Simon Mason <swldxer1958@gmail.com> wrote:
> I call this “Floating Away,” as I am constantly feeling that I am
> floating or bobbing in water, or floating on clouds.

> https://mddsfoundation.org/2023/06/08/floating-away/

Generally, note that MdDS “…may be due to a glitch in the brain pathways
involved in learning and adaptation”.

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Spike

Mal de Débarquement is characterized by a feeling of movement or motion sickness that does not stop when not in motion. It is most often caused by exposure to an unfamiliar movement and then the removal of that movement, like after sea travel, but can also occur spontaneously. Unlike some vestibular disorders, it is thought that the problem is not in the inner ear but rather in the brain. Currently, there is no specific diagnostic test, and treatment options are limited.

Mal de Debarquement Syndrome is a rare central vestibular disorder that typically arises following exposure to passive motion (i.e. boat, airplane, automobile, train, etc.). ‘Mal de Debarquement’ is French for ‘sickness of dis-embarkment’ 1. This term originally referred to a short-lived sensation of movement felt as an aftereffect of travel on water by ship or boat 2. For some individuals, these sensations do not improve, and after one month of experiencing these symptoms it is suggested that a patient has Mal de Debarquement Syndrome (MdDS).

The characteristic symptom of MdDS is a constant sensation of rocking, swaying and/or bobbing. There are a multitude of associated symptoms which are typical of most vestibular disorders, such as imbalance, unsteadiness, cognitive slowing, visual-motion sensitivity, brain fog and anxiety.

Simon Mason <swldxer1958@gmail.com> wrote:

> Mal de Débarquement is characterized by a feeling of movement or motion
> sickness that does not stop when not in motion.

Unattributed article in full here:

<https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/mal-de-debarquement/>

Generally, note that MdDS “…may be due to a glitch in the brain pathways
involved in learning and adaptation”.

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Spike

Mal de Debarquement or "MdDS" is a type of vertigo and imbalance that mainly occurs after getting off of a boat. The usual situation is that of a middle aged woman who has gone on a cruise. We use the abbreviation "MdDS" because it is currently favored over the simpler MDD as it has been pointed out that "MDD" can be confused with other disorders. Note that we have moved the "mdd" page to "MdDS", and the latter will be updated in the future.

There are several recent reviews of MdDS-- including Van Ombergen et al (2015), and Hain and Cherchi (2016), as well as efforts made to differentiate it from other dizzy symptom inventories such as vestibular migraine and PPPD. (Cha et al, 2020; Beh et al, 2021)

To our knowledge, the first potential reference to the syndrome was made by Erasmus Darwin, in 1796. He wrote:

"Those, who have been upon the water in a boat or ship so long, that they have acquired the necessary habits of motion upon that unstable element, at their return on land frequently think in their reveries, or between sleeping and waking, that they observe the room, they sit in, or some of its furniture, to librate like the motion of the vessel. This I have experienced myself, and have been told, that after long voyages, it is some time before these ideas entirely vanish. The same is observable in a less degree after having travelled some days in a stage coach, and particularly when we lie down in bed, and compose ourselves to sleep; in this case it is observable, that the rattling noise of the coach, as well as the undulatory motion, haunts us. " (Darwin, 1796).

A similar observation was made by Jack London in his book, Sea Wolf (1904), who discusses "This was the startling effect of the cessation of motion. We had been so long upon the moving, rocking sea that the stable land was a shock to us. We expected the beach to lift up this way and that, and the rocky walls to swing back and forth like the sides of a ship; and when we braced ourselves, automatically, for these various expected movements, their non-occurrence quite overcame our equilibrium."

If we look at both of these descriptions from the perspective of current definitions of MdDS (see below), neither mentions the duration and in particular, neither one documents a month of symptoms. So while they may document land sickness, they may not actually be about MdDS.

Some Cases:

A 50-year-old woman went on her first ocean cruise. She had some motion sickness on the cruise, which responded to transdermal scopolamine. Immediately after returning from the cruise and getting onto solid ground, she developed imbalance and a rocking sensation, accompanied by fatigue and difficulty concentrating. This persisted for months. She felt better however when she was driving. Her description was “Imagine feeling like you are on rough seas 24 hours a day, 7 days a week.”

A related case ? An avid cross country skier noted that after she would come home from a day of skiing, she developed a sensation as if she was still skiing until she went to sleep. She was always fine in the morning. Many patients with MdDS or rocking symptoms say they have "motion memory" meaning that they feel as if they are moving after driving, or sometimes even just riding on an elevator.

Simon Mason <swldxer1958@gmail.com> wrote:

> Mal de Debarquement or "MdDS" is a type of vertigo and imbalance that
> mainly occurs after getting off of a boat.

Unattributed article can be found here:

<https://dizziness-and-balance.com/disorders/central/MdDS.html>

Generally, note that MdDS “…may be due to a glitch in the brain pathways
involved in learning and adaptation”.

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Spike

Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both “felt” and “seen” by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.

After alighting or “debarking” (debarquement) the traveller continues to feel “all at sea”, unable to get their land legs back. Although most travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many weeks, months, even years afterwards.

The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs (eg Stemetil, Serc etc)

“Like trying to constantly walk on a mattress or trampoline”

is a good description of the main symptom, which is usually most pronounced when the patient is sitting still, or inactive. It is unique among balance disorders in that re-exposure to passive motion, such as driving, decreases the internal motion perception rather than increasing it.

https://www.mdds.org.uk/

Simon Mason <swldxer1958@gmail.com> wrote:

> Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying
> sensation often both “felt” and “seen” by the sufferer that occurs after
> exposure to motion (most commonly after a sea cruise or a flight).

> https://www.mdds.org.uk/

Generally, note that MdDS “…may be due to a glitch in the brain pathways
involved in learning and adaptation”, which could explain a lot in certain
cases.

--
Spike

Conclusions More than double the number of previously reported cases of mal de debarquement syndrome were identified by this study. The syndrome usually occurs in middle-aged women following an ocean cruise. Symptoms are often refractory to vestibular suppressants as well as physical therapy.

MAL DE DEBARQUEMENT (MDD), literally "sickness of disembarkment," refers to inappropriate sensations of movement after exposure to motion. The syndrome typically follows a sea voyage, but similar sensations have been described following extended train travel, space flight,1 and experience within a slowly rotating room.2 Symptoms usually include vague unsteadiness and disequilibrium or sensations of rocking and swaying, but not rotational vertigo.

Mal de debarquement is distinguished from motion sickness, airsickness, simulator sickness, or seasickness (mal de mer) because subjects are predominantly symptom free during the period of motion. Mal de debarquement is distinguished from "landsickness" or postmotion vertigo by duration. Landsickness typically lasts less than 48 hours.3,4 We, like most others reporting on MDD,5-7 define it almost exclusively as a syndrome that persists for at least 1 month. Some authors4 refer to the common short-lived postmotion vertigo as MDD, and the longer duration form as "persistent MDD."

To our knowledge, only 20 subjects with MDD as defined above have been described in the literature.5-7 However, this syndrome is probably more common than the literature7 might lead us to believe. We undertook a patient survey to better define MDD, to understand the etiology or mechanism of this disorder, and to seek better prevention and treatment options.

Simon Mason <swldxer1958@gmail.com> wrote:
> Conclusions More than double the number of previously reported cases of
> mal de debarquement syndrome were identified by this study. The syndrome
> usually occurs in middle-aged women following an ocean cruise. Symptoms
> are often refractory to vestibular suppressants as well as physical therapy.

The full report of this study from the last century can be found here:

<https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/509503>

Generally, note that MdDS “…may be due to a glitch in the brain pathways
involved in learning and adaptation”, which could explain a lot in certain
cases.

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Spike

The most prominent symptoms associated with MdDS are the subjective feeling of rocking, swaying and/or bobbing. Hain and colleagues reported rocking in 93 % of the patients and swaying in 81 % [25]. Other symptoms include disorientation [28], postural instability, imbalance [25], fatigue [19], impaired cognition and kinesiophobia [19]. In one study, the following symptoms were also associated with MdDS (in order of how frequently they appeared): ear symptoms (non-specified), tilting, nausea, headache, jumping vision, blurred vision, perioral tingling, spinning (vertigo), diplopia, vomiting, eye twitches, fuzzy-headed/woozy, pulling/numbness in foot or lower leg [25].

It has to be noted here that these are symptoms that MdDS patients reported when filling in questionnaires from a survey in 27 patients. It does not necessarily mean that all these symptoms are associated directly with MdDS. In the same study, a high occurrence of otological symptoms (fullness, tinnitus, hyperacusis, otalgia and decreased hearing) was found [25], which is not in accordance with the findings in other studies [13].

MdDS is a debilitating condition and therefore, it inevitably has an impact on the psychosocial and economic status of patients suffering from MdDS.

An important factor contributing to the debilitating effect of the disease is the long duration between the start of the symptoms and an actual accurate diagnosis, which can take up to several years [13, 25]. This has also been reported as a catalyst to secondary mood disorders such as depression and anxiety [13].

One study investigated the socio-economic burden in a retrospective analysis in 101 patients and they found that MdDS negatively impacts quality of life (QoL) in these patients and in addition, that it also imposes a significant economic burden [20]. On average, 19 visits to a healthcare professional are necessary before receiving a diagnosis of MdDS [20]. This is consistent with a direct cost of $2997 ± 337 per patient and this does not involve other indirect costs that might be associated, such as for example the loss of an income due to the incapability to work [20]. Up to 31 % of the respondents assessed by Hain reported a change in occupational status due to MdDS [25]. Another retrospective study focused on the stigma and illness intrusiveness of MdDS and they found that MdDS is associated with a high level of intrusiveness as well as reduced QoL [21].

Hain and colleagues also assessed the scores of the Dizziness Handicap Inventory and found an average of 45.6 (SD 20.8) and demonstrated that the DHI score was related to the number of symptoms and to the presence of certain symptoms such as headache and imbalance [25]. The DHI score was also negatively correlated with the disease duration [25].

Simon Mason <swldxer1958@gmail.com> wrote:

> The most prominent symptoms associated with MdDS are the subjective
> feeling of rocking, swaying and/or bobbing. Hain and colleagues reported
> rocking in 93 % of the patients and swaying in 81 % [25].

Sounds like the aftermath of an evening spent in a garage pit swilling home
brew.

The full article can be found here:

<https://link.springer.com/article/10.1007/s00415-015-7962-6>

Generally, note that MdDS “…may be due to a glitch in the brain pathways
involved in learning and adaptation”, which could explain a lot in certain
cases.

--
Spike

Conclusions More than double the number of previously reported cases of mal de debarquement syndrome were identified by this study. The syndrome usually occurs in middle-aged women following an ocean cruise. Symptoms are often refractory to vestibular suppressants as well as physical therapy.

MAL DE DEBARQUEMENT (MDD), literally "sickness of disembarkment," refers to inappropriate sensations of movement after exposure to motion. The syndrome typically follows a sea voyage, but similar sensations have been described following extended train travel, space flight,1 and experience within a slowly rotating room.2 Symptoms usually include vague unsteadiness and disequilibrium or sensations of rocking and swaying, but not rotational vertigo. Mal de debarquement is distinguished from motion sickness, airsickness, simulator sickness, or seasickness (mal de mer) because subjects are predominantly symptom free during the period of motion. Mal de debarquement is distinguished from "landsickness" or postmotion vertigo by duration. Landsickness typically lasts less than 48 hours.3,4 We, like most others reporting on MDD,5-7 define it almost exclusively as a syndrome that persists for at least 1 month. Some authors4 refer to the common short-lived postmotion vertigo as MDD, and the longer duration form as "persistent MDD."

To our knowledge, only 20 subjects with MDD as defined above have been described in the literature.5-7 However, this syndrome is probably more common than the literature7 might lead us to believe. We undertook a patient survey to better define MDD, to understand the etiology or mechanism of this disorder, and to seek better prevention and treatment options.

Simon Mason <swldxer1958@gmail.com> wrote:

> Conclusions More than double the number of previously reported cases of
> mal de debarquement syndrome were identified by this study.

op cit

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Spike

Mal de débarquement (MdD) is a rare otorhinolaryngological disease characterized by a persistent sensation of motion such as rocking, swaying, tumbling and/or bobbing following a period of exposure to passive movement, usually an ocean cruise or other types of water, train, automobile or air travel and less commonly other movements (like sleeping on a waterbed). Onset may be spontaneous in some patients.

Manifestations begin shortly after the stimulus, persist for 6 months to years and may be associated with anxiety, fatigue and impaired cognition. Symptoms are often accentuated when in an enclosed space or when attempting to be motionless (sitting, lying down or standing in a stationary position) and are relieved when in passive motion such as in a moving car, airplane or train.

Simon Mason <swldxer1958@gmail.com> wrote:
> Mal de débarquement (MdD) is a rare otorhinolaryngological disease
> characterized by a persistent sensation of motion such as rocking,
> swaying, tumbling and/or bobbing following a period of exposure to
> passive movement, usually an ocean cruise or other types of water, train,
> automobile or air travel and less commonly other movements (like sleeping on a waterbed).

Sounds like the aftermath of an evening spent in a garage pit swilling home
brew.

Unattributed article can be found here:

<https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=210272>

--
Spike

People often feel a sensation of movement, called Mal de Debarquement, after they have finished boating, surfing or a sea voyage. The symptoms usually disappear within hours, but in some people, and more frequently in women, symptoms can continue for months or years, causing fatigue, insomnia, headaches, poor coordination, anxiety, depression and an inability to work. Known as the Mal de Debarquement Syndrome (MdDS), the rare condition is marked by continuous feelings of swaying, rocking or bobbing.

Simon Mason <swldxer1958@gmail.com> wrote:

> People often feel a sensation of movement, called Mal de Debarquement,
> after they have finished boating, surfing or a sea voyage.

Unattributed article in full here:

<https://www.sciencedaily.com/releases/2014/08/140807163557.htm>

Generally, note that MdDS “…may be due to a glitch in the brain pathways
involved in learning and adaptation”, which could explain a lot in certain
cases.

--
Spike

Mal de Debarquement Syndrome is the persistent sense of motion (often described as a rocking sensation) usually following prolonged exposure to travel (such as being on a boat or long train ride). It generally feels worse while at rest and improves while you’re in motion. MdDS is often accompanied by anxiety and can significantly impact your quality of life due to its constant, unrelenting nature.

What are the Symptoms of Mal de Debarquement Syndrome?

A sensation of rocking or swaying that is present constantly or for most of the day.
Vertigo (or a spinning type of motion) is NOT associated with MdDS
Rocking sensations improve or completely disappear while you’re in motion (walking, driving, on a boat)
Anxiety, panic attacks, depression, and difficulty coping with stress
Difficulty concentrating, brain fog, fatigue
Possibly unsteadiness and difficulty maintaining balance

Simon Mason <swldxer1958@gmail.com> wrote:

> Mal de Debarquement Syndrome is the persistent sense of motion (often
> described as a rocking sensation) usually following prolonged exposure to
> travel (such as being on a boat or long train ride).

Unattributed article in full can be found here:

<https://cornerstonephysio.com/resources/mal-de-debarquement-syndrome/>

It doesn’t add anything to the previous 30 original posts on the topic,
which consist in the main of personal stories.

--
Spike

Mal de débarquement syndrome, commonly referred to as MdDS, is a rare condition marked by a feeling of self-motion and imbalance. Self-motion is the subjective sense that one is moving, despite standing, sitting or lying in an objectively still position. Most often, MdDS patients describe this perceived self-motion as rocking or swaying.

The French phrase “Mal de débarquement” translates to “sickness of disembarkment,” and–as the name suggests–the syndrome typically materializes after disembarking from a moving vehicle. It is experienced most often by those who have traveled by boat, but occasionally occurs after a journey by a plane, train or automobile..

While MdDS typically resolves itself within a few days, it occasionally persists long beyond that point. Because it is so rare–and because MdDS symptoms may be similar to other disorders–anyone experiencing self-motion for longer than a few days should visit an ear, nose and throat (ENT) doctor. The team at Sierra Nevada ENT specializes in properly diagnosing and treating conditions such as Mal de débarquement syndrome.

When individuals are exposed to repetitive, passive motion–such as the rocking or swaying of a cruise ship–for an extended period of time, they may feel unsteady or experience periods of imbalance when returning to land. This is not uncommon, and it typically resolves itself within 24 to 72 hours of disembarkment.

Occasionally, however, this phantom sense of self-motion can last for months or even years. There is evidence that females between the ages of 40 and 60 are at the greatest risk for developing persistent Mal de débarquement. Researchers are still trying to determine why that may be and identify the underlying cause(s).

Most researchers do agree that MdDS is a vestibular disorder. “Vestibular” refers to the intricate network between the inner ear and brain that processes sensory cues and controls balance. As you move, so does the fluid in your ear, sending messages to your brain about spatial positioning. When this process is disrupted, balance problems–vestibular disorders–can occur.

Prolonged MdDS symptoms can negatively impact daily functions, and individuals suffering from this disorder may experience confusion, fatigue, anxiety or depression, in addition to other issues.
What are the Symptoms?

Phantom motion is the most common symptom of Mal de débarquement syndrome. This is typically described as a feeling of rocking, swaying or bobbing. These feelings often lead to imbalance issues or result in an unsteady gait. MdDS may resolve spontaneously or persist over a long period of time.

Symptoms of MdDS tend to:

Occur after exposure to repetitive motion
Improve when moving–e.g. returning to a boat, driving a car or walking
Worsen when sitting or lying still
Worsen when under stress

MdDS symptoms typically do NOT include:

Vertigo
Nausea
Hearing loss

However, symptoms such as vertigo and hearing loss are often associated with other vestibular disorders, so if a patient is experiencing any of these in conjunction with phantom motion or imbalance, it is still important to visit a qualified ear, nose and throat (ENT) doctor.

The experts at Sierra Nevada ENT specialize in vestibular disorders. They can provide a proper diagnosis, which is crucial to understanding the cause of your symptoms and determining an appropriate MdDS treatment plan.

Simon Mason <swldxer1958@gmail.com> wrote:

> Mal de debarquement syndrome (MdDS), which implies concretely “landing
> sickness” in French, is a rare neurologic condition of prolonged
> subjective perception of self-motion from 3 days up to several years that
> occurs after exposure to passive motion, in most cases accompanying sea
> travel, or rarely spontaneously.

Unattributed article, No. 31 of a continuing series, can be found here:

<https://psychiatrist.com/wp-content/uploads/2022/12/22cr03278.pdf>

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Spike

Simon Mason <swldxer1958@gmail.com> wrote:

> The experts at Sierra Nevada ENT specialize in vestibular disorders. They
> can provide a proper diagnosis, which is crucial to understanding the
> cause of your symptoms and determining an appropriate MdDS treatment plan.

Sierra Nevada Ear, Nose & Throat
Sierra Nevada ENT

775.883.7666
775-883-0115 (fax)

No.32 of a continuing series, full article at

<https://www.sierranevadaent.com/>

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Spike

Whether riding in a car or traveling on a train or boat, you encounter passive motion on a daily basis. For some people, the sensation of movement may continue after disembarking.

It can be normal for this feeling of motion to continue for a few seconds or up to 3 days after exposure. However, when the rocking or swaying continues for months or years, it may be due to a condition called mal de debarquement syndrome (MdDS).
What is mal de debarquement syndrome?

MdDS syndrome is a rare disorder affecting the vestibular system that controls your sense of balance. It is sometimes referred to as “land sicknessTrusted Source” when it occurs only for shorter periods of timeTrusted Source.

People with MdDS may feel like they are in motion when they’re not. It usually occursTrusted Source after a person has been on a boat, plane, or an environment where they were exposed to passive motion, for example, a water bed or exercise equipment.

The persistent feeling of rocking and self-vertigo with MdDS can last for months or yearsTrusted Source after the event that triggered it. People who have the syndrome say they feel as if they are walking on a boat or rocking and swaying when they are sitting still.

It’s also possible to develop “mixedTrusted Source” MdDS, also known as “spontaneous” MdDS. This form doesn’t have an initial triggering event. ResearchersTrusted Source think it may be related to migraine disease.
What are the symptoms of mal de debarquement syndrome?

The main symptom of MdDS is a continued feeling of motion, particularly rocking. The feeling is not a spinning dizziness but unsteadiness. It’s important to note that these symptoms happen even if a person’s head is not moving, which may help separate it from other similar disorders.

Other symptoms may include:

feelings of imbalance
fatigue
confusion and brain fog
changes in mood

Symptoms may be more noticeable when a person is sitting or lying still. They may also be triggered by flashing lights, fast motions, and busy visual environments, like grocery store aisles.

Symptoms may temporarily get better when you experience passive motion again, for example when riding in a car.

Simon Mason <swldxer1958@gmail.com> wrote:

> Whether riding in a car or traveling on a train or boat, you encounter
> passive motion on a daily basis.

Unattributed article No.33 can be found here:

<https://www.healthline.com/health/mal-de-debarquement-syndrome>

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Spike

The symptoms of MDDS usually involve a sense of rocking or swaying like the individual is still on the ship. It is normal for any individual to feel this way for a few hours or days after leaving the ship. However, people with MDDS usually have a long-term persistence of the symptoms lasting weeks to months or years.

Symptoms may be experienced while sitting and standing still and sometimes while walking. Symptoms often settle while moving and while in a moving vehicle such as a car or on a boat. In more severe cases, the disequilibrium may affect mobility.

Generally, MDSS symptoms settle within 1–3 months. In some cases, it may persist for longer. MDSS is more common in women.

I HAD MINE FOR 15 MONTHS.