Living with Episodic Mal de Debarquement

In May of 2008, I was 47 and went to a work convention in Las Vegas. There was a long flight from NY to Vegas, and then hotel elevators, and a sightseeing tour in a jeep. But it wasn’t until we took a shuttle bus, with blacked out windows (for the sun) that I got very nauseated and car sick. After a rest and a tour, we took the shuttle bus back to the hotel and took the elevator up to our floor. That is when I noticed the heavily patterned hallway rocking. In the bathroom, I also noticed that it seemed to be rocking like a boat. I went to bed and wondered what was happening. This continued during the flight home, the shuttle bus to the parking lot, and then again the next day when I woke up at home. I couldn’t imagine what was happening. I went to my primary care doctor, and she called it labyrinthitis and told me not to drive.

I remember going back and wanting to jump up and down and throw a temper tantrum because something was WRONG and she was very dismissive about it. I was so miserable, computer work made it worse, I was always nauseated, and I felt like I just couldn’t stand it! By my follow-up visit I had googled “permanent motion sickness” and found the MdDS Foundation and KNEW that was what I had. I felt fine driving or riding in the car. I was referred to an ENT who confirmed what I had, but also said to relax and it would go away on its own. I knew that did NOT always happen. I joined the support group and realized I had it milder that a lot of others. I was miserable, but I could function. I took a brochure to my next appointment, and she refused to give me any benzodiazepine, but did put me on Elavil. My symptoms starting coming and going after about 6 weeks, until they just went away completely. I was free until May 2011, when I moved my son across the country to Wisconsin. I drove the U-Haul, and when I got home I starting using an elliptical machine. As soon as I started rocking and bobbing I realized what a mistake the elliptical machine was. The up and down motion from the machine was too similar to the bobbing motion and my MdDS was back. This time it lasted twice as long. I was diagnosed by a neurologist this time, and given paxil and klonopin. The dreaded benzodiazepine. They definitely worked to slow down the worst of the rocking, but they never took it away completely. When it finally started going away, after 3 months, I was walking 4 miles as often as I could. I don’t know if that helped it go away, but I have always felt it was very random and not related to anything I did. Then it was gone for about 9 months only, and it came back after a day trip driving around visiting antique shops.

No stress, no long trip, just boom, it came back. This time, my symptoms were even milder, but lasted a few months. I was then good until March of 2014, after I went on vacation to Chicago and rode in elevators and drove hundreds of miles. That was my longest bout and it lasted until November, about 9 months. It did return briefly in the spring of 2016 after a trip to visit my son in Wisconsin, but only lasted about one month. As the episodes have come and gone, I now notice that even when I am in remission I have the slightest vestiges of MdDS remaining. I will feel a bit off, or wonky as we call it, but it goes away quickly. It is a limiting condition, as every time you travel, or get on an elevator, you are taking a chance of full blown symptoms returning, and you never know if they will become permanent this time.

I would never chance a boat of any type, or an amusement park ride, or a treadmill or elliptical machine. I haven’t tried flying, although I want to travel. The long car rides are risky, but I am not willing to be confined to the small town I live in 100% of the time. I hope and pray that some day it is better understood, and we can all know that even if we somehow trigger it to return, there is a treatment we can rely on to get our lives back.