A Shot Across the Bow: My Onset Trip

All I had wanted to do for an entire year was go to Europe. I love going to Europe. The sights are breathtaking!  The history is fascinating! The food and cultural experiences are unforgettable!

I went in July of 2018, elated to finally arrive after months of anticipation. We first arrived in Milan after 10+ hours on planes. That night, laying down to go to sleep, I felt like I was floating.  I remember thinking it was just excitement, lack of sleep, and all the travel. I don’t think this is where my MdDS started, but I think it made me more susceptible to it. I remember thinking I felt great the next day after a full night of sleep.

 

A few days later, we rented a speedboat for 6 glorious hours on Lake Como.

I sat on the bow of the boat all day, watching the water and the breathtaking scenery.

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My view from the bow of the boat in Lake Como, Italy.  It was so beautiful!

I got off the boat that evening, but I never felt like I got off the boat. This was not uncommon for me, so it didn’t seem that weird.

We spent the next day paddle boarding and swimming, so the continuing “boat feeling” still seemed normal. The next day, we flew to Barcelona.

At the time I had no schema for the strange new things I was feeling, but looking back I now recognize the symptoms. I was wrapping my mind around the beginning of MdDS. I made a lot of excuses: it’s hot, I drank too much wine, I’m dehydrated, it’s the melatonin I took, I’m just exhausted, my muscles are tired from walking and swimming, etc.

I was dizzier than I had ever been before. I felt extremely sick after walking down an enclosed staircase. I remember looking at my equally sleep-deprived and dehydrated friends who seemed totally fine, causing me to wonder what was wrong with me.

This staircase was so intense, especially with MdDS!

I tried to explain my strange new feelings to my husband.  I remember saying something like, “I think my feet have started to feel extra sensations.” He looked at me like I was crazy, and I felt crazy saying it. The feelings were so weird.

We flew to London and when we landed I was sure I had come down with some sort of virus. I had a bit of a sore throat, so I assumed I was just getting sick. I figured the weird unsteadiness was part of it. I wasn’t going to let it ruin our trip! So the next day, we decided to go on a boat tour.

When we got off the boat in London, I again realized I still felt the rocking. Walking around the city, I started to see things moving as if I was still on the boat. I asked my husband things like: Are those bricks moving? Do things still look like we are on a boat to you? Is that car parked or moving slowly? What do you mean the bus isn’t driving yet?

I went to sleep, hoping I’d wake up and the feeling would be gone. It wasn’t (but you knew that already). That’s when I first realized I lost my land legs.

August 2018 619
I first realized I lost my land legs while walking around London.

What happened to my brain and body during this trip to cause the MdDS? Much more research needs to be done to fully answer this question. The leading theory is that MdDS is a result of a malfunction of the vestibulo-ocular reflex (VOR), which stabilizes vision during head movements and maintains balance. It’s possible that while I was watching the water and moving with the waves, the boat moved in a different direction and my head moved in another, causing my VOR to fall “out of sync” with my movement. For a more specific and scientific explanation, check out this research article or this more reader-friendly press release.  This theory doesn’t explain why more women are affected than men or the similarities between MdDS and chronic migraines.

It would help people with MdDS, but really all humans, if we had a clearer understanding of the physiology behind the symptoms. Please consider donating to the MdDS foundation, which funds further research in this area.

Donate to the MdDS Foundation

I have weird mixed feelings when people ask me about my trip. I feel like my MdDS is always part of the story even if I don’t talk about it.  A question for my fellow floaters: How do you feel talking about your onset trip?  Let me know in the comments below.

After reading the last post, a lot of readers have asked if I have improved at all since the trip. I definitely have had some hopeful signs! My fatigue has significantly reduced, I can think clearly and concentrate for much longer periods of time, I rarely get dizzy spells, and I have many days where I don’t see things moving. I’ve learned that I’m pretty steady and won’t fall or walk into things too much as long as I keep my eyes open. Things have gotten less scary since I’ve had months to get used to all the strange sensations. The constant motion feeling is always there, although sometimes, for a few precious hours, it gets so low I hardly notice it. Every day is different, but I still have many days that feel just like I described in my first post.  Many people recover completely within in the first six months, but there are some people who have it for years. It can come back again even if it stops for a while.

In my next post, I’ll explain some of my strange symptoms!  Let me know if there are other things you are wondering about when reading, and I will try to add them to a future post.

One thought on “A Shot Across the Bow: My Onset Trip

  1. My MdDS symptoms started towards the end of a 2 week cruise taken last summer.
    The cruise itself was amazing; we lived in the height of luxury. We were both amazed by the service from the staff on board, the entertainment and facilities that were included. Unfortunately towards the end of the cruise I felt very unstable; I kept staggering when we walked down the long corridors, I also felt quite nauseous. I put this down to the rich food, the excessive alcohol and also the last two days which were at sea. It was only when we reached land that these symptoms continued and worsened over the next few days to a point where they have been constant with varying degrees of migraine.
    Whenever we talk about the cruise it is only in reference to my ‘illness’ and not for the superb holiday that we had.

    Liked by 1 person

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