Roland D Thijs

Stichting Epilepsie Instellingen Nederland | SEIN · Neurology

Background and purpose Centers for training in autonomic nervous system (ANS) disorders are not widely available and the recent coronavirus 2019 pandemic temporarily reduced training opportunities in autonomic medicine across European countries. Here we evaluated the current state of education, clinical skills and postgraduate educational preferenc...

People with epilepsy are at risk of premature death, of which sudden unexpected death in epilepsy (SUDEP), sudden cardiac death (SCD) and sudden arrhythmic death syndrome (SADS) are the primary, partly overlapping, clinical scenarios. We discuss the epidemiologies, risk factors and pathophysiological mechanisms for these sudden death events. We rev...

Importance How epilepsy may promote cardiovascular disease remains poorly understood. Objective To estimate the odds of new-onset cardiovascular events (CVEs) over 6 years in older people with vs without epilepsy, exploring how enzyme-inducing antiseizure medications (EIASMs) and traditional cardiovascular risk factors mediate these odds. Design,...

Purpose We studied the relative contributions of total peripheral resistance (TPR), stroke volume (SV) and heart rate (HR) to low blood pressure in classical orthostatic hypotension (cOH) on group and individual levels. Methods We retrospectively analyzed tilt test records from cOH patients and age/sex-matched controls. We quantified relative effe...

Introduction: Orthostatic hypotension is common in people with Parkinson’s disease due to autonomic dysfunction and medication use, and can have a significant negative impact on quality of life. Pharmacological treatment is often complicated due to complex blood pressure regulation problems. This case report presents a patient whose symptoms of ort...

Background Neurobehavioural comorbidities have a detrimental effect on the quality of life of people with epilepsy, yet tracking their impact is challenging as behaviour may vary with seizures and anti‐seizure medication (ASM) side effects. Smartphones have the potential to monitor day‐to‐day neurobehavioural patterns objectively. We present the ca...

Sudden unexpected death in epilepsy (SUDEP) is responsible for most epilepsy-related deaths. It is mainly related to unwitnessed nocturnal convulsions, either focal to bilateral or generalised tonic–clonic seizures (TCS). Targeted preventive strategies are currently lacking as underlying mechanisms are largely unknown. Antiseizure medications (ASMs...

Objective This study was undertaken to develop a model and perform a preliminary internal validation study of the Scale for Objective Diagnostic Components of Paroxysmal Events (STAMP). Methods We developed STAMP, which builds on the International League Against Epilepsy task force scale for functional seizures with additional categories for epile...

Op 12 september 2023 verdedigde Anouk van Westrhenen haar proefschrift, getiteld Uncovering the value of autonomic signs and seizure detection in epilepsy care aan de Universiteit Leiden. In een ambitieuze thuistrial toont ze aan dat de ‘NightWatch’ betrouwbaar alarmeert bij nachtelijke zware epileptische aanvallen en de stress hierover bij ouders...

Neurobehavioural comorbidities have a detrimental effect on the quality of life of people with epilepsy, yet tracking their impact is challenging as behaviour may vary with seizures and anti-seizure medication side effects. Smartphones have the potential to monitor day-to-day neurobehavioural patterns objectively. We present the case of a man in hi...

Background In persons with Parkinson’s Disease (PD) or certain forms of atypical parkinsonism, orthostatic hypotension is common and disabling, yet often underrecognized and undertreated. About half of affected individuals also exhibit supine hypertension. This common co-occurrence of both orthostatic hypotension and supine hypertension complicates...

Objective Guidelines suggest considering antiseizure medication (ASM) discontinuation in seizure‐free patients with epilepsy. Past work has poorly explored how discontinuation effects vary between patients. We evaluated 1) What factors modify the influence of discontinuation on seizure risk; and 2) The range of seizure risk increase due to disconti...

Background In persons with Parkinson’s disease (PD) or certain forms of atypical parkinsonism, orthostatic hypotension is common and disabling, yet often underrecognized and undertreated. About half of affected individuals also exhibit supine hypertension. This common co-occurrence of both orthostatic hypotension and supine hypertension complicates...

Purpose We compared hemodynamic parameters between subjects with marked, intermediate and minimal cardioinhibition during vasovagal syncope. Methods The study included subjects with a decrease in heart rate while experiencing a complete vasovagal syncope during tilt-table testing. The subjects were classified as having marked, intermediate or mini...

Purpose To understand the influence of the coronavirus disease 2019 (COVID-19) pandemic on clinical autonomic education and research in Europe. Methods We invited 84 European autonomic centers to complete an online survey, recorded the pre-pandemic-to-pandemic percentage of junior participants in the annual congresses of the European Federation of...

Background Syncope management is fraught with unnecessary tests and frequent failure to establish a diagnosis. We evaluated the potential of implementing the 2018 European Society of Cardiology (ESC) Syncope Guidelines regarding diagnostic yield, accuracy and costs. Methods A multicentre pre-post study in five Dutch hospitals comparing two groups...

Symptoms of autonomic dysfunction are prevalent and can be very debilitating, reducing the quality of life in patients with Parkinson’s disease (PD) and other synucleinopathies such as dementia with Lewy bodies and multiple system atrophy. Non-pharmacological therapies are key to effective management and are frequently used alone in patients with m...

Introduction: Seizure detection devices (SDDs) may lower the risk of sudden unexpected death in epilepsy (SUDEP) and provide reassurance to people with epilepsy and their relatives. We aimed to explore the perspectives of those receiving secondary care on nocturnal SDDs and epilepsy in general. Materials and methods: We recruited adults with ton...

To systematically summarize the evidence of head-up tilt sleeping (HUTS) on orthostatic tolerance, we conducted a systematic, predefined search in PubMed, OVID Embase, Cochrane and Web of Science. We included studies assessing the effect of HUTS on orthostatic tolerance and other cardiovascular measures and rated the quality with the American Acade...

Objective There is a pressing need for reliable automated seizure detection in epilepsy care. Performance evidence on ambulatory non‐electroencephalography‐based seizure detection devices is low, and evidence on their effect on caregiver's stress, sleep, and quality of life (QoL) is still lacking. We aimed to determine the performance of NightWatch...

Orthostatic hypotension (OH) is an established and common cardiovascular risk factor for falls. An in-depth understanding of the various interacting pathophysiological pathways contributing to OH-related falls is essential to guide improvements in diagnostic and treatment opportunities. We applied systems thinking to multidisciplinary map out causa...

Objective: A substantial number of patients with a transient loss of consciousness (T-LOC) are referred to a tertiary syncope unit without a diagnosis. This study investigates the final diagnoses reached in patients who, on referral, were undiagnosed or inaccurately diagnosed in secondary care. Methods: This study is an in-depth analysis of the...

Objective: To investigate the impact of the coronavirus-disease-2019 (COVID-19) pandemic on European clinical autonomic practice. Methods: Eighty-four neurology-driven or interdisciplinary autonomic centers in 22 European countries were invited to fill in a web-based survey between September and November 2021. Results: Forty-six centers comple...

Transcranial magnetic stimulation (TMS) with electroencephalography (EEG), that is TMS-EEG, may assist in managing epilepsy. We systematically reviewed the quality of reporting and findings in TMS-EEG studies on people with epilepsy and healthy controls, and on healthy individuals taking anti-seizure medication. We searched the Cochrane Library, Em...

Objective Guidelines suggest considering antiseizure medication (ASM) discontinuation in patients with epilepsy who become seizure‐free. Little is known about how discontinuation decisions are being made in practice. We measured the frequency of, and factors associated with, discussions and decisions surrounding ASM discontinuation. Methods We per...

Objective: Guidelines suggest considering antiseizure medication (ASM) discontinuation in patients with epilepsy who become seizure-free. Little is known about how discontinuation decisions are being made in practice. We measured the frequency of, and factors associated with, discussions and decisions surrounding ASM discontinuation. Methods: We pe...

New data seems to indicate that atomoxetine (NET inhibitor) may prevent vasovagal syncope. May we say that more (norepinephrine) is less (syncope) in the end?

Het vinden van de juiste medicatie voor mensen met epilepsie is niet eenvoudig. Variatie tussen patiënten in de mate van remming van hersenactiviteit verklaart mogelijk waarom medicijnen bij de één wel en bij de ander niet werken. Analyse van het EEG tussen aanvallen in biedt inzicht in de mate van verstoorde remming. Hier beschrijven we recent ges...

Objective Prolonged postictal generalized electroencephalographic suppression (PGES) is a potential biomarker for sudden unexpected death in epilepsy (SUDEP), which may be associated with dysfunctional autonomic responses and serotonin signaling. To better understand molecular mechanisms, PGES duration was correlated to 5HT1A and 5HT2A receptor pro...

Objectives: To identify neurology-driven or interdisciplinary clinical autonomic nervous system (ANS) laboratories in Europe, describe their characteristics and explore regional differences. Methods: We contacted the European national ANS and neurological societies, as well as members of our professional network to identify clinical ANS laborato...

Background and purpose: Disorders of the autonomic nervous system (ANS) are common conditions, but it is unclear whether access to ANS healthcare provision is homogeneous across European countries. The aim of this study was to identify neurology-driven or interdisciplinary clinical ANS laboratories in Europe, describe their characteristics and expl...

Orthostatic hypotension is an unusually large decrease in blood pressure on standing that increases the risk of adverse outcomes even when asymptomatic. Improvements in haemodynamic profiling with continuous blood pressure measurements have uncovered four major subtypes: initial orthostatic hypotension, delayed blood pressure recovery, classic orth...

Smartphones offer unique opportunities to trace the convoluted behavioral patterns accompanying healthy aging. Here we captured smartphone touchscreen interactions from a healthy population (N = 684, ∼309 million interactions) spanning 16 to 86 years of age and trained a decision tree regression model to estimate chronological age based on the inte...

Purpose We performed an economic evaluation, from a societal perspective, to examine the cost-utility and cost-effectiveness of a wearable multimodal seizure detection device: NightWatch. Methods We collected data between November 2018 and June 2020 from the PROMISE trial (NCT03909984), including children aged 4-16 years with refractory epilepsy l...

Objective To assess the performance of a multimodal seizure detection device, first tested in adults (sensitivity 86%, PPV 49%), in a pediatric cohort living at home or residential care. Methods In this multicenter, prospective, video‐controlled cohort‐study, nocturnal seizures were detected by heartrate and movement changes in children with epile...

Background Cardioinhibition may diminish with age, but the changing balance of cardioinhibition and vasodepression with age has not been quantified, leaving the mechanism of vasovagal syncope (VVS) in old age unclear. Objectives This study sought to quantify age-related changes of vasodepression and cardioinhibition in tilt-induced VVS. Methods W...

Op 26 januari 2022 promoveerde Dirk Saal aan de Universiteit Leiden op het proefschrift Understanding syncope in the framework of transient loss of consciousness. Zijn klinisch georiënteerde werk plaatst de verschillende vormen van syncope in het bredere perspectief van de wegraking, ofwel transient loss of consciousness. De bijdragen variëren van...

Cenobamaat maakt als nieuw middel binnenkort zijn opwachting op de Nederlandse markt van anti-aanvalsmedicatie. Wat zijn de achterliggende werkingsprincipes van dit medicijn? Welke resultaten kunnen we verwachten op basis van eerdere trials? En biedt zijn intrede ook aanvullende kansen, bijvoorbeeld om therapeutische (keuze)processen te verbeteren?...

Introduction: The lack of reliable biomarkers constrain epilepsy management. We assessed the potential of repeated transcranial magnetic stimulation with electromyography (TMS-EMG) to track dynamical changes in cortical excitability on a within-subject basis. Methods: We recruited people with refractory focal epilepsy who underwent video-EEG mon...

Although transient loss of consciousness (TLOC) is a common problem, hospital care for patients with TLOC is characterised by high rates of no diagnosis and misdiagnosis, accompanied by unnecessary hospital admissions and tests. We attribute these problems to increasing specialisation as well as to a blind spot for vasovagal syncope, a condition no...

Objective A recent FDA warning concerning an arrhythmogenic potential of lamotrigine created concern in the neurological community. This warning was based on in vitro studies, but no clinically relevant risk was considered. This rapid systematic review aims to elucidate the risk of lamotrigine on sudden death or electrocardiogram abnormalities. Me...

Objective Previous studies identified essential user preferences for seizure detection devices (SDDs), without addressing their relative strength. We performed a discrete choice experiment (DCE) to quantify attributes' strength, and to identify the determinants of user SDD preferences. Methods We designed an online questionnaire targeting parents...

Introduction Caring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP), may cause high parental stress and increased anxiety. Nocturnal supervision with seizure detection devices may lower SUDEP risk and decrease parental b...

The pathophysiology of vasovagal syncope (VVS) is reviewed, focusing on hemodynamic aspects. Much more is known about orthostatic than about emotional VVS, probably because the former can be studied using a tilt table test (TTT). Recent advances made it possible to quantify the relative contributions of the three factors that control blood pressure...

Epileptic networks are intimately connected with the autonomic nervous system, as exemplified by a plethora of ictal (during a seizure) autonomic manifestations, including epigastric sensations, palpitations, goosebumps and syncope (fainting). Ictal autonomic changes might serve as diagnostic clues, provide targets for seizure detection and help us...

Introduction In patients with ictal asystole (IA) both cardioinhibition and vasodepression may contribute to syncopal loss of consciousness. We investigated the temporal relationship between onset of asystole and development of syncope in IA, in order to estimate the frequency with which pacemaker therapy, by preventing severe bradycardia, may dimi...

Een recente waarschuwing van de US Food and Drug Administration (FDA) aangaande het gebruik van lamotrigine (Lamictal®) heeft veel stof doen opwaaien. De FDA waarschuwt voor het optreden van ritmestoornissen bij gebruik van lamotrigine door mensen met een geleidingsstoornis of andere cardiale comorbiditeiten. In deze bijdrage worden de achtergronde...

Objective To define and evaluate hemodynamic criteria to distinguish between classical orthostatic hypotension (cOH) and vasovagal syncope (VVS) in tilt table testing (TTT). Methods Inclusion criteria for VVS were a history of VVS and tilt-induced syncope defined as a blood pressure (BP) decrease and electroencephalographic changes during syncope...

The recent recommendations regarding tilt table testing (TTT) from the European Federation of Autonomic Societies (EFAS) provides a rationale and evidence-base for the use of TTT in conditions that cause transient loss of consciousness (TLOC) and insights into current attitudes regarding TTT.1, 2 Historically, only few neurologists took an interest...

Objective To identify the molecular signaling pathways underlying sudden unexpected death in epilepsy (SUDEP) and high-risk SUDEP compared to epilepsy control patients. Methods For proteomics analyses, we evaluated the hippocampus and frontal cortex from microdissected post-mortem brain tissue of 12 SUDEP and 14 non-SUDEP epilepsy patients. For tr...

People with epilepsy have a three‐fold increased risk of dying prematurely, and a significant proportion is due to sudden cardiac death or acute myocardial infarctions. The causes of increased cardiovascular morbidity and mortality in epilepsy are manifold and include acute or remote effects of epileptic seizures, the longstanding epilepsy itself o...

An expert committee was formed to reach consensus on the use of tilt table testing (TTT) in the diagnosis of disorders that may cause transient loss of consciousness (TLOC) and to outline when other provocative cardiovascular autonomic tests are needed. While TTT adds to history taking, it cannot be a substitute for it. An abnormal TTT result is mo...

Aims We describe five patients with syncope caused by a complete atrioventricular block (AVB) while they were bending forward, not rising after bending, and aim to describe the occurrence and the association between bending forward and AVB. Methods and results In two patients, bending forward was the exclusive trigger for syncope, while in the rem...

Introduction User preferences for seizure detection devices (SDDs) have been previously assessed using surveys and interviews, but these have not addressed the latent needs and wishes. Context mapping is an approach in which designers explore users’ dreams and fears to anticipate potential future experiences and optimize the product design. Method...

Climate change is with us. As professionals who place value on evidence-based practice, climate change is something we cannot ignore. The current pandemic of the novel coronavirus, SARS-CoV-2, has demonstrated how global crises can arise suddenly and have a significant impact on public health. Global warming, a chronic process punctuated by acute e...

Aims: Syncope care is often fragmented and inefficient. Structuring syncope care through implementation of guidelines and Syncope Units has been shown to improve diagnostic yield, reduce costs and improve quality of life. We implemented the European Society of Cardiology (ESC) 2018 syncope guidelines at the Emergency Departments (ED) and establish...

An expert committee was formed to reach consensus on the use of Tilt Table Testing (TTT) in the diagnosis of disorders that may cause transient loss of consciousness (TLOC) and to outline when other provocative cardiovascular autonomic tests are needed. While TTT adds to history taking, it cannot be a substitute for it. An abnormal TTT result is mo...

The International League Against Epilepsy (ILAE) / American Epilepsy Society (AES) Task Force on the cardiac effects of lamotrigine was convened in response to a recent addition to the lamotrigine label by the US Food and Drug Administration (FDA).1 Lamotrigine is the nonproprietary name for a medicine that is sold under its generic name and severa...

Head-up tilt test (TT) has been used for >50 years to study heart rate/blood pressure adaptation to positional changes, to model responses to haemorrhage, to assess orthostatic hypotension, and to evaluate haemodynamic and neuroendocrine responses in congestive heart failure, autonomic dysfunction, and hypertension. During these studies, some subje...

Climate change is with us. As professionals who place value on evidence-based practice, climate change is something we cannot ignore. The current pandemic of the novel coronavirus, SARS-CoV-2, has demonstrated how global crises can arise suddenly and have a significant impact on public health. Global warming, a chronic process punctuated by acute e...

Background Pure autonomic failure (PAF) and multiple system atrophy (MSA) are rare disorders causing severe autonomic failure. Their initially similar clinical presentation may lead to years of diagnostic difficulties. Improving the differentiation would have an important impact on patients and families in view of better prediction of disease progr...

Objective: Diagnosing autoimmune encephalitis (AIE) is difficult in patients with less fulminant diseases, like epilepsy. However, recognition is important, as patients require immunotherapy. This study aims to identify antibodies in patients with focal epilepsy of unknown etiology, and to create a score to preselect patient requiring testing. Me...

Dravet syndrome (DS) is an epileptic encephalopathy that still lacks biomarkers for epileptogenesis and its treatment. Dysfunction of NaV1.1 sodium channels, which are chiefly expressed in inhibitory interneurons, explains the epileptic phenotype. Understanding the network effects of these cellular deficits may help predict epileptogenesis. Here, w...