The strange and rare disorder that ended my career and quality of life
Marlene van Rensburg, 38, once had it all. She ran a successful business, owned three homes with her husband, enjoyed raising her two young daughters and was very healthy.
Life was good, until she was struck with Mal de Debarquement Syndrome (MdDS), a rare and often life-changing disorder that affects the body’s balance system.
MdDS is French for “sickness of disembarkation”. Go online and you’ll read that most sufferers get it after a flight or a cruise.
Marlene, who lives in Pretoria, was struck with it after a holiday to the Cape in December 2008. She and her daughters spent a day at an amusement park in Mossel Bay, where she accompanied her children on a few rides.
One of them was a swinging boat. Despite feeling dizzy after the first go, Marlene agreed to go on another ride of the boat.
Afterwards “I felt like I was going to die. I felt extreme vertigo, swaying and an off-balance feeling.”
She continued to experience persistent pitching and rolling sensations. It felt like her brain and her body were off kilter.
Doctor after doctor failed to figure out what was wrong with her – she even travelled to Germany to consult a neurologist there, only to be told that she had neck spasms.
When her symptoms persisted, Marlene returned to her GP who referred her to a Dr Botha, a neurologist in Pretoria. His diagnosis of MdDS came as a shock.
That’s the problem with MdDS, says Dr Duane Mol, an ear, nose and throat specialist. There are no tests that confirm it, only tests that rule out other conditions. “MdDS is a diagnosis of exclusion.”
Mol says MdDS has only recently received attention and very little scientific research has been conducted into it.
But it is clear that MdDS is not caused by an injury to the ear or brain, he says. The predominant opinion is that MdDS is a variant of motion sickness.
Some dizziness experts believe that MdDS is caused by a variant of migraine. It’s also believed that it could be genetic.
The disorder seems to be more common in women than in men. Because of this, it may also have something to do with sex hormones, such as oestrogen or progesterone.
MdDS arises usually after a sustained motion experience such as ocean cruises and airplane, train or automobile travel. In a few sufferers, the syndrome appears to be spontaneous and can occur in the absence of a motion event.
For most people who disembark from a ship or long flight, the feeling of “landsickness” is temporary. Once their body and their vestibular system, which contributes to their sense of balance and movement, acclimatises, they find their land legs again.
Unfortunately, in patients like Marlene’s, this feeling of “being on a boat” doesn’t go away.
Their symptoms, which include a persistent sensation of motion such as swaying, tumbling, rocking or bobbing, can linger for weeks, months and even years after the journey or incident that triggered it.
Mol explains that this sensation of motion is often associated with anxiety, unsteadiness, fatigue, difficulty maintaining balance, and impaired cognitive function.
Often, the symptoms disappear when riding in a car or participating in another motion experience, only to return when the motion activity stops.
Because of its rarity, both Mol and Dr Khaleel Ismail, another ENT specialist, say they aren’t aware of any statistics of patients with MdDS in SA.
Mol says he has seven patients with the condition in his practice, of whom three are symptom free.
Experts say that MdDS is frequently misdiagnosed or undiagnosed. The disorder lacks an effective treatment or therapy, and its cause remains unknown.
According to Ismail, the pathophysiology of MdDS is not clear. It may be due to the brain learning that the “world rocks and sways” while on the cruise and then incorrectly predicting the same sensation in response to stimuli when back on land.
“That is why many people may feel the sensation soon after similar situations, but they ‘unlearn’ and get better. Why some people take longer to ‘unlearn’ is not clear,” he says.
Mol says the disorder is primarily diagnosed by using the patient’s history, such as a rocking sensation after prolonged exposure to a boat, and ruling out other disorders that may have similar symptoms. Tests to exclude Ménière’s disease should be done, and if there is a history of plane flight, perilymph fistula (a leakage of inner ear fluid to the middle ear) should also be considered, he adds.
Ismail says that, like any form of imbalance, MdDS is quite debilitating, impacting on a patient’s physical, emotional and social life.
Some of the treatments for the disorder include anti-depressants, certain anti-epileptic medication and anti-migraine treatments. Ismail also suggests vestibular rehabilitation, an exercise programme that helps a sufferer to regain the sense of balance. He doesn’t recommend treating patients with motion sickness medication, as they’re ineffective and may delay compensation.
Marlene was given anti-depressants to relax the brain. Her doctor also suggested changing her lifestyle and advised her to go to gym to help her cope with the vertigo.
She says she has “become disabled due to MdDS”.
She’s not able to read – it makes her dizzy – or watch television. She has trouble working on the computer. She listens to music. Most of the time she lies down flat on the bed, which makes her feel better, but “then you can’t lie down all day”.
Shopping is a major obstacle for her, and she hasn’t bought clothes in the last three years. Her weekly grocery shopping is short and simple. And she prefers to venture out on Sunday afternoons when the shops aren’t hectic. “Extremely busy places makes it worse.”
Having a normal life with MdDS is difficult, she says. Somehow, she has managed to get used to the vertigo, the swaying. She tries to go to the gym as often as possible – despite it being a struggle – to retrain her brain to balance.
She also manages to drive and take her daughters to school, which fortunately isn’t too far. The furthest she can go is 15km.
“But the hardest part of having this disorder is losing a quality of life, my business, my friends and my self-esteem.”
Marlene lost her recruitment agency, which she worked hard for 15 years to build up. She could no longer cope with the interviews, the deadlines or the pressures because her symptoms would get worse.
“I was at the peak of my career. I felt such satisfaction and pleasure in placing people ... I gave up.”
The family’s lifestyle dropped. Their home in Pretoria was sold. Their holiday retreat in Mossel Bay is on the market.
She has no social life. Many of her friends couldn’t relate to what she was going through. They could not understand when she told them that she felt “drunk in my head”.
Even her appearance has slipped. Before she was always impeccably turned out. “Now I don’t wear make-up, I don’t do my hair because an outing to the hairdresser is a mission. I’m a plain Jane. It’s not something I ever imagined.”
It’s also been hard for her husband and daughters. “They see me lying down, the short temper, the depression. And I tend to forget things.”
For Marlene, there is “no light at the end of the tunnel”.
Belonging to a website support group based in Ohio has helped, even though she struggles to stay on the computer. “We’re there for each other, and talk about our day and whether any medication has been found that will work.”
It was a huge relief for her to discover that there are two other people who have MdDS in South Africa,” says Marlene.
“I know then that it’s not my imagination. Knowing that I’m not alone makes a huge difference.”
‘FLIGHTS AND A CRUISE TRIGGERED MY SICKNESS’
Gail Fuller, 67, currently trains and mentors agents for Re/Max real estate company.
My husband and I did a tour of China in September 2011. We flew to Dubai, then Beijing and and then took two internal flights. We boarded a cruise ship and floated down the Yangtze River for seven days and nights.
All this time I was fine except for a bad head cold. The day after our return, I felt like I was still on a ship or a plane that just would not land. The feeling did not go away.
I consulted my GP who prescribed an antibiotic because I was still coughing. Three weeks passed. I was referred to an ENT specialist, Dr Duane Mol. I was sent for an MRI brain scan and a Carotid Doppler test.
After doing lots of tests in his rooms, Dr Mol concluded that I had Mal de Debarquement Syndrome (MdDS). I was amazed and horrified.
I’m on Xanor (tranquiliser) twice a day. I also take a strong Disprin if my symptoms increase during the day. I do vestibular exercises every morning and night.
Dr Mol advised me to join the MdDS support foundation in America. I was amazed to find out that there are 1 600 members on this site. Some have had the condition for 20 plus years, some found the right combination of meds and went into remission and some have had a few months or years free of the swaying and rocking only for it to return.
I am not nearly as active as I once was. I cannot play with my grandchildren as I used to. Often my head feels like it’s too heavy for my body.
But some people are a lot worse off than me. Some have had to stop work. Some are bedridden. It’s unbelievable that nobody has found a cure for this syndrome. Maybe one day some wonderful clever doctor will do so.
‘FOR MOST OF THE DAY, I FEEL LIKE I’M ON A BOAT’
Darien Harrison, 53, from Irene, Pretoria, owns a guesthouse, Dunkelly B&B, in Centurion.
I realised that something wasn’t right with my health in April 2008. I felt very unsteady, like being on a boat in rough seas.
I saw a doctor after two weeks and an ENT specialist after a month. Both diagnosed and treated me for a viral infection. That feeling lasted for three months. Then it went away.
The second episode was after a four-day cruise to Mozambique in November 2009. The sick feeling lasted for five months, and then went away for 10 months.
I decided to go on the internet to read up on landsickness and do a self-diagnosis.
Then I had tests run by an audiologist who was aware of MdDS because her colleague had the sickness. I was diagnosed with MdDs in December 2010.
I was freaked out.
The third episode – milder but, I suspect, now chronic – occurred spontaneously last February. I have it all the time now. For three to four hours a day I am symptom free, and then for the rest of the day, it’s like I’m on a boat.
The symptoms are less severe this time, but it gets to you because it doesn’t let up. You feel grotty. My symptoms are not much more uncomfortable than a cold but imagine a cold that just never goes away.
Some of my symptoms are helped with Benzodiazepines (tranquilisers) such as Valium. I have also done acupuncture and vestibular therapy prescribed by a physiotherapist, but nothing has helped.
I have come to terms with the discomfort of this chronic disorder and now consider it an irritation, but my life carries on the same. I’m able to get on.
TREATMENT AVAILABLE IN SOUTH AFRICA
Although there is no cure for MdDS, there has been some success in managing symptoms through medications and vestibular rehabilitation.
ENT specialist Dr Duane Mol says that most medications that work for other forms of dizziness or motion sickness, such as Antivert, Bonine, Meclizine, Dramamine and Scopolamine are ineffective. But Valium and related medications such as Klonopin are helpful for some people.
He says there is some concern that these medications may prolong the duration of symptoms, but this hasn’t yet been proven.
An antidepressant called Amitriptyline may also be helpful. Occasionally persons with rocking due to other causes respond to one of the SSRI type antidepressants, and this may also be worth considering.
Mol says hormonal medications such as oestrogen or progesterone might be problematic, so it would be worth having a trial of patients going without them.
Recentlyhe’s been told that non-steroidal anti-inflammatory medications such as Celebrex have helped a couple of patients. Also, anecdotally, Phenytoin and Carbamazepine (or Oxycarbamazepine) may be useful in reducing symptoms.
A controlled trial of these medications may be in order if more evidence accumulates.
Mol explains that it is possible that medications taken prior and during boat travel might prevent development of MdDS. Anecdotal evidence suggests that while Antivert and Scopolamine are ineffective, some people can prevent MdDS by taking Valium, Klonopin or Ativan prior to getting on the boat or airplane. But, again, this has not been proven in a research study.
Mol adds that medications which suppress the inner ear or block adaptation to inner ear signals may be useful.
Physical therapy to cope with dizziness and imbalance, mostly head and neck, may also be helpful.