Don’t bother knockin’ if my brain is rockin’

I was thrilled to be able to get the word out via a story in the Washington Post’s health section (reprinted below) about the crazy travel-related illness that I and others suffer from.  It’s called Mal de Debarquement, or MdDS, and is commonly (but not exclusively) triggered by going on a cruise. The main symptom is a constant rocking feeling, like you’re still on the boat. My big news is that I think the disease goddess chose to reward me for writing the story, because my “motion hallucination” seems to have finally dissipated after six months.  Read on if you’re interested in this fascinating blip of the brain, and spread the word so doctors will finally believe us!

Rare disorder makes people feel off balance for weeks or months

By Diane Daniel
Special to The Washington Post
Tuesday, March 16, 2010 

When Claudette Broyles tries to describe to friends how she feels, she likens herself to a balloon on a string, tied to a post.

“I’m constantly rocking and swaying, but the level changes,” said Broyles, 60, of Woodstock, Va. “If I’m having an average day, then it’s like I’m a balloon in a mild breeze. If I’m having a bad day, it’s like it’s really windy.”

I hadn’t heard the balloon analogy before, but I could relate.

This sailing trip in the Virgin Islands triggered my second bout of MdDS, in 2003

Broyles and I suffer from mal de debarquement syndrome (MdDS), an uncommon balance disorder that one researcher describes as “motion hallucination.” For weeks, months or even years at a time, we feel that we are rocking, bobbing, swaying, even though diagnostic tests for balance, hearing and vision show up normal. The name for the illness is French for “disembarkation sickness,” so called because it most frequently occurs after being on a boat.

Of course, many people have experienced the swaying sensations that occur just after a boat trip. But for those with MdDS, that feeling doesn’t let up; it persists with varying degrees of severity, causing everything from clumsiness to the inability to walk without some kind of support.

Just how many sufferers there are is unknown, says neurologist Yoon-Hee Cha, who this year launched a study funded in part by the National Institutes of Health, the first time federal money has been used for research into the syndrome.

“We don’t know how many people suffer from MdDS since many people are not able to get the right diagnosis,” she said. “Until there is more widespread familiarity among physicians, we won’t know for sure.” She isn’t sure who gave MdDS its name, but she believes it was first diagnosed in the late 1980s.

Cha, of UCLA’s David Geffen School of Medicine, uses neuro-imaging to try to identify the location in the brain affected during MdDS episodes, with the hope of finding a treatment and a cure.

“It’s a real disorder, even though patients don’t look sick. It’s still very under-recognized among physicians, so a lot of patients are educating their doctors about it,” she said.

Broyles is going through her fifth round of MdDS in 28 years. Most episodes, she believes, were triggered by boats, but the latest occurred after a turbulent flight from England. The first two subsided within a few weeks, and the other two within six months. Her most recent? It has lasted eight years — so far. The disorder prompted her to move from Fairfax to slower-paced Woodstock and has altered her life in many areas, she said.

As for me, I’m on my third bout in as many decades. This time, my brain has been at sea for half a year.

Mercifully, the symptoms disappear when we’re in motion, so driving is usually a relief. But they worsen in confined spaces — for example in a shower, where we have to hold on to walls and bars to stay steady.

Another sufferer, Marilyn Josselyn, 73, of Audubon, Pa., has had only one episode, but it has lasted a dozen years and counting.

Hers set in after a week-long river cruise in Russia. “When we got back from the cruise, I was rocking in my head and was off balance, and I couldn’t concentrate,” she said.

While I can still push through a work day, both Josselyn and Broyles can no longer muster enough concentration to hold jobs.

Josselyn felt fortunate to not have to fight her way through layers of uninformed doctors, as many have.

“I went to my family doctor, who sent me to a balance clinic. I was lucky because I saw a doctor who had heard of mal de debarquement. A lot of doctors still don’t even believe in it.”

Thanks in large part to Josselyn and her husband, Roger, that is starting to change. In 2003, they started the nonprofit MdDS Balance Disorder Foundation and an associated online support group. Through donations and grants, the foundation is also funding research in hopes of finding a cause and cure for MdDS.

Using the online support group, sufferers, who are often misdiagnosed, are sharing information about symptoms, possible treatments and doctors who are knowledgeable and empathetic about the syndrome.

One of those is David Zee, a professor of neurology at Johns Hopkins University School of Medicine who treats patients with vestibular (inner ear balance) disorders, including MdDS.

“This is one condition where it’s more common that the patients diagnose themselves and then tell the doctor,” he said. “It’s a fascinating disorder where the brain is trying to figure out: Am I moving, or is the world moving?”

Two signs that a patient has mal de debarquement, he said, are if they feel a rocking sensation for weeks or months starting after a cruise and if they’re fine when driving but not when standing, walking or sitting.

“In most cases, the symptoms are so stereotypical that it can’t be anything else,” Zee said. Furthermore, most sufferers are women, many between ages 20 and 50, leading some to believe hormonal levels are involved.

Some sufferers say they have gotten relief from their symptoms by taking clonazepam, a long-acting benzodiazepine used to treat anxiety, but there’s no definitive treatment.

“The good news is that mal de debarquement usually subsides on its own,” Zee said.

Anecdotal evidence suggests that most sufferers feel the rocking for a few weeks to a few months.

Melissa Choate, 32, of Fairfax, fits that description. Her first case of MdDS began three years ago during a week-long Caribbean cruise. Within six weeks, the rocking was gone.

Choate’s second and latest episode, which subsided after seven weeks, started during her honeymoon in Aruba in early January.

“One day we went snorkeling from a catamaran, and the next day I felt the waviness. It was minimal, but later it got worse. For a few weeks, it was like I felt a G-force, where I felt my stomach drop and the sensation of being pulled backward.”

She worries about recurrences and has an appointment with a balance specialist in Baltimore.

“What scares me the most is if you’ve had it once, you’re more susceptible to having it again, and each time it gets a little longer,” she said.

That’s what happened to Broyles, the five-time sufferer, who only recently learned about the online support group.

“It’s amazing how all our stories are alike,” she said. “I feel like I’m not crazy after all, that there are people out there who understand it.”

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13 Responses to “Don’t bother knockin’ if my brain is rockin’”

  1. Kathryn McIntyre Says:

    Thanks, Diane, for a great, informative (and very accurate) description of our disorder.
    I am thrilled to hear your rocking has stopped. We read far, far too many horror stories on the net where people who have had this for years. I really needed to hear someone else say, ‘yes, it does go away’.

    Many thanks.

    • didaniel Says:

      Thanks Kathryn. I, too, am thrilled it went away, but after a recent flight it came back slightly, then vanished, leading me to feel sure it will be back some day. But maybe not. And if it is, so be it. Onward toward a cure!

  2. I love cruises Says:

    I love cruise holidays and, touch wood, don’t suffer from any sort of motion sickness at all. I count myself lucky for that. I would be gutted if I couldn’t cruise regularly for medical reasons. However, I have read in U.K. papers today that there is a lady in the U.K. who has been suffering from mal de debarquement syndrome for the past 9 years. It is so severe at times that it has completely disrupted her life – she has had to change her lifestyle, her working commitments and her daily routine. I never realised that this could be so severe so I decided to set about doing some research on it. Thank you for your very informative blog post here! I hope you remain symptom free!

    • didaniel Says:

      Thanks. As for me, so far so good, even after transcontinental flights and a ferry ride. I assume it will return some day, for some time, but for now, phew!

  3. Peggy Says:

    Thanks Diane, for your information on mal de debarquement syndrome. I went on a seven day cruise after seven hours on land this came upon me and I am still dizzing in the head and everything around me is stationary, wambling all the time, can not focus for long period of time. Reading your blog has given me hope that this does go away.

    • didaniel Says:

      I don’t know how long you’ve suffered Peggy, but it usually goes away. Unfortunately mine returned after a glorious three-month “remission.” Came back based on nothing I can ascertain. Oh well, it was nice while it lasted!

  4. theuphillstruggle Says:

    Thank you for this informative article – but sorry to hear from your last comment that you’re suffering again. Having recently returned from a whirlwind trip to New York, I am suffering from my second bout of MdDS in 4 years. I was so relieved to read in your article that most patients self-diagnose, since that is what I have done, having been told by doctors that I am suffering from viral labyrithitis, despite not actually having the correct symptoms. Last time my MdDS was short-lived. This time it seems to be carrying on for longer. I think its also important to add that its not necessarily just caused by travel upon water. I find that using subways and high-speed, high-rise elevators are my triggers – hence the New York hangover. Good luck with your wobbles x

    • didaniel Says:

      Sorry to hear of yours, too! In my article I definitely mentioned that triggers are not always boat travel and can be quite varied, something I had to try to convince last doc of. I think I finally succeeded. Not going to docs anymore. Just doesn’t matter. I’m still rocking, btw. Just one of those things. Doesn’t stop me, but does bug me.

  5. Susanne Says:

    I have had this syndrome for years, on and off. Being a cruise lover it is very difficult. I just got back from a 12 day cruise with rough seas and am rocking and dizzy almost every day. Today is a milder day. I have had this before and it usually lasts a few weeks. I was sent to a balance center in Phila a few years ago for vertigo and was never given a diagnosis. Maybe it was this all along and not vertigo. I suffered that time for over 6 months. I have tried several meds and nothing has helped except for an ear care med, which only helped slightly. It is frustrating and everyday when I wake up I wonder how dizzy I will feel that day.Hopefully, this time will be short and end soon. My long term hope is for a cure so I can relax and enjoy my cruises.

    • didaniel Says:

      So sorry to hear you’re struggling, Susanne. A cure would be great, though I’m not all that hopeful, at least not in the short-term. Mine came back for no apparent reason and I’ve had it for months now. In fact, I’ve had it most of two years, save for a lovely 3-month break. I’ve finally managed to accept it and take it in stride. That’s easier when it’s not debilitating of course. But it sure is very, very frustrating and does affect my mood/work sometimes, but not always.

  6. Israel Says:

    Hello everyone. I am a 36yr old male. My symptoms, the rocking, swaying, imbalance, dizziness, nausea and brain fog started after a 8 day cruise. It started approximately 7-8 hrs after being on land and gradually got worse. I was a little dizzy the 1st couple of days of boarding but only from time to time then afterwards I was fine and had a great time. Then the nightmare began. It didn’t take me long to realize what was happening once I started feeling sick. I researched my symptoms online after the 3rd day I was still feeling this way. It has been two weeks now. The Dr.s were unaware of Mdds and I had to educate them but fortunately my Physical Therapist is. I started vestibular therapy and clonezephem does help. Its horrible right now I can’t work or barely drive. I believe running on the treadmill 4 times while I was on the cruise helped contribute to this because it was very difficult to do but Iearned to and even so well without holdding on. So I am going to try the treadmill here on land and hopefully this will help reverse the symptoms. Figured it’s worth a try. No more cruises for me I can’t Imagine being this way for years hopefully I can beat this soon! If I do beat this now that I have been warned I will find a healthier way to enjoy my vacations than gambling with my brain. Gd luck to all!

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