5 Facts to Know for Mal de Debarquement Syndrome Awareness Month

As the heat rolls in and we spend more days at the pool and beaches trying to cool off, there are a number of people who live with a debilitating illness that leaves them constantly out to sea. June is Mal de Debarquement Awareness Month and an opportunity to raise awareness of how this syndrome impacts those who have received this diagnosis and those who care for and love them. Here are five facts I’ve learned since my MdDS diagnosis six years ago.

1. Mal de Debarquement syndrome is chronic, meaning individuals who experience its symptoms feel as if they are in constant motion.

For me, that motion is most often a bobbing as if out to sea before the waves break. On my high symptom days, I feel as if I’m rolling in the wave break and the bobbing becomes much more intense and my nausea can become intolerable. I experience a high symptom day about once per week. My symptoms also include loss of balance, chronic pain, fatigue, brain fog, nausea, migraines and change of gait. I would fail a field sobriety test without having a drop of alcohol.

2. My head is in constant motion as well.

When sitting or standing, my body sways and my head moves ever so slightly. It is not noticeable to the average person unless you’re watching closely. This head movement impacts my neck muscles, which have tightened to try to counteract the movement. Doctors attribute this motion to neck and shoulder pain, which can cause migraines and chronic pain. My body swaying and loss of balance have impacted my gait. I often refer to my stance as my tripod. My hips are always at least shoulder distance apart and I will stabilize by leaning against a hard surface. This change of gait has caused chronic lower back and hip pain.

3. There are a variety of ways to attack treatment for MdDS.

Many patients choose medication to lower the symptoms. During the past six years with this syndrome, I have found a combination of anti-seizure and anti-anxiety or antidepressant medications to be the best for lowering my symptoms. I also give myself monthly injections to keep my (what used to be up to 17) migraine days at bay. I now use rescue migraine medications to help alleviate the less frequent migraine days. I also use dry needling, physical therapy, and massages to help with the chronic pain. Finally, counseling has been my biggest savior to help me navigate life with chronic illnesses. My therapist allows me to grieve the person I was prior to my chronic illnesses and we work on grounding and meditation to help me find peace and hope following my diagnoses.

4. I experience relief from my symptoms when I’m in passive motion.

Ironically, riding on a boat, flying in a plane, or driving in a car, I feel no additional motion. But when the boat, plane, or car stops, my symptoms skyrocket. When traveling, we often have to build in rest days so I can allow my body to recuperate following passive motion. On rough symptom days, I will sometimes jump in the car and drive a short distance to experience relief from the motion. Much longer than 20 to 30 minutes and my symptoms will exacerbate, but a short trip can give me some much-needed relief.

5. MdDS impacts my entire family.

My husband has taken on more roles around the house in addition to his full-time job as I am unable to work full time due to my illnesses. My kids have had to become more self-sufficient to help me with chores that are difficult on my high symptom days. Here are their thoughts on MdDS in their own words. It has helped make our family who we are and truly appreciate the memories we are able to make together. Here are my three children’s thoughts on this illness in their own words.

“It’s hard for you to get out of bed, but you get up anyway because you love us.” — Jack, 12.

“You always feel like you’re on a boat and dizzy, but you work through it.” — Julia, 10.

“On bad days you throw up, but you’re still beautiful.” –Jenna, 8.

As we celebrate Mal de Debarquement Syndrome Awareness Month this June, and you’re laying by the pool or soaking up the sun on a beach, please remember there are one in 800,000 people in this world who never get to pack up their beach chairs and floaties to leave the ocean. I’m one of them and still bobbing out at sea.