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Individuals also have to adjust to long-term drug treatment and accompanying side effects
such as weight gain, acne, unwanted facial hair, irritability and cognitive disturbances. These
aspects may become more stressful at certain times of development, with adolescence being
a vulnerable period. Many with poorly controlled seizures have to endure successive
treatment failures, and the accompanying emotional highs and lows, as hopes are raised with
the introduction of a new drug only to be dashed when seizures return. Potentially as
damaging psychologically is the failure of surgical treatment, particularly when this follows
several years of freedom from seizures.

Anxiety and depression are over-represented in individuals with epilepsy but are under-
treated11,14,15 (see also Chapter 16). A survey of professionals identified managing the
psychological and emotional effects of epilepsy as one of the greatest challenges16. NICE
guidelines recommend CBT to treat depression and anxiety and there are studies that support
its value in epilepsy17,18. In the UK the Improving Access to Psychological Therapies
programme has resulted in an expansion in the numbers of CBT therapists available. These
can be accessed via the GP and other health professionals, with most services accepting self-
referrals.

Recommendations

Greater awareness is needed of the wider impact of epilepsy. Improved training of health
professionals is indicated, as are resources for public awareness campaigns. Emotional
adjustment difficulties are more likely to develop in the context of incomplete and inaccurate
information. People need pertinent, individually tailored information about seizures,
treatment and lifestyle. Input is needed not only at the time of diagnosis. Epilepsy is a
complex disorder and the need and nature of support will change over time.

References

1. QUINTAS R, RAGGI A, GIOVANNETTI AM et al (2012) Psychosocial difficulties in people with epilepsy: A
systematic review from 2005 until 2010. Epilepsy Behav 25, 60-67.

2. CAMFIELD PR, CAMFIELD CS (2014) What happens to children with epilepsy when they become adults. Pediatr
Neurol 51,17-23.

3. SILLANPAA M, CROSS H (2009) The psychosocial impact of epilepsy in childhood. Epilepsy Behav 15, S5-S10.
4. SMEETS V, VAN LIEROP B, VANHOUTVIN J, ALDENKAMP A, NIJHUIS F (2007) Epilepsy and

employment: literature review. Epilepsy Behav 10, 354-362.
5. THORBECKE R, MAY TW, KOCH-STOECKER S, EBNER A, BIEN CG, SPECHT U (2014) Effects of an

inpatient rehabilitation program after temporal lobe surgery and other factors on employment two years after
epilepsy surgery. Epilepsia 55, 725-733.
6. RODENBURG R, MEIJER AM, DEKOVIC M, ALDENKAMP A (2005) Family factors and psychopathology in
children with epilepsy: A literature review. Epilepsy Behav 6, 488-503.
7. PENNEL PB, THOMPSON PJ (2009) Gender-specific psychosocial impact of living with epilepsy. Epilepsy Behav
15, S20-S25.
8. KERR C, NIXON A, ANGALAKUDITI M (2011) The impact of epilepsy on children’s and adult patients’ lives:
Development of a conceptual model from qualitative literature. Seizure 20, 764-774.
9. LU B, ELLIOTT, JO (2012) Beyond seizures and medications: Normal activity limitations, social support and
mental health in epilepsy. Epilepsia 53, e25-e28.
10. AUSTIN JK, SHAFER PO, DEERING JB (2002) Epilepsy familiarity, knowledge and perceptions of stigma:
report from a survey of adolescents in the general population. Epilepsy Behav 3, 368-375.
11. KIMISKIDIS KK, VALETA T (2012) Epilepsy and anxiety: epidemiology, classification, aetiology and treatment.
Epileptic Disord 14, 248-256.
12 THOMPSON P (2014) The importance of theory of mind in epilepsy. Epilepsy Behav 39, 143-144.
13. KOORENHOF L, BAXENDALE S, SMITH N, THOMPSON P (2012) Memory rehabilitation and brain training
for surgical temporal lobe epilepsy patients: a preliminary report. Seizure 21, 178-182.
14. RAI D, KERR MP, McMANUS S, JORDANOVA V, LEWIS G, BRUGHA TS (2012) Epilepsy and psychiatric
co-morbidity: A nationally representative population based study. Epilepsia 53, 1095-1103.
15. KWON OY, PARK SP (2014) Depression and anxiety in people with epilepsy. J Clin Neurol 10, 175-188.
16. CLARK N, STOLL S, YOUATT E, SWEETMAN M, DERRY R, GORELICK A (2010). Fostering epilepsy self-
management: The perspectives of professionals. Epilepsy Behav 19, 255-263.
17. MACRODIMITRIS S, WERSHLER J, HATFIELD M et al (2011) Group cognitive-behavioural therapy for