MdDS Makes You Feel Like You’re Still on the Boat

By Yoon-Hee Cha, MD | Published 8/15/2020 21

woman with headache, migraine, stress, insomnia, hangover in casual dress 2048 x 1365

You’re standing in a small boat tied to a dock, waves moving you back and forth, up and down, and side to side. Now, imagine that you feel this way all the time, even without the boat. In fact, you feel like you are still on the boat.

You can’t concentrate. Your head hurts. You’ve never felt so fatigued in your life. You don’t know what’s wrong and you need help.

Your diagnostic tests are all returning as normal. After several months of symptoms, you start to wish that you had a brain tumor just to have an explanation.

Nobody, neither you nor the physician, made the connection that your symptoms started after you returned from that last vacation during which you were in a boat all day.

Welcome to the world of someone with Mal de Debarquement Syndrome or MdDS.

What is Mal de Debarquement Syndrome?

As a neurologist and scientist who studies Mal de Debarquement Syndrome (MdDS), I have heard countless stories just like this.

Today, MdDS is rarely recognized immediately and is often misdiagnosed as Meniere disease, vestibular migraine, motion sickness, or even as a form of psychosomatic illness.

ADD_THIS_TEXT
 

MdDS is literally translated as the “sickness of disembarkment”. It is a disorder of rocking vertigo and imbalance that starts after a period of motion exposure, such as going on a cruise, flying, or even a long car ride.

Unlike short-lived land-sickness, MdDS can persist for months or years.

MdDS is a brain disorder

The MdDS phenomenon is the natural result of the human brain adapting to environmental motion. It is, thus, a quintessential neurological disorder.

How and why the brain gets “stuck” in this entrained state is a question that researchers, including those in my lab, are trying to answer. There is evidence for brain connectivity to spatial processing areas as being altered in MdDS. Some of this can be reversed with treatment.

This island of insight, however, is surrounded by a sea of unanswered questions that we hope to address with continued research.

For now, what we know is that if MdDS symptoms do not resolve within several months, the chances of remission get pretty slim. Medications such as benzodiazepines and some types of antidepressants can ease the symptoms. However, the development of persistent MdDS often leads to other problems, including difficulties with

  • attention
  • emotional control
  • pain modulation, and
  • tolerance to sensory stimuli like light and sound.

Patients with MdDS often spends thousands of dollars on vitamins, diets, hyperbaric oxygen, induced altitude sickness, magnetic bracelets, chelation therapy, and antibiotics. Some have even had inner ear surgery to no avail. If you can name it, a desperate person with MdDS has likely tried it.

What physicians need to know about MdDS

What physicians need to know to distinguish MdDS from other disorders of vertigo or dizziness is that affected individuals feel less of this internal motion when they are actually in motion.

Getting into a car or back on a boat is a temporary reprieve from the otherwise constant symptoms. They remain symptomatic when they are still, such as standing or even lying down. In other words, they are never quite able to rest.

It turns out that this under-recognized and understudied disorder affects thousands of people every year. Those affected typically and middle-aged women, although there are also a fair number of men.

Contributing factors may be triggers for MdDS

Research into MdDS has shown that factors related to the aging brain, hormonal changes, and stress contribute to the vulnerability of triggering an episode. One could take 15 cruises in a lifetime and have no problems, but the 16th one could trigger persistent MdDS.

I once experienced a brief episode of MdDS myself after a flight from Boston to Los Angeles. After a week, it dawned on me that if the symptoms continued, my medical career would be over.

I was lucky that the symptoms eventually abated. The experience, however, showed me that MdDS could happen to anyone, even otherwise healthy, high-functioning, experienced travelers.

Indeed, as more and more people travel for work or leisure in an increasingly interconnected world, recognition of travel-related disorders like MdDS will be all the more critical.

Research funding and awareness of how everyday environmental stimuli, such as oscillating motion, can affect human health are needed in order to prevent disability from disorders like MdDS. We need greater insights into how motion disorders are related to brain dysfunction and especially in how to treat them.

You may also enjoy: The Importance of Women’s Brains in Alzheimer’s Research

The bottom line

Physicians must play a central role in recognizing this disorder by doing the following: 

  • providing counseling,
  • avoiding unnecessary tests, and
  • making appropriate referrals.

Today, many patients go to their physicians with MdDS and get discouraged or derailed. These patients will testify that illnesses without a physical marker are some of the most devastating of human disorders. We need to affirm them as much as we do our patients with heart disease or broken bones.

Though we still need to develop more effective therapies for MdDS, we can at least lay a foundation for recovery by first giving the patients an identity.



[EDITOR’S NOTE] Additional reading from the scientific literature on MdDS

Cha Y, Cui Y, Baloh R. Comprehensive Clinical Profile of Mal De Debarquement Syndrome. Frontiers in Neurology (May 2018) Vol 9, article 261. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5950831/

Canceri J, Brown R, Watson S, Browne C. Examination of Current Treatments and Symptom Management Strategies Used by Patients With Mal De Debarquement Syndrome. Frontiers in Neurology (Nov 2018) Vol 9, article 943. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6240763/

Van Ombergen A, Rompaey V, Maes L, et al.nMal de debarquement syndrome: a systematic review. J. Neurol. (2016) 263:843-854. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4859840/

 



First published Aug. 16, 2017, it has been medically reviewed and updated for republication on Aug. 15, 2020. 

Tags

Yoon-Hee Cha, MD

Website: http://www.laureateinstitute.org/yoon-hee-cha.html

Yoon-Hee Cha, MD is a Principal Investigator at the Laureate Institute for Brain Research and an Assistant Professor at the University of Tulsa, in Tulsa, OK. She is a leading researcher on the biological basis of MdDS. She received her medical degree from Mayo Clinic College of Medicine & Science, her neurology residency training at the University of California San Francisco, and her fellowship training in neurotology at the University of California Los Angeles.

Comments:

  • I started having vertigo since 5th March. I recognised it as vertigo as I had had once a few years before. I had only seen a doctor 3 days later and started taking betaserc. Somehow the dizziness felt like it was always there although the intensity reduced and a constant feeling of a mild headache with some sort of a presence of a pressure somewhere between the left temple and my left eyebrow. I went to an ENT later and was prescribed imigran and apo amitriptyline. Nothing unusual has happened since taking the imigran but I have been feeling the rocking motion since taking the apo amitriptyline. I thought it was the effect of the apo amitriptyline. Can anyone tell me if the apo amitriptyline causes this rocking motion effect?

  • I’m a 56 year old male, 6″ tall and 260, today was the first time I felt rocking sensation after a few hours boating on the lake, I have felt this way only once before 2 months ago on a long drive. Does high BP have anything to do with this?

  • Wow! This is the very first article I have read that actually nailed my symptoms! I am a very active 58 year old woman and have traveled extensively and been on boats my entire life. I started bio-identical hormone pellet therapy back in March 2019 due to hot flashes, mood changes, etc. Felt like a new person. Fast forward to June 2019 after 1 pellet (1 pellet every 3 months) started getting migraines every 2 weeks or so gradually increasing to almost every day. In September, October and November 2019 went on extensive (4+ hrs) car rides to various locations. In December flew and was on a boat all day and on a jet ski for another day. Came home and ever since feel like I’m still on that boat. First time it ever lasted this long. Migraines still occurring almost every day and I definitely feel this impacting my life. Dr diagnosed vertigo. I am following up with allergist and neurologist exams. I am going off the pellet to see if this helps. Unfortunately, it is timed released and won’t deplete until April 2020. Feel like I’m going to fall all day. Thank you for your research! I will talk to my daughter to see if she experiences any symptoms.

  • Hi, I’m an 18 year old female.
    I have been experiencing similar symptoms to what you have described in this article, for around 4 years. Every time I disembark a plane, boat or long car drives, I get an “up and down, moving boat” sensation as I walk, and it tends to feel worse when I’m inside a building where objects are closer to me than, for example, outside. My symptoms usually persist for a period of time ranging from a few hours to several days.
    I initially thought it was to do with air pressure, as the first time I experienced this was when I disembarked a plane from Australia to Japan. So, I used air pressure controlling ear plugs on the planes, and that usually prevented the symptoms from coming afterwards.
    However, I noticed that I get the same symptoms when travelling between places where the air pressure doesn’t change significantly, on cars and boats. This has made me think twice about air pressure being the cause.
    Also, following my first experience of this, I have had a persistent feeling of “fogginess” or “sensory disruption”. I cannot explain exactly what it feels like, but I have had an MRI scan, Electroencephalogram, seen several ENT specialist, and results have all returned normal. I also have type 1 diabetes and Grave’s disease (hyperthyroidism) and many people around me have suggested that it may have something to do with either one, or both of these disorders, or even psychological. I’ve been thinking about my brain at least every 5 minutes of my life for these past years, and frustration and anxiety just continues to pile up. I can’t explain my symptoms and hence people around me can’t offer solutions no matter how hard they try. I am thankful for the emotional support from friends and family, but somehow I feel so alone. I hope that if whoever is reading this can relate to me, that you feel less alone after hearing my story. Let’s win this fight.

    • I am going through the identical thing. I feel as if I am on a boat rocking up and down for almost 5 months …it came on very slowly during this past summer….but then became an awful burden. I have gone for every test imaginable and am on a diuretic prescribed by my neurologist…..but absolutely nothing helps. I am praying it subsides with time.

    • I have had since July 2019 and symptoms started to get better since I started on Effexor. There’s a Facebook group with many people that have MDDS.

  • I’m a middle aged lady who experienced this a couple of years ago ad thought I had Vertigo – had some medication while on hols and after a few days it went. Just returned from holiday having taken three boat trips and plane home and 4 days on still experiencing the very unsettling motion of rocking while sitting at my office desk. I am hoping this will gradually subside?

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Comment will held for moderation