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Mal De Debarquement Syndrome: a Survey on Subtypes, Misdiagnoses, Onset and Associated Psychological Features

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Mal De Debarquement Syndrome: a Survey on Subtypes, Misdiagnoses, Onset and Associated Psychological Features Journal of Neurology (2018) 265:486–499 https://doi.org/10.1007/s00415-017-8725-3 ORIGINAL COMMUNICATION Mal de Debarquement Syndrome: a survey on subtypes, misdiagnoses, onset and associated psychological features V. Mucci1,6 · J. M. Canceri2 · R. Brown3 · M. Dai4 · S. Yakushin4 · S. Watson5 · A. Van Ombergen1,6 · V. Topsakal6 · P. H. Van de Heyning1,6 · F. L. Wuyts1 · C. J. Browne2,7 Received: 28 November 2017 / Revised: 18 December 2017 / Accepted: 19 December 2017 / Published online: 5 January 2018 © The Author(s) 2018. This article is an open access publication Abstract Introduction Mal de Debarquement Syndrome (MdDS) is a neurological condition typically characterized by a sensa- tion of motion, that persists longer than a month following exposure to passive motion (e.g., cruise, fight, etc.). The most common form of MdDS is motion triggered (MT). However, recently it has been acknowledged that some patients develop typical MdDS symptoms without an apparent motion trigger. These cases are identifed here as spontaneous or other onset (SO) MdDS. This study aimed to address similarities and diferences between the MdDS subtypes. Diagnostic procedures were compared and extensive diagnostic guidelines were proposed. Second, potential triggers and associated psychological components of MdDS were revealed. Methods This was a retrospective online survey study for MT and SO MdDS patients. Participants were required to respond to a set of comprehensive questions regarding epidemiological details, as well as the diagnostic procedures and onset triggers. Results There were 370 patients who participated in the surveys. It is indicated that MdDS is often misdiagnosed; more so for the SO group. In addition to the apparent self-motion, both groups reported associated levels of stress, anxiety and depression. Discussion It appears at present that both MdDS subtypes are still poorly recognised. This was the frst attempt to evaluate the diagnostic diferences between MdDS subtypes and to propose a set of comprehensive diagnostic guidelines for both MdDS subtypes. In addition, the current research addressed that associated symptoms such as stress, anxiety and depres- sion should also be considered when treating patients. We hope this study will help the medical community to broaden their awareness and diagnostic knowledge of this condition. Keywords Mal de Debarquement · Mal de Debarquement Syndrome · MdDS · Vestibular · Neuro-otology · Psychological component of MdDS Introduction Mal de Debarquement Syndrome (MdDS) is a neurologi- cal disorder, typically characterized by the perception of Electronic supplementary material The online version of this article (http​s://doi.org/10.1007​/s004​15-017-8725​-3) contains self-motion that persists for more than 1 month from an supplementary material, which is available to authorized users. * C. J. Browne 4 Icahn School of Medicine, Mount Sinai Hospital, [email protected] New York City, NY, USA http://www.westernsydney.edu.au 5 Prince of Wales Private Hospital, Sydney, NSW, Australia 1 Antwerp University Research Centre for Equilibrium 6 University Department of Otorhinolaryngology and Head and Aerospace (AUREA) Antwerp, University of Antwerp, and Neck Surgery, Antwerp University Hospital, University Antwerp, Belgium of Antwerp, Antwerp, Belgium 2 School of Science and Health, Western Sydney University, 7 Translational Neuroscience Facility, School of Medical Sydney, NSW, Australia Sciences, UNSW Sydney, Sydney, NSW, Australia 3 School of Medicine, Western Sydney University, Sydney, NSW, Australia Vol:.(1234567890)1 3 Journal of Neurology (2018) 265:486–499 487 onset, which in most cases occurs after disembarkation The past few decades has seen rapid growth in interest from a vehicle (e.g., boat, cruise, train, plane). The phe- and knowledge regarding MdDS. As more patients have been nomenon was frst described by Erasmus Darwin in 1796 evaluated, it has become clear that typical MdDS symptoms [1] and anchored by Brown and Baloh in 1987 as Mal can occur from events other than motion or spontaneously. It de Debarquement [2–5]. Those cases with a symptomatic is apparent that MdDS can be categorized into two subtypes remission in 1 month from the onset are considered tran- according to the patient’s onset cause. From the literature, sient and hence named Mal de Debarquement (MdD) [3, a less common and less acknowledged form of MdDS is 4]. The main features of MdDS are a constant sensation non-motion or spontaneous/other (SO) onset MdDS. This of rocking, swaying, bobbing and bouncing when walk- type of MdDS can occur either in the complete absence of ing, as well as continuing when lying down [3, 6]. These an event or trigger, uncharacterised by a specifc motion- sensations are persistent while patients are awake and are related event (spontaneous), or can be associated with stress- independent on body position or movements. They are also ful events such as surgery, trauma, childbirth and others. accompanied by a myriad of symptoms such as height- Although there might be a better term than spontaneous ened sensory sensitivity (e.g., photophobia), head pres- MdDS or SO MdDS to describe the non-motion triggered sure, nausea, agoraphobia, brain fog, associated migraine nature of MdDS, this term has been accepted diferentially and fatigue, as well as depression and anxiety [5]. Inter- from MT MdDS. The literature about spontaneous MdDS is estingly, these symptoms often subside temporarily when very limited and there is a need to develop clear diagnostic patients are re-exposed to passive motion (e.g., driving or guidelines for this MdDS subtype. Aside from the difer- being a passenger in a car) [4, 5]. This temporary allevia- ences in onset cause, MT and SO MdDS appear to be symp- tion of symptoms is unique to MdDS patients and usually tomatically identical [9] and respond similarly to at least one used for confrming a diagnosis of the condition [7]. of the proposed treatments for MdDS [12]. However, a clear In the past decade, there has been a growing interest comparison between the two subtypes has yet to be done, in MdDS from the scientifc community, as well as from in particular taking into account epidemiology, diagnostic patients. Despite some MdDS information that is avail- procedures and potential triggers responsible for the onset. able from the MdDS community, many patients still fnd It has been reported that MdDS patients have a high level it difcult to receive a clear diagnosis from a healthcare of depression, poor quality of life and high illness intrusive- professional for timely treatment [8]. In general, MdDS is ness [8], regardless of their onset type. Illness intrusiveness still considered a rare neurological disorder [5], and the is considered an underlying determinant of the psychosocial prevalence of this condition has only been assessed in one impact of chronic diseases and illness, and it has been found study to date [9], where it was estimated to have an occur- to be correlated with poor quality of life [8]. Psychological rence rate of 1.3% in a neuro-otological clinic. Currently, and mood disorders (e.g., anxiety, depression) secondary to it is still unclear how many MdDS patients are misdiag- MdDS have been previously described in patients [6, 12]. It nosed or undiagnosed. It is known that on average, MdDS has been proposed that secondary mood disorders develop patients undergo around 19 appointments with healthcare as a consequence of the continuous perception of motion, professionals before receiving a correct diagnosis [10], which may lead to mental strain [9, 13], as well as the frus- and that this diagnostic process can take as long as sev- tration with the endless search for a correct diagnosis and eral years [11]. This is primarily due to unawareness and the changes in lifestyle required to cope with the condition. limited knowledge of MdDS amongst physicians or health- MdDS is believed to be extremely debilitating, both physi- care professionals, but also due to the lack of clear diag- cally and mentally [2, 3, 8–10]. The lack of awareness and nostic guidelines [7]. There was only one publication by recognition of MdDS from healthcare professionals further Van Ombergen et al. that set forth preliminary diagnostic aggravates patient predisposition to the development of guidelines based on a literature review [4]. Due to the lack psychological disorders (e.g., anxiety and/or depression) of understanding of the condition when they developed the [7]. Despite psychological symptoms being common, and guidelines, specifc aspects of MdDS such as onset types considered part of the MdDS pathophysiology, it remains were not distinguished [2]. MdDS is often unremarkable unclear if they are a pure consequence of MdDS induce- in peripheral vestibular function [3, 4], and brain imaging ment; or rather exist as vulnerability factors for develop- studies. This makes the diagnosis even more challenging. ing the condition. Similarly, stress has also been known for According to recent publications, MdDS, regardless of the negatively impacting MdDS patients [7]. It has long been cause of onset, has been typically misdiagnosed as ves- known that stress has many physiological efects on the body tibular migraine [9], ‘atypical’ Ménière’s disease, general [14] and it may be involved in infuencing central vestibular space and motion disorder, panic disorders and generalised and automatic functions in healthy individuals as well as in anxiety disorders [8]. patients [15]. However, despite the potential role of stress in MdDS [7], the relevance of stress has never been closely 1 3 488 Journal of Neurology (2018) 265:486–499 evaluated. As a result, it remains unclear if it is a key trigger main MdDS support groups: MdDS Australia Facebook during MdDS onset, or if stress responses are triggered once Support Group, MdDS UK Facebook Support Group, web- the condition is established. site of MdDS Research Group at Mount Sinai Hospital, Observing the commonality of specifc triggers across Western Sydney University MdDS Research Group Face- MdDS patients could help researchers understand why book page, website and Facebook of Vestibular Disorders MdDS develops at a specifc time.
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