As I write this, we are approaching July 15, the date of birth of one of the most ephemeral but unforgettable voices in music: that of Ian Curtis, the former lead singer of English post-punk band Joy Division. I can sincerely say that Unknown Pleasures is, hands down, one of my all-time favorite albums, which I often listen to while studying, while trying to relax the night before an exam, and even while I did dissections in the anatomy lab in my first year of medical school.
As amazing as Joy Division (which would go on to change gears as pop group New Order) was, the band was equally marred by the troubled life of its former lead singer, who suffered from intractable epilepsy and depression, culminating in him taking his own life at the tender age of 23, just two years after his diagnosis of epilepsy.
This two-year period consisted of more than one suicide attempt, extreme mood swings and emotional detachment because of his anti-epileptic medication, and his seizures being so severe that he was rarely able to even hold his young baby (Tuft et al., 2015). Eventually, the pressure of performing, his unrelenting condition, and fractured personal life were all too much to bear, and he hanged himself in 1980.
Epilepsy affects up to two million Americans, with suicide risk increased five-fold in its victims compared to the rate of the national population (Thompson et al., 2012). Moreover, the literature has found that depression was a powerful predictor of quality of life in epilepsy patients, and is, sadly, one which is still not adequately prioritized when treating patients with epilepsy (Boylan et al., 2012).
Work by Ettinger et al. (2004) has found that in a California cohort of adults with epilepsy and psychological distress, up to 40 percent of them did not receive mental health care. This phenomenon is still all too common. Moreover, literature has found that patients with temporal lobe epilepsy, patients with more frequent seizures, or who use levetiracetam, are all at a higher risk of suicide and should be closely monitored (Caplan, 2016).
Mental Health Afflictions of Epilepsy Patients
Patients recently diagnosed with epilepsy are marred by a sense of the loss of independence, such as no longer being able to drive. It is also harder for them to pursue certain lines of employment. My heart broke when I heard of a medical student diagnosed with epilepsy who will likely have to forgo his dream of going into surgery. All of this, to add on to the stress of the condition, all bear significant weight into the mental health issues that epilepsy patients face (Schachter et al., 2019).
There is a sense of losing control, as the Joy Division song “She’s Lost Control” aptly delves into. Curtis wrote this song about a woman he met who also had epilepsy, and who was trying desperately to find work, only to go on to die from her condition shortly after (Manchester Evening News, 2017). The sad irony is that Curtis’ private life would also be marred by his condition, and he himself would fall prey to this ‘loss of control’ which drew him to take his own life.
Managing Mental Health Needs of These Patients
While looking after the condition itself, psychosocial issues need to be addressed in these patients, with requisite mental health intervention as needed. Patients are also more likely to fall prey to poor health-related habits such as alcohol and drugs (Hinnell, 2010). Addressing the mental health needs of epilepsy patients have been shown to be highly effective in terms of outcomes. Research by Tang, Poon, & Kwan (2015) found that mindfulness-based therapy (MBT) in conjunction with social support were associated with significant improvements in depression, anxiety, mood, seizure frequency, verbal memory, and overall quality of life.
There are also many local, regional, and national epilepsy organizations, which include the Epilepsy Foundation, whose website can be reached at https://www.epilepsy.com/. They provide a number of resources and professionals on-hand to inform and support patients and their loved ones. Ian Curtis himself was a member of the British Epilepsy Association, but sadly, became more reticent when it came to discussing his condition. This is why having a consistent support group is essential.
There has now been a consensus reached by the International League Against Epilepsy (ILAE) on how to manage the psychiatric comorbidities associated with epilepsy. They advocate for screening epilepsy patients for depression at diagnosis, prior to and after starting antiepileptic medications, and at annual follow-up appointments via the Neurological Disorders Depression Inventory for Epilepsy and/or the Patient Health Questionnaire-9 (PHQ-9).
Anyone screening positive needs to receive immediate evaluation and treatment of depression, in conjunction with the patient’s primary care provider and with a psychiatrist if the depression is more severe. Patients also need to be thoroughly educated on the suicide-risk associated with their anti-epileptic medication. And of course, the patients need to be carefully monitored at every visit and between visits as well (Michaelis et al., 2018).
Depression and other mental health sequelae are part of another facet of epilepsy patient management that needs to be emphasized. Ian Curtis is just one high-profile case that proves this point. There are others in much more dire socio-economic situations who are suffering the same condition and resultant constraints to their lives.
However, much like Ian Curtis, many of these individuals, if they don’t lose their lives to their condition, they may lose them from the sheer weight of depression and other psychiatric sequelae that are simply too much to bear. It just goes to show that a multi-team approach is needed in managing these patients and allowing for them to live as normal lives as is feasibly possible.
Boylan, L. S., Flint, L. A., Labovitz, D. L., Jackson, S. C., Starner, K., & Devinsky, O. (2004). Depression but not seizure frequency predicts quality of life in treatment-resistant epilepsy. Neurology, 62(2), 258-261.
Caplan R. (2016). The Elephant in the Room: Suicide in Patients With Epilepsy. Epilepsy currents, 16(3), 137–138. https://doi.org/10.5698/1535-7511-16.3.137
Ettinger, A., Reed, M., & Cramer, J. (2004). Depression and comorbidity in community-based patients with epilepsy or asthma. Neurology, 63(6), 1008-1014.
Hinnell, C., Williams, J., Metcalfe, A., Patten, S. B., Parker, R., Wiebe, S., & Jetté, N. (2010). Health status and health‐related behaviors in epilepsy compared to other chronic conditions—A national population‐based study. Epilepsia, 51(5), 853-861.
Manchester Evening News. (2017, August 28). The real life inspiration behind some of Manchester’s best-loved songs. Retrieved July 05, 2020, from https://www.manchestereveningnews.co.uk/whats-on/music-nightlife-news/manchester-bands-song-lyrics-inspiration-13537337
Michaelis, R., Tang, V., Goldstein, L. H., Reuber, M., LaFrance Jr, W. C., Lundgren, T., … & Wagner, J. L. (2018). Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force. Epilepsia, 59(7), 1282-1302.
Schachter, S. C. (2019). Comorbidities and complications of epilepsy in adults. U: Up to date, Paul Garcia ed. Up to date [Internet]. John F Dashe: Up to date.
Tang, V., Poon, W. S., & Kwan, P. (2015). Mindfulness-based therapy for drug-resistant epilepsy: an assessor-blinded randomized trial. Neurology, 85(13), 1100-1107.
Tuft, M., Gjelsvik, B., & Nakken, K. O. (2015). Ian Curtis: Punk rock, epilepsy, and suicide. Epilepsy & Behavior, 52, 218-221.
Thompson, A. W., Kobau, R., Park, R., & Grant, D. (2012). Epilepsy care and mental health care for people with epilepsy: California Health Interview Survey, 2005. Preventing chronic disease, 9, E60. https://doi.org/10.5888/pcd9.110140