January/February 2023 • PharmaTimes Magazine • 23
// PATIENT EXPERIENCE //
Yes brainer
Epilepsy and mental health – a patient’s perspective on breaking out from conceptual silos
Recently, the World Health Organization publicly endorsed introducing the new term ‘brain health’ as a key concept to ensure that diseases typically held within either neurology or psychiatry are no longer considered in isolation.
The term unites what are discrete but closely related medical conditions directly affecting the brain. Using this umbrella term encourages the whole healthcare community – including clinicians, patients and families – to break out of a siloed mentality and identify when health conditions are closely interlinked with each other.
As someone who frequently stands at the crossroads of interconnected brain health symptoms, I can confirm how vital this shift is in order to ensure the best support for people trying to live with and control epileptic seizures and epileptic mental health issues simultaneously.
Mind over matter
From my own experiences, as well as those of many others, it’s clear that psychiatric ill health is part of the epilepsies.
For example, up to 6% of people with epilepsy experience psychosis, with the figure rising to 7% among those, such as myself, who have specifically temporal lobe epilepsy, and as such are at an almost eight-fold increased risk of experiencing psychosis compared to the general population.
Crucially identified, we have a two-way link – a person’s psychiatric symptoms may worsen a person’s frequency and severity of seizures, and vice versa; a person’s seizures and/or cause of seizures may worsen a person’s psychiatric symptoms. The bottom line is that if my mental health is not ok, my seizure risk is far higher, and vice versa.
There is also a direct link between epilepsy and a person’s quality of life. The sad reality is that due to a myriad of factors, people with epilepsy can experience a near constant state of worry and exhaustion.
Contributing factors range from the draining effects of the seizures themselves, the side effects of medications prescribed, common sleep disorders and psychiatric challenges – each of these is potentially associated with the altered neuronal physiology and microanatomy underlying the epilepsy.
Reality bites
Social stigma is another challenge affecting many people with epilepsy. The Headway report highlights that over 50% of people with an epilepsy describe experiencing stigma. People shared that the stigma associated with epilepsy can cause them to delay seeking help and therefore accessing care.
The social impact for many includes negative effects upon their employment, personal relationships and many other aspects of their lives. The negative impact of stigma upon mental health and seizures is very real.
This picture of the complex, multi-directional interconnections of the epilepsy symptoms is an important illustration of why understanding overall brain health is crucial. Health issues within the field of the brain cannot be neatly compartmentalised under the label of either neurology or psychiatry.
This has many implications for how we address challenges. It calls for clinicians and other healthcare professionals to work in multidisciplinary teams, and for us to empower patients, parents and families through education.
Ultimately, it necessitates that patient and family groups, industry and the healthcare system work collaboratively to address gaps in understanding, treatments and care delivery. We must break out of our conceptual and disciplinary silos and work together.
Torie Robinson is Founder & Editor of Epilepsy Sparks. Go to epilepsysparks.com
PharmaTimes
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