June is MdDS Awareness Month. This year, as attention on Mal de Débarquement Syndrome grows — with recent coverage in Good Housekeeping, The Independent, and UNILAD bringing it to wider public notice — it is more important than ever that the right information reaches the right people because two of the greatest obstacles facing patients with this condition is not the condition itself but the length of time it takes to find someone who recognises this rare disorder and finding a dedicated vestibular physiotherapist with an underpinning of neurological sciences who uses the late Dr Dai’s treatment paradigm.
“The first and only successful treatment in patients who had been suffering for up to 15 to 20 years. The successful treatment of the MdDS has been carried on by Dai’s colleague, Sergei Yakushin, Ph.D., Associate Professor of Neurology” (Cohen B. 2019.)
I cannot emphasise this enough because there are alternative treatment approaches which do not strictly apply Drs Mingjia Dai and Bernard Cohen’s treatment paradigm. Unlike Drs Dai and Cohen, the other studies have not published a significant body of patient data, their methodologies are different, they propose a standardised treatment approach and encourage self-treatment. I highly recommend reading these studies and comparing their methodologies.
If you stepped off a cruise ship, a ferry, or a long-haul flight, weeks or months ago, and have not felt steady on land since, this article is for you. If you have been told it is just sea legs, or anxiety, or something you need to push through, this article is for you. And if you have been through multiple consultations without finding answers, please read on. You are not alone, and you are not imagining it.
What Is Actually Happening in Your Body
After spending time on a moving vessel, the brain adapts. It recalibrates its understanding of what “normal” motion feels like, because for the duration of that journey, constant movement was normal. For most people, this recalibration reverses itself within 24 to 48 hours of returning to land. The temporary unsteadiness you feel after a boat trip is a completely normal physiological response and is called Mal de Debarquement (disembarking sickness).
For some people, this recalibration does not reverse. The brain continues to perceive motion that is no longer there. The sesations of rocking, swaying, gravitational pull, and bobbing persists. Days become weeks. Weeks become months. In some cases, years pass.
This is prolonged or triggered Mal de Débarquement Syndrome. Translated from the French, it means “sickness of disembarkation.” It is a rare neurological condition which originates in the brain’s processing systems. It is not an inner ear problem, which is excluded in the examination of the patient. Moreover, this distinction is not a technicality. It determines everything about how the condition must be assessed and treated.
Why So Many People End Up at the Wrong Door
Dizziness is a common sensation reported by MdDS patients amongst others such as unsteadiness, spatial disorientation, and head pressure. The dizziness is not vertigo, which is an illusion of movement. Hence, MdDS is frequently mistaken for an inner ear condition and sometimes Persistent Perceptual-Postural Dizziness (PPPD). This is one of the most common and consequential misconceptions surrounding the syndrome, and it is one the MdDS Foundation has worked actively to correct in public and medical settings.
A procedure called the Epley manoeuvre repositions the displaced calcium carbonate crystals (otoconia) in the inner ear. It is appropriate and effective for a specific inner ear condition called benign paroxysmal positional vertigo. It has no application in prolonged/triggered MdDS, because MdDS does not involve displaced crystals. Applying an inner ear (peripheral vestibular disorder) treatment to a brain-based (central vestibular) condition will not produce results. If you have been through this without improvement, that experience is entirely consistent with what many prolonged/triggered MdDS patients report, and it is not a reflection of the severity of your condition or your response to treatment. Having said this, it is possible for a patient with MdDS to also have benign paroxysmal positional vertigo, which is included in the assessment of the patient.
Similarly, general vestibular rehabilitation exercises, while valuable for inner ear disorders such as vestibular neuritis which causes vertigo and balance problems, will not resolve your prolonged/triggered MdDS symptoms. You need to see a clinician who understand MdDS and specialises in the Dr Dai treatment paradigm.
This brings me to something I feel compelled to address directly, because it speaks to a misunderstanding I encounter more often than you might expect. I was recently contacted by a person who had read about the treatment approach developed by Drs Mingjai Dai and Bernard Cohen. She attempted to replicate this treatment at home with the help of a family member and wanted to know what she had done wrong because her symptoms persisted. She had already received vestibular rehabilitation and expressed there was no change in her symptoms.
The answer is not a simple one, because the question itself reflects a broader problem. The Dai and Cohen treatment paradigm is not a set of instructions that can be safely followed at home. It requires a clinician with a detailed understanding of vestibular neurology, precise calibration of optokinetic stimulation, specific frequency and orientation parameters, and the clinical judgment to adapt the approach to each individual patient’s presentation. Getting one of those elements wrong does not merely reduce the effectiveness of the treatment. It can reinforce the wrong neural patterns entirely.
One hat does not fit all. This is not a condition where well-intentioned self-management is a safe substitute for specialist clinical care. Please do not attempt to treat yourself or have a family member treat you based on information found online.
Recognising the Symptoms
MdDS is often difficult to describe to others, which adds to the isolation many patients feel. The core sensation is a persistent rocking, bobbing, or swaying, as though you are still on the water. Some people describe it as gentle but relentless. Others experience a more disruptive oscillation or a downward gravitational pulling into the earth or a feeling of being pulled strongly to the left or right side which (deleted that) interferes with employment, balance and walking, concentration, short-term memory, screen use, and social engagement genuinely exhausting.
Alongside this, people commonly live with headaches and head pressure, cognitive slowing that is sometimes called brain fog, fatigue that is disproportionate to activity levels, neck stiffness, and heightened sensitivity to busy visual environments such as supermarkets or moving crowds. Anxiousness may creep into the picture. The sooner you see a qualified health practitioner the better it is for your overall well-being.
One feature that often surprises people: symptoms frequently improve when riding in a moving vehicle (car). The passive, rhythmic motion of a moving vehicle can temporarily suppress the sensation. If you have noticed this, it is not a coincidence. It is a recognised feature of prolonged/triggered MdDS.
Symptoms that worsen when lying down, or when turning the head, are also clinically relevant and worth reporting clearly to any clinician you see.
It Does Not Always Begin on a Boat
While sea and air travel are the most recognised triggers, MdDS can also develop without any motion trigger. A respiratory infection, a neck injury, or other physiological disruption can produce an identical pattern of symptoms. If you have never been on a boat but recognise everything described here, the condition is still worth investigating.
When the Obvious Treatments Have Not or Seemed Not To Work
One patient who came through my practice in Adelaide had done everything asked of her. She had seen multiple neurologists. She had attended a specialist dizzy centre. She had kept a detailed symptom diary. She had been patient and thorough and persistent. And still, the conventional pathway eventually ran out of road. She responded well to Dr Dai’s treatment paradigm and treatment of her upper cervical spine, but she declined to accept that as the final answer.
Through her own determination, and by reaching out to a US-based MdDS researcher, she was directed toward a venous compression specialist in Australia. Following multidisciplinary assessment at a specialist centre in Sydney, she underwent surgery to address compression of a large vein at the top of her neck, a rare disorder requiring a highly qualified multi-disciplinary team of surgeons to undertake surgery. One-week post-surgery she contacted me and reported her refractory symptoms had resolved fully.
Her recovery is ongoing, but she found her way there!
Her story is not included here to suggest that surgery is the answer for most people with MdDS. It is included because it illustrates and highlights several critical points.
Firstly, in some patients, particularly those who have not responded to appropriate treatment, there may be an additional or different underlying mechanism that has not yet been identified. Recent research published in 2025 has begun to explore the role of extracranial venous compression in a subset of treatment-refractory patients, and while this is an emerging area requiring much further investigation, it reinforces the importance of not accepting an incomplete answer.
Secondly, I cannot emphasise enough the importance of listening to your patient. This is good medicine.
Thirdly, remain curious, open-minded, compassionate, humble, patient, and willing to say: I do not know, but I will investigate this.
Fourthly, and no less important than the other points raised, we can learn a great deal from our patients, as I have been reminded. This has deepened and broadened my clinical knowledge and assessment of prolonged/triggered MdDS. Nobody knows it all.
This is for general information only. The specifics of your situation must be assessed and discussed with a qualified health professional with relevant expertise.
What to Do Next
If you recognise yourself in this article, the most important step is finding the right clinician. MdDS requires assessment by someone with specific expertise in vestibular disorders and neurological balance conditions. A general practitioner is a reasonable starting point for an onward referral, but you need to reach a specialist who knows this condition well.
When contacting a clinic or specialist, it is entirely reasonable to ask the following questions: Do you have specific experience assessing and treating Mal de Débarquement Syndrome? Are you familiar with the distinction between MdDS and inner ear conditions such as benign paroxysmal positional vertigo and vestibular hypofunction? What assessment approach do you use? Is your practice familiar with the current evidence-based treatment protocols for prolonged MdDS?
These are not confrontational questions. They are informed questions, and any clinician with genuine expertise in this area will welcome them.
Dr Margie Sharpe is an Adelaide-based specialist in vestibular disorders with decades of clinical experience in the assessment and management of MdDS. If you are in South Australia, or are willing to travel for specialist assessment, her practice welcomes enquiries. The full clinical article on this research, written for health professionals, is also available on this website, titled: When the Gold Standard Is Not Enough: What a Patient’s Journey Taught Me About Venous Compression and Prolonged MdDS.
You Deserve a Complete Answer
MdDS is not a condition that reflects something wrong with you as a person. It is a real and rare neurological syndrome that remains underdiagnosed, is frequently mismanaged, and is still not well understood by many clinicians. The fact that you have not yet found adequate answers does not mean adequate answers do not exist.
June is MdDS Awareness Month. A new patient registry is being established to drive research toward better understanding and, ultimately, a cure. The world is beginning to listen more carefully. In my professional opinion, the most powerful thing you can do this month is ask the right questions, find the right clinician, and trust that your persistence matters.
It does.