered by a specific external stimulus, in this case
music. In musicogenic epilepsy, a particular piece of music, musical passage, or lyrical
moment can trigger a seizure in a patient specific way. The trigger is often linked to a strong
emotional response associated with the music.
One well known case involved a young Japanese girl who experienced seizures only when
hearing the song Happy Birthday. One of the leading researchers in this field is Dr Peter W.
Kaplan of Johns Hopkins University Hospital in Baltimore.
Just as epilepsy can be misunderstood or stereotyped, music is also subject to cultural
assumptions. People are often judged or placed into social categories based entirely on their
musical tastes or the type of music they perform or compose. These assumptions are
frequently inaccurate, yet they remain surprisingly persistent.
My own life sits directly at the intersection of these two worlds.
I am a pianist, composer, and singer songwriter who was born with epilepsy. Because of the
variability of the seizures I experienced over many years, and the absence of clear evidence in
tests such as EEG, fMRI, and PET scans, I was not formally diagnosed until my late twenties,
shortly after my wedding.
Receiving a diagnosis after years of unexplained experiences brought a sense of clarity, but it
also introduced a host of new challenges. I lost my driving licence, which in turn affected my
ability to work as a professional musician because I could no longer easily travel to rehearsals
or performances. Some people began to worry that I might have a seizure on stage in front of
an audience. Suddenly there was a long list of things I was advised not to do.
Finding the right medication involved a lengthy process of trial and error. Alongside this
came the potential side effects of anti-seizure drugs including anxiety, depression, fatigue,
cognitive fog, weight gain, and emotional instability. Questions also arose about whether I
might be a candidate for surgery.
Yet one thing this disease could not take away from me was my music, my ability to play,
and my ability to compose.
My first realisation that these two central parts of my life might be connected came in 2009
when I attended the First International Conference on Music and Emotion at Durham
University. On the final day of the conference one of the speakers discussed musicogenic
epilepsy. That moment marked the beginning of a new journey for me.
I later contacted Dr Peter W. Kaplan and travelled to Johns Hopkins University Hospital to
meet with him. He subsequently invited me to co-author a paper for an international epilepsy
conference in Prague in 2011, which included a symposium on epilepsy in the arts. The
symposium was led by Dr Stephen C. Schachter, Director of Neurology at Harvard Medical
School.
During the question-and-answer session I raised the issue that while many art forms were
represented in the symposium, music itself was largely absent as a direct artistic response to
epilepsy. Dr Schachter invited me to address this gap and present my work the following year
in Rome.
While researching musical representations of epilepsy, I discovered that many pieces, songs,
or bands that referenced “seizures” or “epilepsy” were not actually related to the condition at
all. Instead, the terminology was often used metaphorically for chaos, intensity, or even
sexual imagery. One example included the lyric: “I’m gonna f**** you till you have a
seizure.”
However, there were some genuine artistic responses. Notable examples include When the
Spirit Catches You by Dr Cynthia Folio of Temple University, Seizure Metaphor by Dr
Bryn Kip Haaheim of Kansas State University, and Angel in Our Corner by the late Jim
Armstrong.
Despite these examples, a significant gap still existed. I therefore set out to explore this
territory myself through a musical project titled Ictal Variations.
Ictal Variations is a twenty-track musical exploration of epilepsy viewed from four different
perspectives: the patient, the carer, the medical profession, and the outside world. The work
explores both specific seizure experiences and the broader social realities of living with
epilepsy. To do this I employed a wide range of compositional techniques including
traditional notation, songwriting, sound art, and graphic scoring.
Some of the tracks are intentionally uncomfortable to listen to, reflecting the disturbing and
disorienting nature of certain seizure experiences.
One example of using Graphic Score is Ictal Rubik’s, a piece inspired by visual artist Dr Jim
Chambliss, who developed epilepsy following a road accident. Chambliss created a series of
fifty four paintings documenting his attempts to understand his new condition, titled Puzzled.
I adapted this concept musically using the structure of a Rubik’s Cube.
Each of the cube’s six colours corresponds to one degree of the whole tone scale. Beyond this
single instruction, performers are given complete freedom. There is no specification of
instrumentation, pitch register, dynamics, timbre, or duration. Every twist of the cube
generates a new visual score.
The idea behind this approach was to highlight the individuality of epilepsy. Every person’s
experience of the condition is different, just as every performance of the piece will be
different, yet all of these experiences remain connected by a common element: epilepsy itself.
In 2025, after discussions with actress, writer, and filmmaker Sandra Cruze, who had
written a musical about her granddaughter’s epilepsy titled Abby Normal, I began work on a
second album titled Purple Universe.
In Abby Normal, Cruze gave a narrative voice to epilepsy itself, an idea that fascinated me
and which I wanted to explore further.
Purple Universe is a ten-track album written entirely in song form. Drawing from genres
such as pop, rock, big band, and musical theatre, it presents three different narrative voices:
the patient, the carer, and epilepsy itself.
Alongside the album’s release I launched the website Purple Chorus. Purple is the
internationally recognised colour for epilepsy awareness, while the word chorus reflects the
idea that collective voices carry further than individual ones. The website serves as a platform
for exploring epilepsy through art, music, and personal experience, while also offering a
space for artists living with epilepsy to share their work.
In the same year I composed an electronic soundscape album titled Fragmented State, which
explores the lived experience of epilepsy entirely through sound and texture.
At the time of writing, I am currently working on a fourth album titled Time, an ambient
album that invites listeners to explore their own emotional and reflective journeys through
music and sound layers.
Epilepsy is a vast, complex, and deeply personal experience, just as music is. For many
people living with epilepsy the condition can be so intricate and emotionally layered that it
becomes difficult, if not impossible, to express fully in words.
Music, however, has the remarkable ability to articulate the unspeakable.
As Dr Stephen C. Schachter once observed, we can often learn more about a person’s
experience of epilepsy from what they do not say, rather than from what they do.
For this reason, I believe that music and epilepsy are, in many ways, the perfect roommates.
