Vestibular disease
Mal de Débarquement Syndrome
This information is intended as a general introduction to this topic. As everyone is affected differently by balance and dizziness problems, you should speak to your doctor for individual advice.
For reasons of better readability, the generic masculine is used and the simultaneous use of the language forms male, female and diverse (m/f/d) is dispensed with. Unless otherwise indicated, the personal designations used in this patient information refer to all genders.
What is Mal de Débarquement Syndrome?
"Débarquement" is the French word for "disembarking". This refers to disembarking from a ship, train or plane. "Mal de Débarquement" therefore means "illness of disembarkation". It is also called "land sickness", the opposite of seasickness. If you have ever gotten off a train, a ship or a car and felt the ground sway under your feet, you have experienced mal de débarquement.
For most people, this feeling only lasts for a few minutes or hours. For some people, it can last for a few days or even weeks. But for some people, the feeling becomes chronic and lasts for a month or longer. This is known as Mal de Débarquement Syndrome (MdDS).
Researchers are not sure how many people have MdDS. About 4 in 5 people with MdDS are women, and the syndrome often occurs between the ages of 40 and 50. It can take a long time to be diagnosed with MdDS, which can be very frustrating for those affected. It can have a major impact on work and daily life.
MdDS was defined as a disease in 1987, but the symptoms were described centuries ago.
Summary
- Means "disease of disembarkation".
- Usually triggered by a long journey in a boat, car, train or plane.
- Middle-aged women are most frequently affected.
- It is not the same as motion sickness.
- The main symptom is a constant feeling of movement, except when moving passively, e.g. in a moving car.
- The cause of the development of the disease is not yet clear. There are many different hypotheses.
- As a rule, it is a chronic illness that lasts for weeks, months or even years.
- Treatment includes certain medications and vestibular rehabilitation.
- Experimental treatment methods include the VOR protocol and 'brain stimulation' (more precisely 'transcranial magnetic stimulation').
What causes mal de débarquement syndrome?
The actual cause of Mal de Débarquement Syndrome is not clear. Scientists have various theories about the causes of MdDS, including:
- A problem with the vestibulo-ocular reflex (VOR)
- A connection with hormone levels
- A form of vestibular migraine
The causes are still being investigated. It is possible that several different factors contribute to MdDS.
Theory: VOR problems
The brain's balance system combines information from many different sources, including:
- The vestibular system (the semicircular canals and macula organs in the inner ear), which perceives head movements and changes in the speed of head movement
- The visual system, i.e. the eyes
- The proprioceptive system, which sends signals about position, pressure, movement and vibration from the legs and feet and the rest of the body to the brain
The information from these systems is used by the vestibulo-ocular reflex (VOR). This reflex ensures that your eyes remain still even if your head moves. For example, you can focus on the words on this page even if you nod your head up and down or turn it back and forth. And when you walk, the VOR keeps your vision stable while your head bobs up and down.
Some researchers believe that MdDS occurs when you turn your head from side to side while your body is bobbing. They believe that the VOR adapts incorrectly in response to conflicting signals from the vestibular and visual systems. This is also called 'maladaptation'.
Theory: Hormonal factors
Mal de Débarquement Syndrome often occurs during the menopause or when a woman has her period or stops taking hormonal contraceptives. For many women, symptoms are worse during menstruation and better during pregnancy. All of these factors suggest that changes in hormone levels, particularly low estrogen levels, may be a factor in MdDS. Researchers are still investigating this theory and what it might mean for the treatment of MdDS.
Theory: Vestibular migraine
Many people with Mal de Débarquement Syndrome also have migraines. One study found that about 30% of people with MdDS also had migraines. Many of the symptoms of MdDS are similar to migraine symptoms, including sensitivity to light, nausea and headaches. For these reasons, some researchers believe that MdDS may be a type of migraine.
The main symptoms of Mal de Débarquement Syndrome are feelings of constant rocking, swaying, swaying and loss of balance, regardless of whether the person is walking, standing or lying down. A key feature of MdDS is that these symptoms often improve when the affected person moves passively, e.g. in a moving car or boat. Then the symptoms return when the person is back on solid ground.
People with MdDS often also have other symptoms, e.g:
- Sensitivity to light (photophobia)
- Head pressure
- Headache
- Nausea
- "Brain fog" or difficulties with thinking
- Disorientation
- Migraine
- Tiredness
- Insomnia or sleep disorders
- Avoidance of large, empty rooms (agoraphobia)
Anxiety or depression
Diagnosis of Mal de Débarquement Syndrome
The diagnosis of Mal de Débarquement Syndrome is often lengthy and requires many doctor's appointments. This can be very frustrating.
MdDS can be diagnosed by a neurologist or otolaryngologist who specializes in dizziness. These specialized doctors will take a thorough medical history, perform a neurological examination and various tests to assess the function of your vestibular system.
You can have some of the following diagnostic tests carried out:
- Vestibular functional examination
- Balance tests
- Imaging (MRI scan)
In people with MdDS, these tests usually show no abnormalities.
Treatment of mal de débarquement syndrome
Mal de Débarquement Syndrome often disappears on its own within 6 months or less. Your doctor may recommend medication to help you feel more comfortable during this time. Some people also find that meditation, psychological counseling, good sleep hygiene and/or reducing stress in their lives help with their symptoms. Sometimes lifestyle changes that help with migraines are also helpful with MdDS.
Physiotherapy in general seems to help some people with MdDS (56% in one study). Vestibular rehabilitation also seems to help some people with MdDS (about 38%). In the same study, vestibular rehabilitation was found to worsen some people's symptoms.
Since we don't know much about the causes of MdDS, several treatment options are still being investigated to find the best treatment.
Therapy option
Medication
There are various medications for mal de débarquement syndrome. These medications often improve the mood and quality of life of those affected, even if they do not help with the disease itself. These include
- Benzodiazepines such as clonazepam. However, there is a risk of addiction with these medications!
- Antidepressants such as selective serotonin reuptake inhibitors (SSRIs), SSRIs in combination with serotonin-norepinephrine reuptake inhibitors (SNRIs) and tricyclic antidepressants
- Anticonvulsants
- Calcium channel blockers
- Medication used for migraines
- Certain medications used to treat motion sickness, known as antivertiginosa, are not helpful for MdDS.
Therapy option
Vestibular Rehabilitation
Vestibular rehabilitation is an exercise therapy. Its goal is to help your brain relearn balance control and respond to signals from the visual and vestibular systems. A certified IVRT® dizziness and vestibular therapist can help you set treatment goals and create an appropriate program. However, some people find that vestibular rehabilitation worsens their symptoms instead of improving them.
It is very important to start the exercises gradually and increase them slowly and steadily. The treatment can extend over several months.
Therapy option
Experimental treatments
Treatments for Mal de Débarquement Syndrome that are still under investigation include the VOR protocol and brain stimulation.
The VOR protocol attempts to "reset" the vestibulo-ocular reflex. This involves using special equipment to project vertical black and white stripes that constantly move sideways (an optokinetic stimulus). The person with MdDS watches these stripes while a healthcare professional turns their head from side to side at the same speed as the rocking symptoms. Each session lasts about 3 to 5 minutes, and sufferers take 1 to 8 sessions per day over a period of up to 5 days. This procedure seems to help many people who try it, but some find that their symptoms eventually return. This treatment is still being researched and is only offered in specialized centers, mainly in the US.
Repetitive transcranial magnetic stimulation (rTMS) is a form of brain stimulation that is being studied for many different conditions such as migraines, tinnitus and depression. A device sends a series of short magnetic pulses to a specific area of the brain. This changes the way the neurons in that area function. This treatment is still experimental for MdDS.
Therapy option
Reappearance
Mal de Débarquement Syndrome can sometimes return (recur) after it has disappeared. Some researchers recommend taking very low doses of benzodiazepines before and during long car, boat, train or plane journeys to prevent this. However, this has not yet been formally investigated in a clinical trial.
What happens next?
What you can expect in the future.
investigate many aspects of Mal de Débarquement Syndrome, including:
- What causes it
- Why women have a higher risk during the menopause or menstruation
- Why many people show altered thought processes (cognition) after an MdDS disorder
- The role of other related disorders such as visually induced vertigo, vestibular migraine and depression
- How Mal de Débarquement Syndrome is best treated
- Why it sometimes returns
In order to keep this patient information as short as possible, we have not included a detailed list of references. However, this can be requested at any time at info@ivrt.de.
