Trans-Atlantic flight leaves woman with Disembarkment Syndrome

In July 2011, I returned to the U.S. via airplane from a trip abroad. The flight was unremarkable, and I disembarked without an issue, unpacked my things and prepared myself mentally for the return to work. I was a little under the weather on my trip. I had a mild cold and for the first time ever, experienced the joy of spinning vertigo. Needless to say, I wasn’t feeling relaxed and rested. And I was returning to a very stressful work situation. As I sat down in my office Monday morning, I started to feel the heavy-headedness. I got up to walk to the office kitchen, then BOOM, I was listing forward, then to the left. I powered through the day but was alarmed.

I’ll roll quickly through the nightmare of getting to a diagnosis. Went to see a GP who hypothesized labrynthitis, an ENT who wanted to test me for atypical Meniere’s, another ENT who could find no nerve damage or sign of inner ear issues who referred me to a neurologist. A neurologist who felt it might be basilar migraine. I had two MRIs, an ECOG, an EEG, vestibular rehab. I took a series of medications that made me increasingly ill. My symptoms were getting worse and worse, and then migraines started kicking in after two months. By four months after onset, I was unable to work or to care for myself properly.

Thankfully, my family and friends helped me connect with Dr. Zee’s office at Johns Hopkins who, in turn, referred me to a doctor at Mt. Sinai in NYC. The doctor reviewed all my medical documents, did her own work-up and diagnosed me with MdDS. That same day, she introduced me to Dr. Dai and invited me to participate in his research protocol.

When I found out that his approach involved no meds and was non-invasive, I was happy to raise my hand and give it a shot. The protocol involved measuring my perceived and actual imbalance. The first step was to measure my perceived rocking by attaching a sensor to my wrist and using my arm to demonstrate the tempo of my rock. The second step involved standing on a Nintendo Wii board (no kidding) and measuring my actual imbalance as I wobbled around on the board with my eyes open and then closed. The third step involved wearing a pair of goggles that recorded my eye movements while the doctor moved my head gently back and forth.

Dr. Dai took all of these measurements and used them to create a custom “treatment.” I was asked to sit in a chair and to keep my eyes open to view black and white stripes on a wall, while Dai moved my head back and forth. My treatment lasted all of two minutes. Afterward, I was pretty disoriented. After all, I was very sensitive to complex visuals and had been suffering from intense migraines for the past two months. So I had to get my bearings after leaving the chair.

Dr. Dai asked me how I felt and to take a walk down the hallway to adjust. The first thing I noticed was an immediate lifting of head pressure on my right side that had been plaguing me for nearly five months. And though I felt a little out of it, I thought maybe, just maybe, my balance was better. Much better. It seemed kind of miraculous but too soon to declare it a success.

I skipped across Central Park on my way home that day, looking silly but hey, it’s NYC and no one cares there. The relief was noticeable. I walked into the lab at a level 7–8 symptom-wise and left on a level 4.

As the days went on, I felt pretty ill and my symptoms rose. Looking back on it, we think the treatment likely triggered a migraine, like so many other tests had in the past. But eventually things settled. I came back to visit Dr. Dai a month after the first treatment. He put me on the Nintendo Wii board, and my rocking had diminished considerably. My balance was pretty much normal. And when I went to close my eyes and march in place, I no longer drifted significantly to one side.

Dr. Dai’s research “righted” something in my brain. I have never returned to that acute level of symptoms that I was experiencing before diagnosis. I’m not symptom-free, and while I’ve worked with Dai to try to eliminate my residual symptoms, I’m still at a level 2–3 these days. Regardless, Dr. Dai gave me a new lease on life after an incredibly painful and bewildering period.

Today, 2.5 years after onset, I’m debating whether to accept my new normal and build my life around this or to continue to fight for remission. Before MdDS, I had no health issues. I was very active and ran marathons. I travelled internationally quite a bit. I also built and ran tech start-ups for a living. My work and personal life were “always on” as you might expect from someone who lives in the city that never sleeps.

Now I sleep quite a bit. Life has slowed down considerably, and I am no longer working full-time, which is difficult for me to accept. I’ve also left NYC for a sunnier, more laid-back climate.

I think I’m healing albeit very slowly. When I have a “bad day,” it usually means that I have increased pressure in my head, a very jittery gaze, overwhelming fatigue and brain fog. I feel a pulsation on the right side of my head constantly – it never goes away but sometimes it gets “louder.” I have chosen the no meds route because I am so med-sensitive, but I do take valium when traveling or when I’m really feeling rough. I’ve only had three zero-symptoms days since onset and I can’t tell you why they happen, but I can tell you that I was absolutely euphoric when they did. I do gentle flow yoga, which sometimes helps reduce anxiety and improve my energy levels. I’ve also started a new vestibular therapy regimen in the hope that I can re-train my stubborn brain that refuses to unlearn this rocking business.

On the flip side, in the past couple of years, I’ve also managed to run a few (wobbly) races again, travel all over the U.S. and even abroad, spend more time with my family and get engaged to a very supportive gentleman. I know how fortunate I am and credit Dr. Dai with enabling me to enjoy life more fully in spite of my diagnosis.

MdDS has rocked my world. I’ve had to re-evaluate everything and at a certain point, I feel like it’s a bit of overkill on the soul-searching. I’m not sure I’m that much wiser or better for having this condition but I think ultimately, it will help me prioritize what really matters in life – health, family, friends. I’m thinking of all of you friends going through this and wishing us all steadier days ahead.

M.
Trans-Atlantic flight, 2011


To learn about typical and atypical symptoms and the MdDS Symptom Severity Scale, please click here.

The MdDS Foundation encourages research and clinical studies such as the one mentioned here. By publishing this story, no endorsement by the MdDS Foundation is implied. For further information, please read our Medical Disclaimer

Trans-Atlantic flight leaves woman with Disembarkment Syndrome was last modified: August 1st, 2017 by MdDS Foundation

14 comments

Discussion Policy
  1. Toni McOmber

    Dear M. Would you please call me. I need to know some specifics about Dr. Dai’s treatment. My phone number is 000-000-0000. Thanks!

    1. Toni, the Foundation’s privacy policy restricts us from publishing your phone number. If you are a member of our Support Groups, there is much discussion taking place regarding Dr. Dai’s intervention. Links to join either are at the bottom right of the page.

  2. Thomas

    Hello,

    I’m a french male, I’m 28.

    I haven’t been diagnose as Mal de debarquement syndrome but when I read ths stories and symptoms of the patients (on the MdDS foundation website or other forum) I feel I have the same. I got them for 2 years now, since a return flight from Paris to NYC (7-8h). It started 2 days after the landing in NYC, more precisely the afternoon following my visit of Ellis island and Liberty island (so maybe 1h of boat).
    Since that day I’m rocking, I feel walking on a matress… I also have quite often headache and sometimes fullness in the ears.
    I noticed it is worst when I’m in a rush, when I have to look everywhere rapidly.
    The symptoms are less invalidating sometimes but it reapears by kind of what I call crisis (from a week to 2 months).
    It also almost disappear when I drive but when I put my feet back on the floor it starts again.
    My life has changed, I have to do everything slowly, I cannot travel… It’s quite hard somedays.
    I did all the classic tests in France with an ENT, I mean RMI (which was ok), ENG, VNG… without a clear diagnose but I think this syndrome is not well known in France.

    I have seen this study and the associated treatment that is why I’m contacting you. I would like to know if somebody have names of ENT or neurologist in France (or not far) who would be aware of this syndrome and maybe of your study? I would have been ready to come back in NYC to consult you but I’m so afraid to fly now (as it may have given me this syndrome).
    I don’t get exactly how you calculate the frequency of rocking? I did do some optocinetic stimulation with a physiotherapist specialized in vestibular reeducation but it wasn’t done the way you do in your study…

    I would also be happy to talk with people who have the same symptoms.

    Regards,
    Thomas

    1. Aurore Rogez

      Hello,

      I am French, I am 35.
      I have MDDS since 30th Sept 14, after 2 days cruise, the rocking sensation in my head hasn’t gone away. However when i drive and when i am lying down or sleeping, i am back to normal, what a relief.
      I did many tests in France, VNG, blood test, neurologist, at the moment i am going to a vestibular therapist.

      Thomas, if you wish as you are in France, could we please get in contact to see which doctors have you seen in France. I live in the north, in Dunkerque.

      Regards
      Aurore Rogez

  3. Elaine T. Pellerin

    I have been suffering from MdDs for over two years, and went through all the tests mentioned – MRI’s, CT scans, EEG’s, vestibular tests – the whole gamut. The only diagnosis was that I had chronic disequilibrium. Dah! Didn’t take a rocket scientist to figure that one out. I used to have an awful pressure in my head and wanted to drill a hole to let the pressure out. Last summer I visited an osteopath who successfully eliminated the pressure and it has not returned, thank goodness. Also, on the advice of a chiropractor/neurologist, I have been doing simple breathing exercises – breathe in through your nose for 2 seconds and blow out through mouth for 4 seconds. I do this breathing exercise all throughout the day when I am standing, walking, sitting etc. and believe it or not, this is helping. It is so easy to do, so anyone out there can try it. I hope it will be beneficial to some. Don’t expect miracles, but try it… relief won’t come immediately, but repetition over weeks has helped me somewhat.

    Good luck!

  4. Susie

    I pulled the study up but the date and time is expired for the application.

    1. We do not publish email addresses on this site so that our researchers won’t get spammed. The archived study application remains useful as a source for contact information.

  5. Diogo

    Hi, I am from Brazil, 28 years old and 8 months dealing with mdds. I would like to take this opportunity to say that any type of treatment is huge on this condition, not only this type of treatment (which seems to work well for most people), but also the full-remission-treatment [sic], I think they are not mutually exclusive and you have to pursue the best way to improve your well-being. Unfortunately I am in the middle of nowhere since there is not a single specialist here in Brazil. I have just came back from a trip to US and things have gone wild since then. I was already taking klonapin but the return trip had annulled basically every positive effect from those meds. Dr Dai could (should… must!!) “export” this treatment worldwide. I am waiting to get back to the “baseline”. Wish you the best and still looking a way to live this wonderful life.

    1. Please note that there is not yet any treatment that works for most, or even for many. There is also no proven full-remission treatment at this time. The Foundation continues to promote education and research to find an effective and consistent treatment for all suffering with MdDS.

  6. Angela Ghilarducci

    I tried to find this doctor DAI at Mount Sinai in Manhattan and there is no listing of him there? There is no specialty under this disorder there either? I am visiting NYC soon, and wanted to go see him? Does anyone know where to find this doctor?

    1. From the Mt. Sinai team: A formal input procedure has been put in place. People who have or may have MdDS and are interested in having a consultation and/or possibly treatment should contact Zelinette La Paz (212) 241-2179 to start the input process.

  7. aurora

    Thanks for posting this. Your baseline symptoms sound close to mine (add nausea to mine). Wonder how you do while traveling. I still go places, but it takes it’s toll on me

    1. M.

      Hi Aurora, I travel a lot more than I probably should. I generally take valium before the start of the trip (plane, train). And then, I’ll take another valium just before landing for any plane travel that lasts over six hours. My symptom levels usually jump a bit on the day of travel but I can manage them down to baseline with a long walk and a good night’s sleep.

      1. aurora

        Thanks. I’ll look into this. Sleep is major. So, downtime is always a part of my travel plans. However, I don’t get back to “baseline” until sometime after I return home

Leave a Reply

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