Scientists seek answers about Mal de Debarquement Syndrome, a rare condition that evokes a constant feeling of motion
By Philip Barnes
Arianne Daume will never forget what happened on February 28, 2010. Immediately after stepping off a week-long Caribbean cruise, her head was spinning—and it hasn’t stopped since.
Daume has Mal de Debarquement syndrome (MdDS), a rare condition involving a constant feeling of motion. Even when standing still or simply sitting on the couch, Daume feels as though she is bobbing up and down on a raft.
No one is sure what triggers MdDS. No one knows if there are any truly effective treatments. It remains an invisible disease, often mistaken for vertigo or other inner-ear disorders. On average, it takes an MdDS patient a staggering 20 visits to a healthcare provider for a proper diagnosis.
Brian Clark, a physiology professor in Ohio University’s Heritage College of Osteopathic Medicine, aims to cut that number down to one. Two years ago, he received an e-mail from an Ohio University alumna with MdDS. She asked if there were any clinical trials, immediately prompting Clark to dig up anything he could find online.
“I joke that I became an MdDS expert in one day. There was virtually nothing written about it at the time except for a handful of case studies and brief reports,” says Clark, the director of the university’s Ohio Musculoskeletal and Neurological Institute (OMNI).
While a few researchers at institutions such as Northwestern University and UCLA have taken a look at the rare condition—which has received some national media attention in the New York Times, Los Angeles Times, and other publications—the lack of more detailed information piqued Clark’s interest.
After surveying 101 patients from across the United States, Clark and colleagues published a study in the Journal of Neurology detailing the economic and social impact of “persistent” MdDS, when symptoms last longer than one year. The research revealed that the average annual cost of treating each individual with the syndrome is $11,400 to $13,500, comparable or higher than such expenses for Parkinson’s disease.
High treatment costs coupled with inexorable symptoms also took a toll on the participant’s average quality of life score, which measured 59 out of 100, about the same as patients with multiple sclerosis.
“There are huge economic and personal impacts that come with having MdDS,” Clark says. “These people are not commonly eligible for insurance reimbursement or disability because, as it stands, it is not diagnosable.”
For Daume, MdDS symptoms have turned each day into a battle. Her migraines last for days at a time, and when trying to fall asleep, she feels as though she is about to “roll into the ocean.”
Like other MdDS patients, Daume has found her own unique coping methods—she gets a Botox injection every two months to help with headaches and is prescribed antidepressants and klonopin to deal with daily feelings of seasickness and “brain fog.” However, her most vital lifeline doesn’t come wrapped up in a pill.
“If mommy is sick, my two boys know to go to the neighbor’s to play quietly. If I’m crossing a bridge over water, they come back and hold my hand to help me cross. I get sick at the sight of moving water,” says Daume. “My husband understands that I am unable to work—it is a struggle for me to even clean the house. I am blessed to have such great support from my family.”
Interestingly, not all MdDS patients seem to have the same symptom triggers. Janis Kahle, who has spent ten “long” years with MdDS, feels perfectly fine while driving in a car. (That’s a common sign of MdDS, Clark notes.) Yet, she has to wear earplugs in loud places and can’t be around groups of people for very long—their movement sends her into a fit of lightheadedness and nausea. She too is prescribed antidepressants and “tranquilizers” (as she calls them), and she too is lucky to have a solid network of support. But in spite of all of this, Kahle can’t shake her symptoms.
“MdDS totally changes your life,” Kahle says. “It is like you are in a head-on collision, like you are a whole new person in the same body. I want my old life back!”
To address the root cause of physical impairments such as these, Clark and colleagues at Ohio University and Ohio State University conducted a clinical study. Since MdDS occurs mainly in women (the reason for this is unknown), the researchers ran 20 female participants, 10 with MdDS and 10 control patients, through a series of three assessment tests: balance, psychological, and neurophysiological.
Compared to the control group, MdDS patients were much less stable when standing on a platform with one foot in front of the other. Psychological surveys revealed greater fears of movement and feelings of fatigue in participants with MdDS. For the neurophysiological portion, Clark and his team used transcranial magnetic stimulation to stimulate the primary motor cortex, the muscle-controlling area of the brain, in order to assess differences in excitability. This technique is an innovative, non-invasive, painless method that permits scientists to induce an electrical current into the brain.
“It’s like measuring someone’s response if you were to startle them,” says Clark, whose team published the study findings in the Journal of Clinical Neuroscience. “But we didn’t find anything different happening in the motor cortex, although we did observe differences in pathways more localized to subcortical and spinal regions, so we’re thinking it must be somewhere deeper in the nervous system.”
Last summer Clark received grant funding from the MdDS Foundation for a second, more sophisticated series of tests. This time around, the balance assessment will attempt to determine the changes in balance when the visual and vestibular systems are also experimentally manipulated. Additionally, they will examine the effects of MdDS on other changes in the brain, including the visual cortex. Clark hopes this work will better pinpoint the specific area affected by MdDS.
“After these studies, more questions are left unanswered than answered,” he says, “but it’s the first step—and ultimately, it is what you want.”
This article appears in the Spring/Summer 2013 issue of Perspectives magazine, which covers Ohio University research, scholarship and creative activity.