Article nearly four years old:

By Christopher Elliott Staff reporter
Saturday, Nov 16, 2019 5:03 AM

Simon Mason <swldxer1958@gmail.com> wrote:
> For Katy Breuer, the symptoms start as soon as she steps off a cruise
> ship. She feels dizzy and disoriented, can’t eat and can’t find her land
> legs. “It’s debilitating,” says Breuer, an executive coach from Vienna, Va.

> https://www.washingtonpost.com/lifestyle/travel/for-some-unlucky-travelers-disembarkation-sickness-strikes-after-the-cruise-is-over/2019/11/07/c78158e0-fb5a-11e9-ac8c-8eced29ca6ef_story.html

--
Spike

I was on a family holiday in Palma, Mallorca, in July 2001. One weekend we rented a motorboat and went cruising around the coast. I remember we were going fast, crashing over big waves. It was exhilarating, but also a strange feeling. I wondered if this was how boxers feel: punch-drunk.

I began to realise something was wrong only when we got back on land. I was using the washrooms at the marina, and said to my sister-in-law: “Why are the sinks coming up to meet me?” We went for a meal, and I sat in the restaurant wondering why the table was swaying. After I got back to the UK, the sensations of being on the sea increased. It made simple tasks impossible: cooking was a nightmare, all that twisting and turning you do when prepping food.

I went to my GP who told me I hadn’t got “my land legs” back yet, and gave me motion sickness tablets. But the feeling didn’t subside. I felt as if I was constantly walking on a sponge or trampoline, everything bobbing and swaying. It wasn’t dizziness: the room didn’t spin. It was more as if my body had come back to land, while my brain was still at sea. I feel it from the minute I wake up until the minute I go to sleep.

After several more appointments, I was sent for an MRI scan. I remember feeling disappointed when they didn’t find a brain tumour: at least that would have explained things. At one of my last appointments with the ear, nose and throat specialist, he said, “I know there’s something wrong with you, Jane, I just don’t know what.” I felt that the whole world had collapsed. How was I supposed to live with this feeling, not knowing if it was ever going to go away?

I started to do my own research. In February 2002, I got an email reply from the Vestibular Disorders Association in the US to say that, although rare, it knew of a condition called Mal de débarquement syndrome (MdDS). Most bouts last a few days or weeks, but some cases can last years. It can be triggered by any sort of travel – by boat, plane or even train. Hearing the potential diagnosis, I could have cried with happiness; I’d started to think I was going mad.

I got a confirmed diagnosis from the National Hospital for Neurology and Neurosurgery in London. But they told me there is no cure, and all they could do was help me manage my mental health.

Certain triggers would set off particularly bad episodes, such as sitting at a computer for a long time without a break. For the first few years, just walking down a supermarket aisle, with all the visual stimulus coming towards me, could be overwhelming.

I’m not ashamed to admit I was close to suicide. If it hadn’t been for my teenage son, I probably wouldn’t have carried on. I started taking antidepressants, which helped me to cope.

Nearly 20 years on, I’m still living with MdDS. Some people find that benzodiazepines take the edge off. Others suggest hypnotherapy. I’ve heard of all sorts of weird and wacky theories, but nothing has worked for me. I never say that I’ve learned to live with it because that gives the impression I’ve given up on finding a cure, or even some kind of medication to manage the symptoms. I hope something will be discovered within my lifetime.

For me, one way of coping has been to educate people about the condition. I’ve found fellow sufferers all over the world, and have set up a website and UK support group in the hope that no one else has to go through what I did, struggling to get a diagnosis. I’ve even contacted Nasa, who told me it is aware of MdDS in astronauts.

One of the most peculiar things about MdDS is that it’s motion triggered, and yet motion – by car, train, plane or boat – can bring temporary relief. Some chronic sufferers become almost like travel addicts, craving that release.

I’ve continued to travel a lot – from Brunei to Disneyland, where I rode every white-knuckle ride there is, hopelessly trying to jog something back into place in my brain. But so far I’m still at sea.

https://www.theguardian.com/lifeandstyle/2020/dec/04/experience-i-get-seasick-on-dry-land

I’m not ashamed to admit I was close to suicide. If it hadn’t been for my teenage son, I probably wouldn’t have carried on. I started taking antidepressants, which helped me to cope.

Nearly 20 years on, I’m still living with MdDS.

=====WOW - POOR LADY. MUST BE A LIVING HELL.

Simon Mason <swldxer1958@gmail.com> wrote:

> Im not ashamed to admit I was close to suicide. If it hadnt been for my
> teenage son, I probably wouldnt have carried on. I started taking
> antidepressants, which helped me to cope.

> Nearly 20 years on, Im still living with MdDS.

Low blood potassium levels can cause similar symptoms.

Eat more bananas…

> =====WOW - POOR LADY. MUST BE A LIVING HELL.

--
Spike

A mum-of-two told of how a Zumba class triggered motion sickness that has lasted for THREE YEARS.

Desiree Meyer, 35, has mal de debarquement syndrome , a rare condition that sees sufferers experience seasick-like symptoms, such as a rocking sensation, even when standing completely still.

The jewellery designer has battled through ten bouts of the illness since she was a teenager.

Each time, she has no idea how long the episodes will last – and the most recent, which she believes was triggered by doing a Zumba class and then going kayaking, has ruled her life for three long years.

"It's taken over everything," said Desiree, of Ellijay, in Georgia, USA, "The symptoms never let up.

"Simple things like sleeping, reading or holding a conversation are virtually impossible.
"It's like a constant a bobbing or rocking sensation, even when I'm standing still.

"And the off-balance feeling isn't just in the body. It's in the brain as well. It almost feels like being drunk – but I don't even drink."

Desiree's symptoms first began when she was around 17, following a long-haul flight to Germany from her native US.

She recalled "a weird sensation like she was moving all the time" for around a month after the flight, but at the time, had no idea what it was.

After developing it once, she believes she made herself more prone to the condition.

In the years since, she has battled through it nine more times, including after long journeys and the births of her sons Jerome, 15 and Nathaniel, six..

Eventually, she decided to seek medical help - but her journey to a diagnosis was a long one.

Initially, doctors believed she may be suffering from allergies, or that a temporomandibular joint (TMJ) disorder was triggering her symptoms.

"Looking back, I was describing my sensations wrong," said Desiree. "I was telling doctors I felt dizzy, and so they were trying to investigate based on that.

"But that's not really how I feel. It's more a constant feeling of rocking and moving."

In time, Desiree was referred to a neurologist, who finally made the diagnosis of mal de debarquement syndrome .

According to the charity Meniere's Society, long lasting mal de debarquement syndrome is often experienced by middle aged women.

It is still unclear exactly what causes the syndrome, although it's been suggested that it's either a migraine variant, or an issue with the balance areas of the brain, which become unable to readapt to their former state once they get used to a particular motion such as being on a ship or in a car.

Sadly, since her diagnosis, doctors have told her the only thing they can do for her is to send her to a rehabilitation centre, which isn't even guaranteed to work.

"At the centre, they'll try and rehabilitate my vestibular nerves through eye and head exercises," said Desiree.

"The success rate isn't great, but I have to try. If there's anything I can do to stop this once and for all, I will."

As a single mum, Desiree said the disorder has made everyday life a constant battle.

She continued: "I'll have the odd good day, but then things get so bad I can barely leave the house.

"Simple things like grocery shopping, or taking the boys to school – which is an hour's drive away - become really difficult, but I know I have to push through for the sake of my children.

"Driving actually makes things a little better, because my body is catching up with the movement in my brain.

"My sons are very supportive, they step up and help all the time, but I'm sad for them.

"I can't participate in normal parenting activities, like going to watch their football games because crowds and loud noises make my symptoms worse."

Desiree has also completely overhauled her diet in a bid to beat the disorder.

She strictly limits her salt and coffee intake, and ensures she eats lots of fresh fruit and vegetables as well as vitamins.

"I need to eliminate toxins in the body because they make it worse," she said.

"Before my most recent relapse, I used to be really fit and active.

"Then, I went to a Zumba class one day, followed by a kayaking trip. All of that motion – the spinning and twirling – triggered things and my symptoms came back with a vengeance.

"For a while, I was terrified to exercise again, but I'm slowly trying to reintroduce myself to it, and have just started going for walks with the aid of a stick."

Since being diagnosed, Desiree, who cannot even take medicine for her symptoms as it tends to worsen them, has taken to the Internet in search of support.

Through this, she's joined a number of groups and made friends with people who understand what she's going through.

Now, she is bravely sharing her story to raise awareness of the disorder, which she said is in dire need of more research.

"I wish there was more scientific understanding, and more funding to help others going through it," she said.

"For years, I thought I was alone with this, but I've now realised it's more common than I thought.

"When you've been sick for so long, people don't want to be around you anymore, so some of my friendships have suffered.

"But, through online support groups, I've made some great new friends.

"This disorder can drive you insane. You have days where you think, 'How can I go on living my life like this?' but they're always there to help you through and to remind you that, while you might be in a bad place right now, tomorrow could be different."

Simon Mason <swldxer1958@gmail.com> wrote:

> A mum-of-two told of how a Zumba class triggered motion sickness that has
> lasted for THREE YEARS.

[…]

Unattributed article from 28 April 2016:

<https://www.mirror.co.uk/news/real-life-stories/mum-two-suffered-constant-motion-7851072>

--
Spike

Almost any kind of prolonged motion can lead to MdDS, but doctors don’t yet understand what causes the condition. Many researchers believe it is caused by issues with the vestibular system. During passive motion, the vestibular system helps the brain regularly update and process where the body is in space (known as proprioception). This enables a person to maintain their balance even while the surface they are on is moving, such as while on a boat or plane.

Doctors are unsure what causes the brain’s sudden inability to process and adapt in cases of MdDS. Typically, the vestibular system is able to compensate and recognize when passive motion has stopped. Most cases of MdDS occur following extended periods of travel, but length of travel is not believed to contribute to its severity or duration.

People with migraines are more likely to experience mal de débarquement syndrome. The connection between these two conditions has not yet been established.

The most common symptoms of MdDS are persistent sensations of rocking, bobbing, and swaying. Some also experience confusion, balance issues like dizziness, difficulty focusing, and fatigue. In some cases, MdDS can lead to mood changes, anxiety, and depression.

Symptoms of MdDS typically persist for more than 48 hours following a period of travel with prolonged passive motion, such as on a boat or plane. Many experience relief from MdDS symptoms when re-engaging in passive motion such as riding in a car. However, in these cases symptoms typically recur once the passive motion is completed. In some cases, symptoms can worsen following additional passive motion activities.

Simon Mason <swldxer1958@gmail.com> wrote:

> Almost any kind of prolonged motion can lead to MdDS, but doctors don’t
> yet understand what causes the condition.

[…]

Unattributed undated article from

<https://www.americanbrainfoundation.org/diseases/mal-de-debarquement-syndrome/>

--
Spike

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

What Causes Mal de Debarquement Syndrome?

MdDS is viewed as a dysfunction of the vestibular system. Your vestibular system makes up the areas of your brain and inner ear that senses motion and helps you appropriately respond to changes in head position.

When the surface you are standing on moves or shifts, your vestibular system automatically works to keep you feeling stable. If the surface keeps shifting back and forth (i.e. sways), your vestibular system keeps adjusting itself to make you feel stable. Over time, it adapts so well that you can barely perceive the swaying, if at all.

Let’s look at this vestibular adaptation with the classic example of MdDS after a stay on a cruise ship. In this case, when you first step onto the boat, you can feel the movement of the ship as it sways back and forth. You may feel dizzy and nauseous. However, as your vestibular system adapts to the rocking of the boat, you begin to gradually notice less and less movement until eventually you feel as though you’re on solid, stable ground.

At the end of the cruise, when you disembark from the boat, the opposite happens and you’ll notice that the solid ground feels like it is moving. Now it’s up to your vestibular system to get you your “land legs back” and gradually adapt to a stable surface again.

With MdDS, your vestibular system malfunctions and is unable to readapt back to a stable, non-moving surface after it had adapted to a moving surface of the boat.
Why does this error happen to our brain?

We still don’t fully understand the reasons why MdDS occurs but there is evidence of the following:

A similarity to the way the motion sickness works to affect the brain
A possible relationship to a specific type of migraine
Evidence of a role of hormonal imbalances (estrogen and progesterone)

Risk Factors for Getting MdDS

mainly affects women (90%) vs men (10%)
affects those aged 30 – 60 years of age but most commonly in the mid 40s
those that already have issues with motion sensitivity
previous episodes of MdDS

Simon Mason <swldxer1958@gmail.com> wrote:

> What are the Symptoms of Mal de Debarquement Syndrome?

[…]

Unattributed article from:

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

--
Spike

When Cindy Balayewich sailed with her daughter Emily to Alaska last summer, the seven-day cruise rocked her world, she says. The trouble is, nine months later, her world is still rocking.

Ms. Balayewich, 50, says she can't walk down a long hallway or go into a mall without feeling dizzy. Horizons look like they're swaying and big open spaces make her head spin. Because she feels shaky on her feet, Ms. Balayewich had to stop lifting patients in her job as a nurse at BC Children's Hospital in Vancouver.

She went through months of tests before she was referred to the neuro-otology unit at the Vancouver General Hospital, a.k.a. the dizzy clinic. At last, she received a diagnosis: mal de débarquement.

The term - French for "landing sickness" - describes a rare disorder that gives people the illusion of being in motion long after they've stepped off a boat. Unlike the hours or days it normally takes to get back one's "land legs," mal de débarquement may persist for weeks, months and years.

For sufferers like Ms. Balayewich, being in motion offers the only reprieve from the unnerving sense of bobbing and swaying all the time. "I love driving because then I don't feel this way," she says.

Despite increased fatigue and bouts of nausea, Ms. Balayewich is able to work. But others are debilitated by the disorder and become "absolute shut-ins," says Yoon-Hee Cha, a neurologist at the University of California, Los Angeles, and one of the few experts on mal de débarquement.

Dr. Cha is using brain imaging technology to study patients from a set of 250 people with the disorder. Besides sensations of rocking and tilting, patients may develop migraines, mental confusion, extreme fatigue and tinnitus (ringing in the ears), she says. In some cases, "people have a hard time doing things like being on the phone or taking a memo."

Researchers don't know how rare the life-altering condition is or what causes it. But tests suggest it's not the same as vertigo or balance disorders associated with aging or problems of the inner ear, Dr. Cha says.

Rather, it may be due to a glitch in the brain pathways involved in learning and adaptation. After reorganizing neural networks to function on a moving vessel, the brain fails to readapt on firm ground, Dr. Cha explains. "It is definitely a neuroplasticity problem," says Dr. Cha, referring to the brain's ability to form new neural connections throughout life.

Although it can strike adults of all ages, patients tend to be middle-aged women who took seven-day cruises. Other triggers can include riding in an airplane, train, car or high-speed elevator. But some people develop symptoms spontaneously and without recent travel, Dr. Cha says.

There are no effective treatments or cure, says Marilyn Josselyn, president of the MdDS Balance Disorder Foundation - Mal de Débarquement Syndrome in Audubon, Pa.

Certain antidepressants and anti-anxiety medications can take the edge off symptoms, and therapy designed for balance problems may help some people to cope. But medications for other forms of dizziness or motion sickness don't work for people with mal de débarquement, she says.

The foundation has 1,300 members, and occasionally, Ms. Josselyn has heard of people rejoicing when their symptoms went away, she says. But usually, within a few years, "they're back."

Ms. Josselyn, 75, has felt like she's rocking in a boat for 12 years, ever since she took a Russian river cruise. Disequilibrium forced to her to quit her job as a stenographer, she says, and she is plagued by symptoms at all times, "unless I'm sleeping."

Only a handful of studies have been published about mal de débarquement. Since doctors tend to be unfamiliar with the illness, people with severe symptoms have had problems filing for disability insurance, she says. "It's a tough fight."

Brian Clark, a neuromuscular physiologist at Ohio University, says he had never heard of mal de débarquement until September 2010, when he examined an alumnus of the university who had symptoms.

He is now comparing the neuromuscular functions of a dozen patients with mal de débarquement with those of age-matched controls. New findings may shed light on ways to retrain the brains of afflicted people, he says, and help researchers develop a diagnostic test. Until then, "it's completely a diagnosis of exclusion."

Dr. Cha says she's hoping to find a marker for the disorder. She is using functional MRI (which measures blood oxygen changes in relation to neural activity) to look at differences in brain connectivity and positron emission tomography (PET) scans (nuclear imaging) to see whether part of the brain is using too much sugar because it's too active. Since brain scans of patients haven't found any structural abnormalities, she says, "it really has to be a functional problem in terms of how networks of neurons are behaving."

But until the illness is better understood, sufferers are in the same boat as Charles Darwin's grandfather, Erasmus Darwin, who in 1796 became the first physician to document that after long voyages on land or at sea, "the rattling noise of the coach, as well as the undulatory motion, haunts us."

https://www.theglobeandmail.com/life/health-and-fitness/imagine-being-seasick-for-years---on-land/article4264313/

MdDS “…may be due to a glitch in the brain pathways involved in learning
and adaptation”

That explains a lot…

Simon Mason <swldxer1958@gmail.com> wrote:
> When Cindy Balayewich sailed with her daughter Emily to Alaska last
> summer, the seven-day cruise rocked her world, she says. The trouble is,
> nine months later, her world is still rocking.
>
> Ms. Balayewich, 50, says she can't walk down a long hallway or go into a
> mall without feeling dizzy. Horizons look like they're swaying and big
> open spaces make her head spin. Because she feels shaky on her feet, Ms.
> Balayewich had to stop lifting patients in her job as a nurse at BC
> Children's Hospital in Vancouver.
>
> She went through months of tests before she was referred to the
> neuro-otology unit at the Vancouver General Hospital, a.k.a. the dizzy
> clinic. At last, she received a diagnosis: mal de débarquement.
>
> The term - French for "landing sickness" - describes a rare disorder that
> gives people the illusion of being in motion long after they've stepped
> off a boat. Unlike the hours or days it normally takes to get back one's
> "land legs," mal de débarquement may persist for weeks, months and years.
>
> For sufferers like Ms. Balayewich, being in motion offers the only
> reprieve from the unnerving sense of bobbing and swaying all the time. "I
> love driving because then I don't feel this way," she says.
>
> Despite increased fatigue and bouts of nausea, Ms. Balayewich is able to
> work. But others are debilitated by the disorder and become "absolute
> shut-ins," says Yoon-Hee Cha, a neurologist at the University of
> California, Los Angeles, and one of the few experts on mal de débarquement.
>
> Dr. Cha is using brain imaging technology to study patients from a set of
> 250 people with the disorder. Besides sensations of rocking and tilting,
> patients may develop migraines, mental confusion, extreme fatigue and
> tinnitus (ringing in the ears), she says. In some cases, "people have a
> hard time doing things like being on the phone or taking a memo."
>
> Researchers don't know how rare the life-altering condition is or what
> causes it. But tests suggest it's not the same as vertigo or balance
> disorders associated with aging or problems of the inner ear, Dr. Cha says.
>
> Rather, it may be due to a glitch in the brain pathways involved in
> learning and adaptation. After reorganizing neural networks to function
> on a moving vessel, the brain fails to readapt on firm ground, Dr. Cha
> explains. "It is definitely a neuroplasticity problem," says Dr. Cha,
> referring to the brain's ability to form new neural connections throughout life.
>
> Although it can strike adults of all ages, patients tend to be
> middle-aged women who took seven-day cruises. Other triggers can include
> riding in an airplane, train, car or high-speed elevator. But some people
> develop symptoms spontaneously and without recent travel, Dr. Cha says.
>
> There are no effective treatments or cure, says Marilyn Josselyn,
> president of the MdDS Balance Disorder Foundation - Mal de Débarquement
> Syndrome in Audubon, Pa.
>
> Certain antidepressants and anti-anxiety medications can take the edge
> off symptoms, and therapy designed for balance problems may help some
> people to cope. But medications for other forms of dizziness or motion
> sickness don't work for people with mal de débarquement, she says.
>
> The foundation has 1,300 members, and occasionally, Ms. Josselyn has
> heard of people rejoicing when their symptoms went away, she says. But
> usually, within a few years, "they're back."
>
> Ms. Josselyn, 75, has felt like she's rocking in a boat for 12 years,
> ever since she took a Russian river cruise. Disequilibrium forced to her
> to quit her job as a stenographer, she says, and she is plagued by
> symptoms at all times, "unless I'm sleeping."
>
> Only a handful of studies have been published about mal de débarquement.
> Since doctors tend to be unfamiliar with the illness, people with severe
> symptoms have had problems filing for disability insurance, she says. "It's a tough fight."
>
> Brian Clark, a neuromuscular physiologist at Ohio University, says he had
> never heard of mal de débarquement until September 2010, when he examined
> an alumnus of the university who had symptoms.
>
> He is now comparing the neuromuscular functions of a dozen patients with
> mal de débarquement with those of age-matched controls. New findings may
> shed light on ways to retrain the brains of afflicted people, he says,
> and help researchers develop a diagnostic test. Until then, "it's
> completely a diagnosis of exclusion."
>
> Dr. Cha says she's hoping to find a marker for the disorder. She is using
> functional MRI (which measures blood oxygen changes in relation to neural
> activity) to look at differences in brain connectivity and positron
> emission tomography (PET) scans (nuclear imaging) to see whether part of
> the brain is using too much sugar because it's too active. Since brain
> scans of patients haven't found any structural abnormalities, she says,
> "it really has to be a functional problem in terms of how networks of
> neurons are behaving."
>
> But until the illness is better understood, sufferers are in the same
> boat as Charles Darwin's grandfather, Erasmus Darwin, who in 1796 became
> the first physician to document that after long voyages on land or at
> sea, "the rattling noise of the coach, as well as the undulatory motion, haunts us."
>
> https://www.theglobeandmail.com/life/health-and-fitness/imagine-being-seasick-for-years---on-land/article4264313/
>

--
Spike

Mal de debarquement syndrome frequently develops after a cruise or water travel. It can also develop after:

Air, train or automobile travel
Riding an elevator
Walking on docks

Although most cases of MdDS occur after an episode outlined above, some cases appear without a motion event. Secondary factors that can cause your symptoms to reappear include:

Stress
Fatigue
Flickering lights
Moving fast
Being closed in
Playing video games

Risk factors for mal de debarquement syndrome

Although mal de debarquement syndrome can affect men and women of all ages, it is more prevalent in women between the ages of 30 and 60.
Symptoms of mal de debarquement syndrome

If you have mal de debarquement syndrome, you may feel like you are constantly rocking, swaying or bobbing without a reason to feel this way.

Secondary symptoms of MdDS may include:

Depression
Feeling confused or having anxiety
Fatigue
Difficulty focusing

Symptoms may subside when riding in a car or a train, but they may come back when you stop moving.
Diagnosis of mal de debarquement syndrome

Mal de debarquement syndrome is a rare condition that may take time to diagnose. In order to rule out other conditions, your doctor may order the following tests:

Blood tests
Hearing test
Brain scan
Nervous system exam

Patients who have experienced symptoms for more than a month without any clear diagnosis may be diagnosed with mal de debarquement syndrome.
Treatment of mal de debarquement syndrome

If you are younger, symptoms associated with mal de debarquement syndrome may go away on their own. For other patients, mal de debarquement syndrome is challenging to treat.

Treatments may include:

Brain stimulation therapy — new therapy that uses electrical signals to transforms how the brain works.
Medications — used to treat secondary symptoms such as depression, anxiety and insomnia may be effective in some cases.
Vestibular rehabilitation — exercises that help you feel steadier on your feet.
Lifestyle changes — exercising, managing stress and resting can help relieve symptoms.

ALL USELESS.

Simon Mason <swldxer1958@gmail.com> wrote:
> Mal de debarquement syndrome frequently develops after a cruise or water travel.

> Treatments may include:
>
> Brain stimulation therapy — new therapy that uses electrical signals
> to transforms how the brain works.
> Medications — used to treat secondary symptoms such as depression,
> anxiety and insomnia may be effective in some cases.
> Vestibular rehabilitation — exercises that help you feel steadier on your feet.
> Lifestyle changes — exercising, managing stress and resting can help relieve symptoms.
>
> ALL USELESS.

MdDS “…may be due to a glitch in the brain pathways involved in learning
and adaptation”

That explains a lot…maybe while those treatments proved useless in your
case.

For example, Brain Stimulation Therapy means you need a brain to stimulate.

--
Spike

>
> Treatments may include:
>
> Brain stimulation therapy — new therapy that uses electrical signals to transforms how the brain works.
> Medications — used to treat secondary symptoms such as depression, anxiety and insomnia may be effective in some cases.
> Vestibular rehabilitation — exercises that help you feel steadier on your feet.
> Lifestyle changes — exercising, managing stress and resting can help relieve symptoms.
>
> ALL USELESS.

There is no "cure" - all futile.

Simon Mason <swldxer1958@gmail.com> wrote:
>>
>> Treatments may include:
>>
>> Brain stimulation therapy — new therapy that uses electrical signals to
>> transforms how the brain works.
>> Medications — used to treat secondary symptoms such as depression,
>> anxiety and insomnia may be effective in some cases.
>> Vestibular rehabilitation — exercises that help you feel steadier on your feet.
>> Lifestyle changes — exercising, managing stress and resting can help relieve symptoms.
>>
>> ALL USELESS.
>
> There is no "cure" - all futile.

MdDS “…may be due to a glitch in the brain pathways involved in learning
and adaptation”

‘Glitch in the brain’ might give you a clue as to why the cures failed.

--
Spike

Mal de Debarquement, which is French for “sickness of disembarkment”, is a common feature of many sea-travellers who return to land and feel a prolonged sense of illusionary motion or “rocking”.. Normally, this “sea-legs”sensation will subside within days. However, for some people the sensation continues for more than 1 month, at which point it has become chronic, and may be titled Mal de Debarquement Syndrome (MdDS).

MdDS was first mentioned in 1881 yet only described clinically in 1987. It is a rare disorder, predominantly in females of ages 40-50 years old, and refers to the false perception of movement, usually as an aftereffect of motion, such as travelling on a boat. MdDS can be classified as motion-triggered or spontaneous, which is non-motion triggered.

One theory around the cause of MdDS is the theory of VOR (vestibulo-ocular reflex) maladaptation. The VOR pertains to the ability to maintain a stable image whilst the head is moving. It is thought that whilst the brain’s VOR is able to adapt to motion, such as the motion of a boat, it is sometime unable to re-adapt back to normal when returning to land. It is thought that this lack of re-adaptation results in MdDS.
Symptoms of MdDS include:

Gravitational pull
Visually-induced dizziness
Anxiety
Constant sense of self-motion, with fluctuating symptoms
Migraine
Photophobia
Depression

When testing for vestibular dysfunction, it is common that MdDS sufferers will exhibit NORMAL findings on the typical vestibular test battery. Essentially, everything seems normal, but the symptoms are there. One important diagnostic finding in MdDS is that symptoms often feel better during passive motion, for example, when moving in a car. If symptoms are not better during passive motion, it is possible that the person is suffering Persistent Postural Perceptual Dizziness (PPPD).

Science is currently investigating the role of the female hormones in MdDS due its high prevalence in females of ages 40-50 years old, with researchers showing particular interest in estrogen.

There is evidence for optokinetic therapy for MdDS patients, which involves exposure to a visual stimulus in the form of moving lines. The graduated exposure can improve postural stability and the reduce the perception of movement, with the theory being that the visual stimulus during a head-roll promotes re-adaptation of the VOR.

Simon Mason <swldxer1958@gmail.com> wrote:

> Mal de Debarquement, which is French for “sickness of disembarkment”, is
> a common feature of many sea-travellers who return to land and feel a
> prolonged sense of illusionary motion or “rocking”.

[…]

Unattributed article from

<https://brainbalanz.com.au/conditions/mal-de-debarquement-syndrome/>

--
Spike

The ceaseless operations of these information channels help us negotiate each leg of our daily travels. Working together, they let us know when we arrive at our destination and enable us to stop and exit the vehicle. But what if this this complex system fails to recognize an end to the motion? It’s a disconnect that’s all too real for people who develop mal de débarquement syndrome (MdDS), a sickness of disembarkation in which patients feel that they’re still in transit—that they’re never standing on solid ground.

The feeling may be at least somewhat familiar to a lot of us. For example, I recently had to steady myself on a railing after stepping off a water taxi. I could still feel the water swelling beneath my feet even as I walked on dry land—a sensation colloquially known as “sea legs.” As is typical with sea legs, my symptoms were non-pathological and subsided after a few minutes. In mal de débarquement syndrome, however, the feeling of instability doesn’t go away. Instead, it continues relentlessly—in some cases becoming so debilitating that it interferes with work, family life, even basic activities of daily living.

Simon Mason <swldxer1958@gmail.com> wrote:

> The ceaseless operations of these information channels help us negotiate
> each leg of our daily travels.

The website that published the longer article
from which this excerpt was taken,can be found at

<https://leader.pubs.asha.org/do/10.1044/leader.FTR2.26122021.46/full/>

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

--
Spike

Mal de débarquement syndrome (MdDS) — which means, “sickness of disembarkation” — is a rare condition that makes you feel like you’re moving, even when you’re not. “Disembarkation” is a word to describe getting off of a boat or aircraft. This can cause a change in your stability or balance.

MdDS commonly occurs after boating or sea travel, though it can happen after air travel, extended land travel and even sleeping on water beds. In some cases, MdDS can occur after non-motion events (like surgery or childbirth), or for no known reason (spontaneous mal de débarquement syndrome).

MdDS is a vestibular disorder, meaning it affects your body’s balance system. Vestibular disorders typically originate in your brain or inner ear. Experts believe that MdDS has to do with your brain’s ability to readapt to your surroundings once unfamiliar movement (like sailing on the water) stops.
Who does MdDS affect?

Anyone can get MdDS, though 85% of cases affect women and people assigned female at birth ages 30 to 60. MdDS is also more common in people who get migraines.
How common is MdDS?

Mal de débarquement syndrome (MdDS) is rare. Some studies suggest that approximately 150,000 people in the United States have the condition.
Symptoms and Causes
What are the symptoms of mal de débarquement syndrome (MdDS)?

MdDS symptoms typically include:

Rocking, swaying or bobbing sensations.
Unsteadiness.
Balance issues.
Confusion.
Anxiety.
Depression.
Brain fog.

Simon Mason <swldxer1958@gmail.com> wrote:

> Mal de débarquement syndrome (MdDS) — which means, “sickness of
> disembarkation” — is a rare condition that makes you feel like you’re
> moving, even when you’re not.

Article url:

<https://my.clevelandclinic.org/health/diseases/24796-mal-de-debarquement-syndrome-mdds>

> Depression.
> Brain fog.

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

--
Spike

When you head out to sea on a cruise ship, your brain and body have to get used to the constant motion. It’s called “getting your sea legs,” and it keeps you from crashing into a wall every time the ship bobs up or down.

When you get back on shore, you need time to get your land legs back. That usually happens within a few minutes or hours, but it can take up to 2 days.. With mal de debarquement syndrome, though, you can’t shake the feeling that you’re still on the boat. That’s French for “sickness of disembarkment.” You feel like you’re rocking or swaying even though you’re not.

It can happen to anyone, but it’s much more common in women ages 30 to 60. It’s not clear if hormones play a role.

People who get migraines may be more likely to get it, too, but doctors aren’t sure how the two conditions are linked.
What Are the Symptoms?

Mainly, you feel like you’re rocking, swaying, or bobbing when there’s no reason for it. You might feel unsteady and even stagger a bit.

Other symptoms include:

Anxiety
Confusion
Depression
Feeling very tired
Having a hard time focusing

Your symptoms may go away when you ride in a car or train, but they’ll come back when you stop moving. And they can get worse with:

Being in a closed-in space
Fast movement
Flickering lights
Stress
Tiredness
Trying to be still, like when you’re going to sleep
Intense visual activity, like playing video games

What Causes It?

It happens most often after you’ve been out on the ocean, but riding in planes, trains, and cars can lead to it, too. It’s even been caused by water beds, elevators, walking on docks, and using virtual reality..

While almost any kind of motion can cause it, doctors don’t know what’s really behind it. In most cases, you get it after a longer trip. But there’s no tie between the length of your trip and how bad the symptoms are or how long they last.

Simon Mason <swldxer1958@gmail.com> wrote:

> When you head out to sea on a cruise ship, your brain and body have to
> get used to the constant motion.

Unattributed article can be found here:

<https://www.webmd.com/brain/mal-de-debarquement-syndrome>

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

--
Spike

I call this “Floating Away,” as I am constantly feeling that I am floating or bobbing in water, or floating on clouds. I have had MdDS three separate times, with my current episode occurring right now. I am on the 6th month of this episode.
Floating Away, hand-drawn illustration by Alexis Dolgoff. “The calendar and squiggly lines represent the anxiety and mental chaos due to how long I have suffered with this condition. Getting through each minute, each day, each month. Always wondering each day, when will it finally go away? While I try to maintain a calm mind set with uplifting thoughts, meditation, and vagus nerve stimulation for positive neuroplasticity, it is still extremely hard to deal with the anxiety and mental destruction that MdDS creates.“

I am a Doctor of Physical Therapy and I have been writing a medical book to go into details of all vestibular disorders but especially MdDS and my entire experience with it. The whole truth of it. My hope is to not only increase the recognition of MdDS but to also bring knowledge, comfort and strength to those suffering with MdDS.

I am grateful for this opportunity to be creative and express what I feel on paper, since putting it into words is sometimes so incredibly difficult. ~Alexis Dolgoff, DPT

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