Gender-specific psychosocial impact of living with epilepsy Page B. Pennell a, * , Pamela Thompson b,1 a Department of Neurology, Emory University School of Medicine, 101 Woodruff Circle, Suite 6000, Atlanta, GA 30322, USA b Department of Clinical and Experimental Epilepsy, Institute of Neurology, University College London, Queen Square, London WC1N 3BG, UK article info Article history: Received 4 March 2009 Accepted 5 March 2009 Available online 17 April 2009 Keywords: Epilepsy Gender Psychosocial Sexual function Hormone Catamenial Pregnancy abstract Although many psychosocial issues affect all people living with epilepsy, certain issues either are specific to one gender or have a different prevalence or significance between men and women with epilepsy. Most studies suggest that the incidence of epilepsy is slightly higher in males with epilepsy. Sexual dys- function is common among men and women with epilepsy and has been related to epilepsy type and treatment. Women living with epilepsy are often prone to increased seizure frequency at certain phases of their menstrual cycles. Hormone replacement therapy in postmenopausal women may worsen sei- zures. Treatment during pregnancy is often a precarious balancing act between the teratogenic risks of AEDs and the maintenance of maternal seizure control. However, pregnancy registries and other prospec- tive studies have given us invaluable information on how to optimize treatment regimens as well as information about safety of breastfeeding. These gender-specific factors should be a key consideration when counseling and treating patients with epilepsy. Ó 2009 Elsevier Inc. All rights reserved. 1. Incidence and prevalence of epilepsy by gender Most studies report slightly higher incidence and prevalence rates for epilepsy in males [1], although not all reports are consis- tent. One study in a Texas health maintenance organization popu- lation, reported a striking gender difference with an overall incidence of epilepsy of 41.9 per 100,000 for men versus 20.7 per 100,000 for women [2]. However, two studies showed that self-re- ported epilepsy prevalence was lower in men than in women [3,4]. Two childhood studies found slightly higher rates in boys than girls [5,6]. A similar pattern was seen in Rochester for 1940–1970 [7]. A population-based study from Denmark revealed the age-spe- cific incidence and prevalence rates were slightly higher in men, with the exception of the 10–25 years age band [8]. The higher incidence rates in males occurred with localization-related epi- lepsy in particular, but for primary generalized epilepsy, the inci- dence rate was twofold higher for women aged 12–20 years. Further studies are needed to clarify the role of gender; multifacto- rial influences are likely, including age, type of epilepsy syndrome, and geographic or racial factors. 2. Epilepsy–antiepileptic drugs–sex steroid hormones axis The interaction among the sex steroid hormonal axis, epilepsy, and the medications used to treat epilepsy is complex, with tridi- rectional interactions which affect both men and women in various ways [9,10]. Both interictal and ictal discharges have been pro- posed as altering the sex steroid hormonal axis at the level of the hypothalamus and the pituitary [10]. Sex steroid hormones and their metabolites can affect seizure frequency and is especially notable with the cyclic fluctuations in estradiol and progesterone that occur monthly in women of repro- ductive age, resulting in a catamenial pattern. Although approxi- mately one-third of women with localization-related epilepsy have a catamenial pattern [11–12], this cyclic pattern is often underrecognized or underacknowledged by physicians treating women with epilepsy. Often the woman is the one to bring it up to her physician, but still too often her concerns are met by indifference or even doubt [14]. Perhaps one of the reasons is the perceived lack of treatment options. However, in addition to stan- dard AED regimens, treatment strategies can include increasing the AED dose around the time of increased seizure susceptibility, avoiding the cyclic variation in endogenous hormones by a contin- uous oral contraceptive pill, or even supplemental progesterone given during the luteal phase [15,16]. A double-blind, randomized, placebo-controlled trial of cyclic supplemental progesterone is currently underway, and if the results are positive, it may provide the evidence needed for physicians to incorporate consideration of seizure patterns into their history-taking and treatment decisions for women with epilepsy. Alterations in seizure patterns can occur with other major hormonal shifts, such as during puberty, pregnancy, and perimen- opause. Some epilepsy syndromes are first expressed or worsen during puberty [9]. Small survey studies have reported increased seizures during the perimenopausal transition, but improved 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.03.022 * Corresponding author. Fax: +1 404 712 8576. E-mail addresses: page.pennell@emory.edu (P.B. Pennell), pam.thompson@ epilepsynse.org.uk (P. Thompson). 1 Fax: +1 44 1494 876294. Epilepsy & Behavior 15 (2009) S20–S25 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh