Epilepsy: understanding its emotional and psychological effects and its relationship with mental illness
Intended for healthcare professionals
Evidence and practice    

Epilepsy: understanding its emotional and psychological effects and its relationship with mental illness

Mandy Grant Senior lecturer in prequalifying healthcare, College of Health, Psychology and Social Care, University of Derby, Chesterfield, England
Elizabeth Collier Senior lecturer in mental health nursing, College of Health, Psychology and Social Care, University of Derby, Chesterfield, England

Why you should read this article:
  • To enhance your understanding of the emotional and psychological effects of epilepsy, and how the condition is linked to mental health issues

  • To consider how you could address the mental health needs of people with epilepsy in your practice

  • To recognise the importance of collaborative working between epilepsy professionals and mental health professionals

Epilepsy is a neurological disorder that can have significant emotional and psychological effects on people and may adversely affect their well-being and quality of life. People with epilepsy are at high risk of developing mental health issues such as depression and anxiety due to a range of factors, including the unpredictability of seizures, the risk of sudden unexpected death, limitations to their autonomy and independence, and the side effects of anti-seizure medicines. However, historical links between epilepsy and psychiatry, alongside persisting stigma, may prevent people with epilepsy from seeking support from mental health services. Furthermore, professionals in both fields may lack the relevant skills and knowledge to support people with epilepsy who have mental health issues. Epilepsy services and mental health services need to work together to provide coordinated care and address the mental health needs of people with epilepsy.

Mental Health Practice. doi: 10.7748/mhp.2024.e1678

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software



Conflict of interest

None declared

Grant M, Collier E (2024) Epilepsy: understanding its emotional and psychological effects and its relationship with mental illness. Mental Health Practice. doi: 10.7748/mhp.2024.e1678

Published online: 13 February 2024

National Institute for Health and Care Excellence (NICE) (2022a) guidelines recommend that people with epilepsy who have mental health issues receive coordinated care based on effective communication and liaison between healthcare professionals, so that they can ‘agree and plan care across services’. The evidence review on which that recommendation is based acknowledged that epilepsy services and mental health services needed to work better together (NICE 2022b).

In the past, this principle of collaborative working appears to have been driven by epilepsy professionals more than by mental health professionals, who may not be aware of the guidance on epilepsy or the mental health factors associated with epilepsy (Reynolds and Trimble 2009). In the authors’ professional experience of nurse education, mental health nurses often lack education on epilepsy. This is illustrated by the fact that the authors of this article gave the first ever presentation on epilepsy and mental health at the 28th Mental Health Nursing Research Conference in 2022 (Collier and Grant 2022).

There is a close relationship between mental illness and epilepsy, with mood states and comorbid mental health issues significantly affecting the quality of life of people with epilepsy (Tittensor et al 2022a). There are also historical links between epilepsy and psychiatry that may affect how people with epilepsy view mental illness and prevent them from seeking support from mental health services.

This article discusses the emotional and psychological effects of epilepsy, the links between epilepsy and mental illness, and the barriers to addressing the mental health needs of people with epilepsy.

Key points

  • Epilepsy is a non-communicable neurological disorder characterised by recurrent seizures caused by abnormal neuronal activity in the brain

  • The emotional and psychological effects of epilepsy may be related to: the permanent threat and unpredictability of seizures; the risk of sudden unexpected death in epilepsy; employment and driving limitations; and medicines

  • A bidirectional relationship between epilepsy and mental illness has been identified, with conditions such as depression and anxiety being common comorbid mental health issues in people with epilepsy

  • It is essential that epilepsy services and mental health services work together for the benefit of people with epilepsy

Overview of epilepsy

Epilepsy is a non-communicable neurological disorder characterised by recurrent seizures that are caused by abnormal neuronal activity in the brain (NICE 2023). It is one of the most common neurological disorders worldwide and a symptom-complex disease with multiple risk factors (Thijs et al 2019). Epilepsy can affect people of all ages and all ethnic, social and geographical backgrounds (Beghi 2020).

Worldwide, more than 70 million people have epilepsy (Thijs et al 2019), while in the UK approximately 633,000 people have the condition – around nine in every 1,000 people (Epilepsy Research Institute 2023, Wigglesworth et al 2023). People with epilepsy are at significant risk of premature death (Public Health England 2018), and there are an estimated 21 epilepsy-related deaths every week in the UK (Epilepsy Research Institute 2023).

The International League Against Epilepsy classifies seizures into focal, generalised or unknown onset (Fisher et al 2017). In generalised seizures, the whole brain is affected, while focal seizures begin in one area of the brain but can then spread to other areas (Fisher et al 2017). Seizures can manifest in a range of ways and may lead to disturbances in consciousness, behaviour, emotion, motor function and/or sensation (Krishnamurthy 2016).

The majority of seizures end spontaneously in less than five minutes (Lado and Moshé 2008). However, in some people, the body’s mechanism for ending seizures fails and a condition known as status epilepticus (SE) can occur. SE, which can happen with any seizure type, is defined as a prolonged seizure lasting five minutes or more, or two or more seizures occurring one after the other without the person recovering in between. It is a medical emergency (NICE 2023).

Benzodiazepines are widely used as first-line rescue medicines for people with epilepsy who are at risk of SE. The use of the benzodiazepine midazolam has been found to be effective in stopping seizures in community settings and can help prevent admission to hospital, enabling people recovering from seizures to remain at home (Shankar et al 2021). Buccal (oromucosal) midazolam is commonly prescribed as a rescue medicine and can be administered in the community by anyone who has received appropriate training, for example family members. The Epilepsy Nurses Association (2023) has produced best practice guidelines on buccal midazolam administration for professional carers.

In addition to rescue medicines, there are multiple types of anti-seizure medicines for ongoing daily seizure management, with the oral route being the mainstay of delivery (Tittensor et al 2022b). Examples of anti-seizure medicines include levetiracetam and topiramate.

It is important to note that the medical diagnosis of epilepsy differs from non-epileptic attack disorder or psychogenic non-epileptic seizures, which patients with mental health issues may experience. Although non-epileptic seizures can resemble epileptic seizures in that they can cause altered movement, sensation or experience, they are caused by a psychological process, not by organic brain disease (Tittensor et al 2022c). This article is concerned with epilepsy seizures only.

Emotional and psychological effects of epilepsy

Despite there being a scientific understanding that epilepsy is a neurological disorder, the experience of epilepsy is individual, complex and can have significant emotional and psychological effects. Seizures are unpredictable and recurrent, which people with epilepsy commonly find challenging emotionally and psychologically (Husain 2015). Contemporary strengths-based approaches, which focus on ability rather than disability, cannot alter the fact that a seizure suddenly interrupts everyday life and that, as a consequence, high proportions of people with epilepsy experience fear, anxious mood and tension (Kwon and Park 2014).

Epilepsy can seriously affect people’s well-being and quality of life, leading to a higher risk of depression and anxiety (Michaelis et al 2020). The prevalence rate of depression among people with epilepsy ranges from 4-43%, compared with 3-13% in the general population, while for anxiety it is 8-50% among people with epilepsy and 12-22% in the general population (NICE 2022b).

In addition to the emotionally challenging life events that people generally experience, such as bereavement, financial concerns and relationship or family issues, people with epilepsy often experience further challenges, for example in accessing education or employment and in enjoying a social life or leisure pursuits. These challenges can leave them feeling socially isolated (Tittensor et al 2022a). According to the charity Young Epilepsy (2023), children with epilepsy are four times more likely to develop mental health issues than other young people because of the physical, social and emotional issues brought about by their condition. These issues can significantly affect their daily lives and result in them feeling anxious, isolated and overwhelmed (Young Epilepsy 2023).

People with epilepsy do not want to be seen as being different (Kilinç and Campbell 2009, Collier and Grant 2021), so the barriers to ‘normal life’ and the stigma that these individuals often experience can be frustrating and upsetting (Nightingale 2012, Holmes et al 2019). Strong feelings of being marginalised and excluded are evident among this group in the literature (Mlinar et al 2016, Tedrus et al 2018, Collard and Ellis-Hill 2019, Collier and Grant 2021). People with epilepsy sometimes discuss finding it challenging to accept their diagnosis and experiencing grief for their former life (Keddie et al 2016).

Physical appearance and behaviours during a seizure

When someone has a seizure, they are likely to look different from normal, for example they may salivate, experience incontinence and their face and limbs may contort. People having frontal lobe seizures may also display sexual disinhibition. These physical and behavioural outcomes can lead to retrospective feelings of embarrassment, shame and isolation (Hingray et al 2019), while anticipating seizures can also reduce people’s confidence and cause constant fear. Beletsky and Mirsattari (2012) suggested there are two main types of fear among people with epilepsy: fear of seizures and fear of the consequences of seizures.

Permanent threat and unpredictability

For many people with epilepsy, seizures can occur at any time and without warning. Living with that constant threat of unpredictable loss of control and fear of injury can cause anxiety and depression (Husain 2015). For example, people do not know whether they will be able to complete a full day of work, manage to do the shopping for the family, watch a film from beginning to end or read their child a bedtime story from cover to cover. Furthermore, ordinary domestic activities such as bathing and cooking present additional risks (Shorvon 2009, Collier and Grant 2021). These permanent threats and their unpredictability can create a significant psychological burden, with many people with epilepsy experiencing isolation and loneliness due to the fear of a seizure occurring (Epilepsy Society 2022).

Risk of sudden unexpected death in epilepsy

Another aspect of epilepsy that can make people feel different and fearful is the risk of sudden unexpected death in epilepsy (SUDEP). SUDEP occurs when a person with epilepsy dies suddenly and prematurely and no reason for the death is found. It can happen in people who were previously fit and well apart from their epilepsy. SUDEP occurs in approximately one in every 1,000 people with epilepsy each year in the UK (SUDEP Action 2023). Risk factors for SUDEP include receiving treatment for anxiety and depression, polypharmacy and alcohol issues (Brown et al 2013). A Swedish study found that those at greatest risk of SUDEP were people with generalised tonic-clonic seizures who slept alone (Sveinsson et al 2020). Living with the possibility of sudden death can cause fear, anxiety and worry, high levels of emotional stress, and a constant sense of unease (Kroner et al 2014). It can also prompt people to adopt a fatalistic attitude towards risks as a coping strategy (Keddie et al 2016, Collier and Grant 2021).

Employment limitations

Finding and staying in employment can be challenging for people with epilepsy due to several interacting factors, including low self-esteem, low self-efficacy and restrictions to accessing high-risk professional activities, for example roles that involve driving or working at heights (Smeets et al 2007). Furthermore, suboptimal seizure management can be associated with significant cognitive decline (Drane 2014), causing people to experience concentration issues and memory loss. Therefore, people’s opportunities to work to their full potential may be limited, which can adversely affect their self-esteem and independence (Tittensor et al 2022c).

Driving limitations

People with epilepsy who experience epileptic seizures or blackouts must inform the UK Driver and Vehicle Licensing Agency and must not drive (Gov.uk 2023). Others may be allowed to drive in certain circumstances, for example if their seizures only occur during sleep and/or never affect consciousness. People who experience seizures that affect consciousness must have gone at least 12 months without having a seizure to be eligible to apply or reapply for a driving licence (Gov.uk 2023).

Being able to drive can be crucial for maintaining independence, and losing that ability can provoke sadness and anger (Layne Moore et al 2021). People with epilepsy may not be able to parent their children as independently as they would like to, for example because they cannot drive their children to social or educational events. The loss of a driving licence for a potentially long period of time can greatly affect people’s mood, self-esteem and overall quality of life (Polychronopoulos et al 2006), and can lead to anxiety about loss of employment. This can incite patients with active epilepsy to ignore driving restrictions (Willems et al 2019).


Medicines prescribed for epilepsy can pose additional challenges for people’s mental health. For example, common side effects of levetiracetam include depression and altered mood, while those of topiramate include anxiety and depression (Joint Formulary Committee 2023). This can complicate the diagnosis of mental health issues, since it may be unclear whether symptoms are caused by these medicines. Anti-seizure medicines can also have side effects such as psychosis and suicidal ideation (Kanth et al 2021). Furthermore, anti-seizure medicines are a source of anxiety for pregnant women, since these medicines can have adverse effects on the fetus (Sabers 2013, Al Wattar et al 2015).

Links between epilepsy and mental illness

Bidirectional relationship

Depression and anxiety are common comorbid mental health issues in people with epilepsy, with stigma related to epilepsy being a contributing factor (Reisinger and Dilorio 2009). However, organic lesions in epilepsy can also cause depression (Kuroda 2020), and psychosis can occur after a single seizure or a cluster of seizures, with patients reporting delusions, paranoid ideation, hallucinations and aggression (Sperling 2013). Distinguishing between the neurological disorder epilepsy and any diagnosed mental health issues is crucial, since a misdiagnosis will lead to suboptimal treatment.

Depression may contribute to the development of epileptic seizures, and people with epilepsy who have low mood are more likely to have seizures (Fiest et al 2013). This bidirectional relationship between epilepsy and mental illness results in highly complex needs and the mental health implications go far beyond the anxiety and fears that people with epilepsy experience. Suicide rates are higher among people with epilepsy than in the general population (Abraham et al 2019), with the additional risk factor that side effects of anti-seizure medicines can include suicidal thoughts (Kanth et al 2021).

Historical legacy

In the UK, epilepsy services are separate from mental health services, and people with epilepsy may be well aware of the distinction between epilepsy and mental illness. However, the historical links between epilepsy and psychiatry may unknowingly prevent people with epilepsy from engaging with mental health services.

There have been centuries of misconceptions regarding epilepsy (Reynolds and Trimble 2009), which was not understood as a neurological disorder until the 1850s (Berrios 1984). The ‘cause of insanity’ given for the first patient ever admitted to the South Yorkshire Asylum in 1872 was epilepsy (Sheffield City Council 2022). Between 1872 and 1910, epilepsy represented 7% of the reasons for admission to that asylum (357 admissions out of the 5,015 admissions for which a reason had been recorded) (Sheffield City Council 2022). In 1860, epilepsy was the most common physical cause of admission to Rainhill Asylum (Nolan 1993). Today, in some countries of sub-Saharan Africa, people with epilepsy are still seen in mental health services (Kirabira et al 2020).

Persisting stigma

There do not appear to be any statistics on how many people with epilepsy access mental health services. In the second author’s (EC) experience, people with epilepsy do not appear to be present in any substantial numbers in mental health settings. This leads the authors to suggest that few people with epilepsy seek support from mental health services, which is unfortunate since these services use some models of mental illness that could be beneficial for people with epilepsy (Reynolds and Trimble 2009).

The authors suggest that a historical legacy of ‘madness’ and stigma remains attached to epilepsy despite some progress. People with epilepsy may shun mental health services to avoid being diagnosed with a mental health issue in addition to their epilepsy, or to avoid the double stigma associated with both conditions (Mula and Kaufman 2020).

Mula and Kaufman (2020) noted that in the literature there has been little examination of double stigma in the context of epilepsy and mental illness. They criticised a World Health Organization Regional Office for Europe (2018) document for ignoring double stigma in relation to epilepsy and mental illness, despite its serious implications for people’s lives. Stigma and the internalisation of a problematic historical legacy may be preventing people with epilepsy from accessing potentially useful mental healthcare and support. Therefore, it is important to understand the stigma that people with epilepsy may experience (Holmes et al 2019).

Addressing the mental health needs of people with epilepsy

Although epilepsy specialist nurses aim to provide holistic care to patients (Hopkins and Irvine 2012), previously there was a perception that epilepsy care followed a medical model in which the psychosocial effects of the condition were not sufficiently recognised (Lewis et al 2010). However, the role of epilepsy specialist nurse has evolved and epilepsy specialist nurses have become valued for their specialist knowledge, leadership skills and ability to cross boundaries and link up services (Epilepsy Action 2019). NICE (2022a) guidelines recommend that epilepsy specialist nurses discuss emotional and psychological well-being – including depression, anxiety and low mood – with patients during consultations.

In its epilepsy toolkit, NHS RightCare (2020) reported that people who have epilepsy are potentially less likely than people who do not have epilepsy to be referred to improving access to psychological therapies (IAPT) services – now known as NHS Talking Therapies – when they present with symptoms of depression and anxiety, because IAPT services would find them complex to treat. Furthermore, the NHS RightCare (2020) toolkit states that all people with comorbid epilepsy and mental health issues should be identified promptly so that they can access appropriate mental health and well-being support.

Epilepsy professionals generally recognise that people with epilepsy often experience mental health issues, but do not necessarily feel equipped with the appropriate skills to intervene. Similarly, mental health professionals may feel they lack the necessary knowledge to support people with epilepsy. This compounds the risk of people with epilepsy not receiving potentially effective support from mental health services (NHS RightCare 2020, NICE 2022a).

Training for epilepsy professionals on the symptoms of mental health issues and training for mental health professionals on epilepsy would improve the support that can be offered (Gandy et al 2021). Universities should incorporate information about epilepsy into mental health nurse education programmes. Additionally, further integrated care models are necessary to enable effective care coordination (Gandy et al 2021).


Epilepsy can have significant emotional and psychological effects, and people with the condition are at high risk of developing mental health issues. Epilepsy professionals generally recognise that people with epilepsy often experience mental health issues, but might not feel equipped with the appropriate knowledge and skills to intervene. Similarly, mental health professionals may feel that they lack adequate knowledge to support people with epilepsy and mental health issues, meaning that these individuals might not receive the care they require.

Distinguishing between epilepsy and any comorbid mental health issues is crucial, since an inaccurate diagnosis will lead to inappropriate treatment. It is also important that epilepsy services and mental health services work together for the benefit of people with epilepsy.


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