The term “Mal de débarquement” is French term which means “sickness after disembarkation”. It presents with complex, undesirable symptoms; therefore, it is termed a syndrome.
Symptoms and triggers of MdDS
Mal de Debarquement Syndrome is abbreviated to MdDS and commonly named disembarkment syndrome. MdDS is a rare neurological condition which can occur after a boat trip, aircraft flight, or when the body sustains a prolonged period of movement in multiple planes of motion, simultaneously. There are also many cases were MdDS has occurred spontaneously.
Imagine stepping off a boat, plane or train and then feeling that you are constantly rocking, bobbing or swaying, like a buoy on the water in a force 8 gale. Whilst many people experience these disorientating sensations for a few minutes after disembarkation, imagine if these sensations never resolved. This is the case for people with persistent Mal de Debarquement Syndrome (MdDS).
Although motion triggers are commonly reported, some patients develop MdDS symptoms for other reasons including after playing computer games or having operations. An interesting feature of this condition is that patients often feel total or partial relief from the motion sensations when they are re-exposed to passive motion, for example when in a car or on a train. The downside to this is that when the motion stops, the severity of symptoms often increases.
It is perfectly normal to feel a floating, rocking or swaying sensation when getting off a boat or plane. These symptoms would ordinarily last a few hours or a few days. Sea sickness or motion sickness are obviously triggered by motion and commonly experienced. The same can occur when we are back on land ‘land sickness’ or ‘regaining your land legs’. It is when symptoms do not reside and potentially last for many days, months or even years that MdDS can be the cause. The presentation of MdDS symptoms tend to fluctuate and alternate from day to day. A swaying sensation may change to a rocking or bobbing sensation for no understandable reason.
MdDs is associated with a number of other symptoms, such as insomnia, headache, brain fog, blurred vision and disorientation, just to name a few. The condition can be debilitating, disabling, life changing and may affect all aspects of people’s lives.
With all balance conditions there is a physical and emotional stress which causes anxiety. We all have life stresses to varying degrees and when added to the above can lead to hyper-vigilance and triggering of the autonomic nervous system (fight, flight and fright response to danger). With MdDS all balance function tests are normal which can lead to a diagnosis of psychosomatic cause. It is a stigma that has been fought by many for decades. Still today there are many who are skeptical about the diagnosis of MdDS, many suggest that the treatments for this condition are a placebo.
As with most rare conditions, MdDS is a complex, multi-system and multi-symptom condition and a wide range of physical/environmental factors have an impact on symptom levels. Enclosed and wide open spaces are associated with an increase in symptom severity and Lux level changes (illuminance). Hormone fluctuations, audio frequencies, ‘bland’ or ‘busy’ visual environments, changes in air pressure etc. can also influence symptom levels. The constant feeling of being about to fall over also wreaks havoc with a patient’s sympathetic and parasympathetic systems and disrupted sleep is a common feature of this syndrome. Since loss of sleep can increase symptom severity, patients sometimes feel that they are caught in a vicious circle.
Nonetheless, MdDS patients often remain remarkably cheerful and determined. They do a great deal to help raise awareness which is gradually dispelling the myth that MdDS only affects women and only occurs after disembarkation from prolonged cruises.
In some cases, the onset can be what could be described as a perfect storm of events that may be a trigger for MdDS e.g. two or a multitude of the following; – prolonged motion, hormonal changes, anxiety, depression, triggering of the limbic system (fight, flight or fight response). Ninety percent of MdDS cases are in women but at present there is little evidence to support the theory that there is a hormonal link. Periods of remission, can occur spontaneously or maybe triggered by events such as motion, stress or illness etc. MdDS can then be retriggered days, months or even years later e.g. by motion, stress or illness etc.
When I see patients with MdDS I keep in mind that the sensations of constant motion are not the only symptoms they experience and that this condition has a huge impact on their lives, often resulting in the loss of their careers and severe social isolation. Not surprisingly, many patients with MdDS also report experiencing cognitive dysfunction and physical exhaustion. As one patient put it ‘My system has to work so hard, just to stay upright, that there’s little processing power available for anything else’. People with Parkinson’s Disease have a saying; ‘We can’t walk and talk at the same time’ and this resonates with many MdDS patients’
Motion triggered MdDS should be the easiest of all rare conditions to diagnose. But a recent study by Rare Diseases United Kingdom (RDUK) noted that many rare disease patients face unacceptable barriers to diagnosis: they struggle to be believed by their doctors and/or are told that their symptoms are considered to be ‘psychological’. Both these approaches can delay accurate diagnosis and any diagnostic delay will be psychologically damaging. Patients with MdDS who manage to get through these barriers can be labelled as having rotational vertigo, which can also lead to mismanagement of the symptoms. However, with the growing awareness about MdDS I hope to see a reduction in waiting times for diagnoses and far fewer misdiagnoses.
Diagnosis of MdDS is usually made by excluding other conditions. The tests involved can be very unpleasant. Travelling for a diagnosis is contra-indicated for people with MdDS, especially if they are in remission, which creates further problems for patients who need an official diagnosis.
Treatment options for MdDS
MdDS has been recognized and researched for decades, the cause has been elusive and researchers around the world continue to hypothesize. Studies have suggested a link to a variant of migraine or related to motion sickness with the majority agreeing ‘MdDS is a neurological condition’.
In many parts of the world, these are very limited. Some patients are referred for vestibular rehabilitation therapy but yes, you’ve guessed it, they have to travel for this. While this therapy can restore a sense of physical confidence it can also hike symptom levels, especially if patients, desperate to get into remission, over-do the exercises. There is good anecdotal evidence that neuro-physiotherapy is beneficial but accessing this therapy can be problematic or impossible.
So, until recently, the outlook for people with MdDS has been gloomy. But, thankfully, recent research has resulted in the development of two potential protocols for the treatment of MdDS; opto-kinetic stimulation and cranial stimulation. With financial support from the UK patient group I was able to train with Dr Dai, who developed the opto-kinetic protocol. The ultimate goal must be an effective protocol that patients can use at home. But the great progress in the last few years has given my patients a renewed sense of optimism.
Dr Dai’s opto-kinetic protocol
In a study published in 1962, researchers placed volunteers in a room that rotated slowly, then asked them to move their heads from side to side. The study volunteers developed unusual patterns of eye movements. Mingjia Dai, Ph.D., assistant professor of neurology at the Icahn School of Medicine at Mount Sinai in New York happened to find interest in this paper. He was particularly interested in the types of eye movements which are a hallmark of MdDS. Dr Dai and his colleagues, Bernard Cohen, M.D and Morris Bender Professor of Neurology, devised a study which supported the results of the space flight experiments and pointed to a disturbance of the vestibulo-ocular reflex (VOR) as the cause of the eye movements. The VOR is a natural process by which your eyes compensate for head movements, keeping the image from becoming blurry while maintaining clear vision and spatial orientation. The VOR is an integral part of the balance system and works from a reflex from your eye (the fovea) to the inner ear balance organs.
Dr. Dai hypothesized that MdDS was caused by a maladaptation of the VOR. When you are at sea, the VOR adapts to the changing, unpredictable motion in a multitude of directions. The balance system has to change its strategy to improve your stability and spatial orientation. When returning to land, the VOR does not re-adopt to being on land. If this hypothesis is correct, then it would seem possible to readapt the VOR.
The theory developed a treatment plan whereby an opposing set of visual cues and pattern of motion are used to redirect or correct the balance strategy and realign the VOR.
When a car veers to the right you would correct this by turning your wheel to the left this strategy cancels out the veering to the right. This strategy could potentially cancel out the neurological misaligned components of the VOR and alleviate symptoms.
Dr Dai’s initial research study of 24 participants (21 women, three men, mean age 43.3 years), 17 recovered completely or improved substantially, with a mean follow-up of approximately one year after treatment. Six responded well initially but their symptoms returned, and one participant received no benefit. Side effects of the treatment were negligible.
The researchers concluded that maladaptation of the VOR was responsible for producing MdDS and that individual customized patterns of visual stimuli and head movements can re-adapt it.
With the continued research we hope to answer a number of questions. Like fully understanding why symptoms are relieved by motion, which neural networks are responsible for the sensation of motion and why more women than men are effected by MdDS.
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