5 Things You Should Know About Mal De Debarquement Syndrome

There is not a lot of information out there about Mal de Debarquement syndrome, or MdDS — and for good reason. The neurological condition, which causes dizziness, instability and significant balance issues, only affects a small percentage of the American population, though the exact number remains unknown. That said, MdDs can have long-term effects.

According to Mighty contributor Lindsay Gilbert, MdDS impacts every aspect of her life. “My illnesses are always with me. There is not a second that I feel relief from the motion, the nausea, the brain fog or the chronic pain, [and] some days I’m ‘out to sea’ and the rocking is so intense that any movement will cause my nausea to take over. These days I reside in my bed.”

The reason for these symptoms? This condition causes extreme and long-lasting dizziness, unsteadiness, rocking, bobbing, nausea and vomiting. And while MdDs only affects a small number of people, anyone who has experienced brief bouts of feeling in motion even when you’re standing still.

Here are five things you should know about Mal de Debarquement syndrome.

1. Mal de Debarquement syndrome affects women more frequently than men.

While the causes of MdDS are unknown, there are a few constants when considering who the condition impacts. Women are more likely to be diagnosed with Mal de Debarquement syndrome, particularly those aged 30 to 60. Sea travel is a common precipitating event, and flickering lights and fast movements can also exacerbate this condition. They can (and, on some occasions, do) trigger flare-ups and episodes, but are not known to cause MdDS.

2. Mal de Debarquement syndrome and vertigo are related disorders.

While the symptoms of MdDS are similar to benign paroxysmal positional vertigo and Meniere’s disease — a disorder characterized by periodic episodes of dizziness, tinnitus, hearing loss and a sensation of fullness or pressure in the ear — there are differences. According to NORD, the predominant symptoms of MdDS are dizziness, instability and the persistence of a sense of motion and rocking. Patients often feel like they’re moving even when they’re completely still. Patients with MdDs may also have symptoms such as fatigue, mood changes, imbalance and nausea.

3. Mal de Debarquement syndrome can be hard to diagnose.

Due to the rarity of Mal de Debarquement syndrome, there is no one test that can diagnose MdDS, so a detailed medical history is important. Your doctor will likely order a series of tests to eliminate other related conditions, including a hearing test, vision test, bloodwork or a scan of the brain. According to the National Organization for Rare Disorders (NORD), those with MdDs are more likely to have persistent symptoms after a flight or boat ride and a vestibular function test to check for ear-related inner balance issues is often inconclusive.

4. There is no known cure for MdDS but you can treat it.

Even though Mal de Debarquement syndrome doesn’t have a cure and is difficult to treat, there are a few known therapies that may reduce the symptoms of MdDS. The use of benzodiazepines, like alprazolam (brand name Xanax) and clonazepam (brand name Klonopin), has proven effective in numerous patients, especially at low doses. Vestibular rehabilitation, designed specifically to help those who experience vertigo-like symptoms, has both promise and potential. Several investigational therapies are currently being considered.

Practical tips may also make a difference. For example, you should avoid long car trips or flights when possible. You should try to keep your stress levels to a minimum, and when on your phone or computer, scroll slowly. Rapid movement can exacerbate symptoms.

5. If you’re living with Mal de Debarquement syndrome, there is hope.

Living with MdDS is difficult but not impossible. Many who have this condition live rich and fulfilling lives. You’re also not alone, even if it seems like it because nobody understands or has even heard of your condition. For more information about Mal de Debarquement syndrome — from coping tricks and strategies to finding trained doctors and support groups — visit the MdDS Foundation.