Strange episodes during sleep - epilepsy or parasomnia? / Underlige episoder under søvn ­ epilepsi eller parasomni?

In some forms of epilepsy, the seizures occur almost exclusively during sleep. This is particularly the case with hypermotor frontal lobe seizures. Clinically it can be difficult to distinguish such seizures from parasomnias and psychogenic non-epileptic seizures. This clinical review article aims to highlight the importance of making the correct diagnosis, as these conditions require completely different treatment.

Temporal lobe epilepsy. / Temporallappsepilepsi.

The temporal lobes are the part of the brain most likely to give rise to epileptic seizures. Seizures originating in the temporal lobes vary greatly in character; some may be so unusual that they are not even recognised as epileptic. For patients who have been diagnosed with hippocampal sclerosis and whose seizures cannot be controlled with drugs, epilepsy surgery may be a good treatment option. In this brief clinical review, we summarise the key features of epilepsy and highlight the importance of accurate and early diagnosis for achieving good clinical outcomes.

People with epilepsy still feel stigmatized.

OBJECTIVES: Those affected with epilepsy have long been subject to stigmatization. This may have manifold negative effects, for example social isolation, low self-esteem, reduced quality of life and worsening of seizures. In Norway educational programs have been arranged at the National Centre for Epilepsy, aiming at reducing stigma and shame associated with epilepsy, and thereby increase the quality of life for those affected and their families. Thus, we wanted to explore the extent of self-reported perceived stigma and experienced discrimination in a Norwegian cohort with epilepsy. MATERIALS AND METHODS: We conducted a web-based questionnaire survey in Norway. Participants were asked to provide background and epilepsy-related information. In addition, they were encouraged to answer questions regarding felt stigmatization in different situations and to rate stigma according to the Jacoby stigma scale. RESULTS: Of 1182 respondents, 56% reported to have felt being stigmatized, and 35% reported to have experienced discrimination solely on the ground of the disease. 70% of respondents reported at least one type of perceived or experienced stigma. After controlling for gender, age, perceived depression and seizure freedom, reports of experienced stigmatization was a statistically significant independent predictor for reduced quality of life. CONCLUSIONS: A considerable proportion of people with epilepsy in Norway feel stigmatized and/or subject to discrimination, which negatively affects their quality of life.

Clinical experience combined with therapeutic drug monitoring of lacosamide.

OBJECTIVE: Lacosamide (LCM) is an antiepileptic drug (AED) with insufficient clinical experience in patients with intellectual disability (ID). They often have more severe epilepsy with comorbidities. The objective was to evaluate the efficacy and tolerability of lacosamide (LCM) in patients with refractory epilepsy with and without ID in a real-life setting, taking drug monitoring (TDM) data into account therapeutic. METHODS: Retrospectively, we identified 344 patients using LCM from the TDM service covering the majority of the country, at the National Center for Epilepsy in Norway (2013-2018). Clinical and TDM data were available for 132 patients. RESULTS: Forty-four of the 132 patients (33%) had ID. The retention rate was significantly higher in the ID vs the non-ID group after 1 year (84% vs 68%, P < .05). By combining clinical and TDM data, we demonstrated that 37/38 responding patients had serum concentrations above the lower limit of the reference range (>10 µmol/L), and 16/17 with lower concentrations were non-responders. Mean serum concentration/dose ratios were similar in both groups, 0.06 and 0.07 µmol/L/mg. There were no significant differences regarding efficacy and tolerability. The risk of LCM withdrawal was significantly higher when LCM was added to sodium channel blockers, even if the latter was discontinued. SIGNIFICANCE: Lacosamide was generally well tolerated in patients with drug-resistant epilepsy, where one third had ID, and in these patients the retention rate was higher. The combination of clinical and TDM data could possibly facilitate LCM therapy in these vulnerable patients.

Patient satisfaction with information provided by epilepsy specialist nurses: Results of an online survey.

The aim of this study was to investigate the perspective of Norwegian patients with epilepsy regarding the information that they have received about epilepsy-related issues and to determine whether there was a difference in information received between those who had been followed up by an epilepsy specialist nurse (ESN) and those who had not. Further, were there differences regarding satisfaction with the information between the two groups? We conducted an online survey in close collaboration with the Norwegian Epilepsy Association. A total of 1859 respondents (1182 patients with epilepsy and 677 carers for patients with epilepsy) completed a web-based questionnaire. They were asked about epilepsy-related issues on which they had received information, the extent to which they were satisfied with this information, and whether they were being followed up by an ESN or not. Significantly more patients followed up by an ESN had received information about the epilepsy diagnosis, antiseizure drugs (ASDs), routine use of ASD, and risk of seizure-related injuries as compared to those not followed up by an ESN. In addition, patients followed by an ESN were more likely to be satisfied with the information they received. Just above or under half of the respondents had received or were satisfied with information about depression, anxiety, premature death, and sexual wellbeing. Our results indicate that follow-up by ESNs results in improvements in the information provided to patients with epilepsy; ESNs should be an integral part of comprehensive epilepsy service.

How often do doctors discuss drug withdrawal with their seizure-free patients with epilepsy?

Among patients with epilepsy, almost 70% become seizure-free with the current antiseizure drugs (ASDs) within 20 years following seizure onset. Of those who have been seizure-free for many years, around 70% remain seizure-free after withdrawal of ASDs. The purpose of this study was to determine the extent to which seizure-free patients with epilepsy in Norway discuss drug discontinuation with their physician. An online questionnaire was used; among the respondents were 186 adult patients who had been seizure-free for at least five years and were still using ASDs. Of these, 60 patients (32%) reported that they had discussed the question of drug withdrawal with their treating physician. Those patients who reported being involved in treatment decisions were more likely to have discussed ASD withdrawal. In conclusion, it is our opinion that discontinuation of drug treatment in patients with long-term seizure freedom is discussed far too seldom and that many patients may be living with an unnecessary drug burden.

Nonadherence to treatment regimens in epilepsy from the patient's perspective and predisposing factors: Differences between intentional and unintentional lack of adherence.

Nonadherence to recommended antiepileptic drug (AED) treatment regimens can result in seizure relapse with increased health risks. Nonadherence can be unintentional (eg, patients forget to take a dose), or intentional, when patients consciously decide not to follow the agreed AED treatment regimen. We aimed to determine the extent to which Norwegian patients with epilepsy (PWEs) report taking their AED differently from prescribed, either intentionally or unintentionally, and to identify risk factors for either form of nonadherence. Of 1182 PWEs who completed an online survey presented on the website of the Norwegian Epilepsy Association, 40% reported that they sometimes or often forget to take their AED as scheduled, and about 30% reported that they consciously chose not to follow the AED treatment plan agreed upon with their physician. Independent variables significantly associated with unintentional nonadherence include the following: feeling depressed, being younger than the mean age, and having memory problems. Independent factors significantly associated with intentional nonadherence include the following: feeling depressed, male gender, and perceptions of stigmatization. To improve the treatment of PWEs, it is important to distinguish between intentional and unintentional nonadherence to AED treatment regimens, as different risk factors and reasons associated with nonadherence to AED treatment regimens might require different interventions.

Sexual function in people with epilepsy: Similarities and differences with the general population.

OBJECTIVE: The potential impact of epilepsy on sexual function is important for patient welfare, but often neglected. This study explored the occurrences of different sexual problems in patients with both well-controlled and mostly refractory epilepsy, and compared these with equivalent information from the general population. METHODS: Between 2015 and 2017, a total of 221 adult inpatients and outpatients, mostly with intractable epilepsy, at the National Centre for Epilepsy in Norway, and 78 outpatients with well-controlled epilepsy at Lillehammer hospital participated in a questionnaire survey on sexual function. Information on the individual patient's epilepsy was collected. The results were compared with equivalent data on sexual function from 1671 adult Norwegians in the general population. RESULTS: Patients with epilepsy reported a significantly higher frequency of problems with orgasm, dyspareunia, erectile dysfunction, and feelings of sexual deviance. However, reduced sexual desire, premature ejaculation/climax, and vaginal dryness occurred at similar frequencies in the general population. After controlling for gender, we found no significant association between sexual problems and seizure control or use of enzyme-inducing antiepileptic drugs. In both genders, feelings of sexual deviance were associated with lower quality of life. Fewer patients with epilepsy were satisfied with their sex lives. The perception of sex as an important part of daily life was similar among women with epilepsy and women from the general population, whereas significantly fewer men with epilepsy than men in the general population reported that sex was an important part of their daily lives. Women with mostly refractory epilepsy reported asking for help with their sexual problems significantly more often than women in the other groups. SIGNIFICANCE: Some sexual problems occur significantly more often in patients with epilepsy than in the general population and feelings of sexual deviancy occur more frequently. No epilepsy-related factors could be identified as specific predictors.

Pharmacokinetic interaction between modified Atkins diet and antiepileptic drugs in adults with drug-resistant epilepsy.

OBJECTIVE: The aim was to examine the influence of modified Atkins diet on serum concentration of antiepileptic drugs (AEDs). METHODS: Prospective data from 63 adult patients with either focal or generalized drug-resistant epilepsy recruited to 12-week dietary treatment as add-on to AEDs are analyzed. AED serum concentrations, ketones, glucose, and hemoglobin A1c were measured before and after the dietary intervention. Paired t test was used and Spearman correlation coefficient, r, was estimated. RESULTS: Mean age was 37 years (range 16-65 years). Mean serum concentrations of carbamazepine, clobazam, and valproate were significantly reduced after 4 and 12 weeks of the diet period (<.001 ≤ P ≤ .02). Levels of lacosamide, lamotrigine, and topiramate were less reduced (.02 ≤ P ≤ .08), whereas the serum concentrations of oxcarbazepine, zonisamide, and levetiracetam were unchanged (.06 ≤ P ≤ .90). The largest reduction in serum concentration was found for clobazam: mean reduction after 12 weeks was 1.5 µmol/L (34%). Percent change in serum concentration after 4 and 12 weeks of all drugs analyzed was -10.5% (95% confidence interval [CI] -14.1 to -6.8; n = 60; P < .001) and -13.5% (95% CI -18.8 to -8.3; n = 56; P < .001), respectively. Percent change in serum concentration of AEDs was not significantly correlated to percent change in seizure frequency after 12 weeks of dietary treatment (r = .14, P = .33, n = 53) but negatively correlated to urine ketosis (r = -.43; P = .003; n = 46). SIGNIFICANCE: A reduction in AED serum concentrations may counteract a seizure-reducing effect of the diet, and in patients without such an effect, it may cause seizure aggravation. Thus, we recommend that clinicians who are treating patients with ketogenic diets monitor serum concentrations of the concomitant AEDs.

Challenges in epilepsy-The perspective of Norwegian epilepsy patients.

OBJECTIVES: For most people with epilepsy (PWE), problems that are not directly related to seizures may constitute major challenges in everyday life. The purpose of this study was to determine the extent of these challenges and any risk factors for their occurrence among PWE in Norway, based on the patients' own perspective. MATERIALS AND METHODS: We used a web-based survey to ask PWE visiting the homepage of the Norwegian Epilepsy Association about different everyday challenges. A link to the survey was accessible via the members' homepage for a 4-month period during 2017. RESULTS: One thousand one hundred eighty-two PWE responded to the questionnaire. Although more than 40% of the cohort reported that they had been seizure free for at least 1 year, the majority reported that tiredness (71%), memory problems (70%), concentration problems (68%), headache or vertigo (51%), and feeling depressed (59%) continued to represent challenges. In addition, fear of being alone, sexual problems or difficulties in social settings were reported by about one-third of the patients. Reporting having these challenges was significantly associated with female gender, polytherapy, experiencing seizures during the previous 12 months and feeling blue or depressed. CONCLUSIONS: The results of this study, reflecting a self-selected Norwegian population, provide insights into the challenges not directly associated with seizures that impact on the quality of life of PWE. The impacts of such challenges may be underestimated as components of the entire burden of epilepsy.

Psychosocial complications in juvenile myoclonic epilepsy.

Juvenile myoclonic epilepsy (JME) constitutes about 10% of all epilepsies. Because of executive dysfunction, people with JME may be prone to impulsivity and risk-taking behavior. Our aim was to investigate whether psychosocial issues associated with impulsivity are more prominent in people with JME than in those with other types of genetic generalized epilepsy (GGE). Patients with GGE were recruited retrospectively through the Drammen Hospital records in Buskerud County, Norway, 1999-2013. They were invited to a semi-structured interview, either at the hospital or at home. Ninety-two patients with JME and 45 with other types of GGE were interviewed. Variables were evaluated in terms of their association with JME versus other GGE diagnosis using a logistic regression model. Juvenile myoclonic epilepsy was associated with use of illicit recreational drugs and police charges, although with borderline significance (odds ratio [OR] 3.4, p = 0.087 and OR 4.2, p = 0.095); JME was also associated with being examined for attention-deficit hyperactivity disorder (ADHD) in females (OR 15.5, p = 0.015), a biological parent with challenges like addiction or violent behavior (OR 3.5, p = 0.032), and use of levetiracetam (OR 5.1, p = 0.014). After controlling for group differences, we found psychosocial complications to be associated with JME, potentially influencing the lives of the individuals and their families to a greater extent than the seizures per se. Thus, JME should be considered a disorder of the brain in a broader sense than a condition with seizures only.

Effect of modified Atkins diet in adults with drug-resistant focal epilepsy: A randomized clinical trial.

OBJECTIVE: Ketogenic diets reduce seizures in children with drug-resistant epilepsy. Whether adults benefit from similar treatment has not been clarified. We therefore examined the efficacy of the modified Atkins diet in adults with drug-resistant focal epilepsy. METHODS: We performed a randomized clinical trial (RCT) with patients >16 years who had at least 3 seizures per month despite having tried at least 3 antiepileptic drugs. They were randomized to either 12 weeks on the modified Atkins diet (diet group) or habitual diet (control group). Primary endpoint was a change in seizure frequency from baseline to the intervention period, comparing those on diet with controls. RESULTS: We assigned 37 patients to the diet group and 38 to the control group. Nine of the patients in the diet group and 4 controls were excluded. Of those who completed the dietary intervention (n = 24), median seizure change was -1.0 (interquartile range [IQR] -13.7-8.8), while in the control group (n = 32) the median change was 4.5 (IQR -4.8-33.5). The median difference between the groups was -7.0 (95% confidence interval [CI] -37.0-3.0; P = .21). In the intention-to-treat analysis, the relative risk (RR) for achieving >50% seizure reduction was 1.8 (95% CI 0.3-10.2; P = .65), while for achieving >25% seizure reduction RR was 2.43 (95% CI 0.94-6.28; P = .06). We observed no serious adverse events. SIGNIFICANCE: In this RCT investigating the effect of an adjunctive modified Atkins diet on seizure frequency in adults with difficult-to-treat focal epilepsy, we found a significant reduction in seizure frequency in the diet group compared to the controls, but only for moderate benefit (>25% seizure reduction) among those who completed the intervention. However, seizure response varied considerably between individuals, perhaps negatively influenced by a drop in serum concentrations of antiepileptic drugs.

People with epilepsy and their relatives want more information about risks of injuries and premature death.

For most people with chronic diseases such as epilepsy, thorough knowledge of the disease is important in order to reduce feelings of insecurity and to enable better management of everyday life. Whether and when to inform patients and their families about all the risks associated with epilepsy is a matter of controversy. Using a web-based survey, patients with epilepsy (PWE) (n=1183) and carers, family members, or guardians of PWE, who could either answer on behalf of the patients (CBP) (n=676) or on their own behalf (CAR) (n=231) were asked whether they wanted information about the risk of epilepsy-related injuries and premature death and also whether they had received such information. Ninety percent or more of PWE, CBP, and CAR reported that they wanted such information, and 50% of CAR, 81% of CBP, and 70% of PWE had received some information about seizure-related injuries. Regarding risk of unexpected death, 31% of PWE, 35% of CBP, and 28% of CAR had received information on this issue. Those with tonic-clonic seizures were most eager to obtain information on these matters, and those best informed about epilepsy-related risks were males and the youngest part of the cohort. The wish for more information or the likelihood of having already received information was independent of the individual's seizure situation. This study demonstrates that there is a considerable gap between what the patients want regarding information and what they are actually given by healthcare providers.

Epilepsy and anxiety. / Epilepsi og angst.

Up to one-quarter of people with epilepsy have mental health disorders in addition to seizures. Depression has received the most attention although anxiety disorders occur just as frequently, if not more so. Even though psychiatric symptoms can reduce quality of life more than epileptic seizures, they continue to go unnoticed and untreated.

The hanging of Derek Bentley, a 19-year-old boy with epilepsy.

Derek Bentley (1933-1953) was sentenced to death by hanging at the age of 19. He was convicted as a party to murder, and he died in Wandsworth Prison in London. After the police had reached the crime scene, he ostensibly shouted to his 16-year-old friend Christopher (Chris) Craig the ambiguous phrase, "Let him have it, Chris!" Chris fired shots at two policemen, wounding one and killing another. Derek Bentley had epilepsy and a mental age of about 11, and he could neither read nor write. In 1993, 40years after his death, he received a posthumous pardon from the British government. Five years later, his case was finally quashed.

Traditional folk beliefs on epilepsy in Norway and Sweden.

In Norway and Sweden, epilepsy has for many centuries been considered a strange and mysterious disease. The explanations of its causes have been many and imaginative. One being that epilepsy was caused by the hidden people inhabiting the woods and the mountains. To avoid the disease, these hidden people should not be annoyed. One commonly used treatment principle was to try to place the disease back to the ground, or passing the diseased through a hole or an opening in the nature. Fresh blood from criminals was also considered to have strong antiepileptic properties. In the Scandinavian countries, some of these folk beliefs have been very tenacious.