Landlubber: My Symptoms

Mal de Debarquement Syndrome is truly an invisible illness.  If you didn’t know me well, you wouldn’t know anything was wrong with me. My symptoms are all in my brain, so they aren’t outwardly noticeable.  In the past 4 months, I’ve recovered enough that I can do most of my usual daily activities. It is amazing to me that I can look completely normal on the outside, while my perception of my surroundings is so different from reality.  The best way to help others understand is to describe what I’ve learned about my “new self” on this maiden voyage.

How I Rock:

I feel rocking motions constantly, although some days it can be very subtle.  For the first month and a half, I mostly swayed back and forth. Occasionally I would bob up and down. In mid-September (about 2 months into MdDS), I started to rock back to front and slightly up and to the right.  

In early October, I started to feel other motions that didn’t feel like a boat.  This was hard to get used to at first and pretty disorienting, since I was starting to adapt to the boat feelings.  The new motion sensations, described by my perception of them, include the sensations of:

  • being pushed on from the left while walking
  • walking or sitting on a people mover
  • one foot falling through the floor when walking or standing (mostly standing)
  • walking on uneven ground or up/down imaginary hills or mounds
  • being pulled from different directions

Now, in November, these sensations all intermix and change throughout the day (like a real boat ride).  Sometimes they are subtle and sometimes they are strong (read on to find out why). 

Is this dock moving? Nope, it’s just me!

How I Walk:

I appear to walk normally even though it never feels like I am. On my bad days I bump into the edges of furniture, objects, people, etc. I rock in all of the ways I listed above while walking.  On bad days I also will touch walls or railings, not because I need to, just because it makes me feel more comfortable. I have come to learn that I am stable while walking, I just don’t feel stable.  

Why I Rock Harder Sometimes:

There are some things I have identified that pretty consistently increase my boat and motion sensations.  These include:

  • Strong emotions (positive or negative)
  • Running and other forms of high intensity exercise
  • Stress
  • Lack of sleep or tiredness
  • Weather (rainy or snowy days, change in temperature)
  • Menstrual cycle changes
  • Enclosed spaces (the shower, hallways, stairwells, small rooms)
  • Caffeine

Some things increase the rocking sensations and/or cause nausea (a motion sick or seasick feeling) and migraines. These are:

  • Fluorescent lights
  • Blinking or moving lights (especially when contrasted with darkness)
  • Some blue or colored lights
  • Lights from tech devices and amount of time spent on tech devices
  • Scrolling on a tech device
  • Tracking objects or people in motion with my eyes (especially things that are close up)

I have been sensitive to the fluorescent lights since this started, although it took me a while to figure out that it was a trigger.  In the past 2 months, I feel like my sensitivity to moving or blinking lights has gotten much worse. I get immediately nauseous when seeing them, and if they last long enough they will trigger a migraine.  Extended exposure to these lights also causes fatigue again.

When the motion feelings or migraines get bad, the only thing that helps is rest.  I let myself sleep a lot on the weekends, so I usually feel best on Saturday mornings through Monday.  Most of my symptom triggers are present at work and are unavoidable to a degree (fluorescent lights, stress, lack of sleep, emotions).  So as the work week goes on, I get worse each day unless I get a lot of sleep or quality time away from symptom triggers in the evening.

How I Feel When Actually in Motion:

When I am actually in passive motion (floating, riding on a scooter, on a swing) or in a vehicle (plane, train, boat, etc.), I feel almost normal.  I can drive during the day without issues. When the car stops at red lights, the rocking starts back up and then goes away again when in motion.  I don’t feel safe driving at night. All lights have bright halos that hurt my eyes. The contrast between the dark sky and the brights lights moving, especially car blinkers, make me nauseous and give me migraines. On a boat or floating in a pool, I feel fabulous and like my old self. Unfortunately, these things could worsen symptoms long term.

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I feel almost normal on a kayak. I actually feel better for hours afterwards.

Migraines and Headaches:

For the first month without a break, I had a dull headache in my forehead.  It goes away sometimes now, but is triggered by the same things that trigger motion sensations.  I get pains now in different sides of my head, sharp and dull.  Now lights and screen time are my most frequent migraine triggers.

Fatigue:

When I first returned from my trip, I was sleeping up to 16 hours per day.  I was lucky to be off work for three weeks in August following my trip. I could usually muster up enough energy to go for a walk or attend a social gathering, but if I did too many things in a day, I would get exhausted for the next few days and need more sleep or rest.  As I started getting better, I would go to work for 8 hours, but spend the entire night “recovering” from work. This was really difficult. As the weeks went on, the fatigue reduced little-by-little.  I’m at the point now where I can sleep mostly normal amounts and do most normal activities. About three weeks ago, after a long weekend off of work, I had the first day where I did some cleaning, laundry, and ran errands all in one day.  It was an amazing feeling! I felt like my old self. I have been able to go back to most normal activities since this reduction in fatigue, as long as I avoid my triggers.

Boat Brain:

One of the most difficult aspects of my MdDS to explain is something called “brain fog.” I still have the intelligence and abilities that I had before MdDS, but I’m more forgetful and have difficulty making decisions or figuring things out if I’m not rested.  It reminds me of trying to think with a really bad hangover or after going a few nights without sleep. Tasks that require a lot of working memory are more difficult (like doing math in my head or figuring out directions with a map). Until recently, I would need long breaks after thinking creatively or working on new ideas or plans.  In the first two weeks after returning from my trip, I had significant word-finding issues. This was very strange for me because I’m a speech-language pathologist, and I teach strategies for word-finding issues for my job. Most of the time I’d have to go to sleep before I could think of the word or name that I was trying to come up with.  This went away completely after the first couple of weeks. The reduction in this “brain fog” has been the biggest and best improvement I have made since the symptoms began. I would not have been able to write this blog before the “brain fog” lifted. I was lucky to get through the mental activities required for a workday, and then came home mentally exhausted.  

Waves of Emotion:

When I first started having these symptoms, it was extremely scary.  I had no idea how I was going to continue to live my life. For a while, I was taking things moment by moment, counting down the hours until I could go back to sleep, hoping to wake up normal again.  Before I had a diagnosis, I was worried I was dying of a brain tumor or some strange disease. This caused a lot of crying and panicking. I’m always feeling the motion, so it is hard to stop thinking about it.  I’ve had to miss out on things that I never would have said no to before I was sick, making me feel very sad. Before I found the MdDS Facebook community, I felt very alone, experiencing a reality that no one else could understand. Before the fog and fatigue lifted, I had many days where I was pushing myself just to step out of bed in the morning or do simple chores. Before I figured out my triggers, I felt completely out of control and what I would be capable of doing on any given day seemed unpredictable.  

Changes in your sensory system and not understanding your body anymore causes anxiety.  

Realizing that you are different and that you might never be the same again causes depression. 

I am very, very, very lucky to have supportive loved ones who have tried to understand my new perception of the world, which has helped me get through the tough days.  My recent improvements have made me feel very hopeful and happier. After sharing this blog, it has been easier to talk to people about it, which has lifted a huge weight off of my mind.  This section has been hard to write, I am crying and rocking hard right now! It is all worth it if someone else can read this and feel less alone.

Other Weird Things:

There are lots of other strange, subtle symptoms that I experience.   

  • I get tinnitus (a ringing in my ears) in short bursts throughout the day.  
  • Noises bother me more than they had before.
  • Sometimes patterns (on clothing, carpets, wallpaper, etc.) look very strange, almost 3D.  This is especially disconcerting when walking on patterned carpet. 
  • When I was first figuring out my equilibrium, I had horrible jaw, neck, and shoulder tension.  It returns when my symptoms are high for a long period of time.
  • As my fatigue has recently reduced, I’ve had difficulty sleeping through the night. I’ll usually wake up for a few hours each night and can’t fall back asleep.
  • Navigating crowds feels really difficult and stressful, even though now with experience I’ve realized I’m able to do it. It looks like people or things are coming at me in places like the grocery store.
  • My vestibular system is overly reliant on my vision for input, so when I close my eyes I lose track of where I am. That’s when I am actually unsteady, not just feeling it. I’ve fallen when my eyes are closed. It makes me really nauseous to close my eyes while standing or moving.

Overall, every day is a different mix of sensations.  Most are now predictable, but there are always changes and surprises. 

In my next post, I will explain in more detail some of the things that have made me feel better and helped me manage my symptoms, like connecting with other people who have MdDS, special glasses, and changes in routines.

I’m also planning to write posts about working with MdDS and some more upbeat posts about positive changes that MdDS has caused in my life. I am still planning to keep writing about my experience even if I go into remission.  

Please note that every person with MdDS has a different variation and severity of symptoms, which may or may not include those I mentioned.  I was lucky to have full health before this indefinite boat ride began, which has made it easier for me to continue to function. I am also very lucky to now have enough energy and stamina to be writing this blog.  Many people with MdDS can’t work, walk normally, or complete everyday tasks. My heart goes out to my fellow MdDS warriors who are struggling with these symptoms and many more! To my MdDS crew, how do my symptoms compare to yours? I’m sure there are some things I left out, anything important I forgot to mention?

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.

Anchors Aweigh: Mal de Debarquement Syndrome

Imagine lying down to go to sleep after a day of boating.  You know you aren’t on a boat anymore, but you feel as if your body is still rocking and bobbing with the waves. Typically, it clears up the next morning. But imagine if it didn’t. That feeling sticks around, just as strong as it was when you were on the boat.  

You feel imaginary waves moving you back and forth, bobbing up and down, forward and back, pitching and rolling, every single day. All day long.  Walking, running, standing, sitting… if you aren’t in a vehicle, you feel the imaginary waves.

And now you actually start to see the whole world bobbing and rocking.  The scene in front of you rocks back and forth, up and down, all day long.  You know it isn’t really moving. It can’t be, right? Your eyes seem out of focus and out of sync with the movements of your head.  

Close your eyes, and you’ll quickly realize you have no idea where your body is in space. You can’t walk a few steps or even stay standing with your eyes closed.  

It doesn’t even stop in your sleep.  You wake up in the middle of the night after dreaming of boating on rough seas, only to realize you are lying completely still in your bed.

The only relief you get is riding in a vehicle. Back on a boat, you feel almost completely normal.

When solidly on land, you feel seasick.  Your head hurts constantly. You can’t handle bright lights.  It is hard to concentrate. Your mind feels foggy. You sleep all the time.  When you aren’t sleeping you wish you were sleeping.

You start to panic.  How do you know what is moving and what isn’t?  How do you walk when the ground looks like it is moving underneath you? How do you do normal things when nothing feels normal?  

Will it ever stop?  I don’t know.  I am still waiting to get my land legs. This is my true, literal, actual (although sometimes unbelievable) experience living with Mal de Debarquement Syndrome.  

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My brain liked this boat ride so much, it never left!

Check out this video I made to help you understand the visual symptoms.  You will see the swaying (left to right), bobbing (up and down), and rocking (forward and back, slightly up and to the right) motions similar to what I experience.  If you have MdDS, please beware that this video may trigger symptoms.

Here it is:  Video: Mal de Debarquement Syndrome Visual Experience

Want more information about how it all began?  Check back soon for my next post about the onset of my MdDS.

If you have MdDS, how does this compare to your symptoms and experience?  Let me know in the comments below!

For more information and facts about MdDS, please visit the following links:

MdDS Foundation

MdDS Symptoms – Mount Sinai

Web MD Mal de Debarquement Syndrome

If you are looking for a way to help, please consider donating to the MdDS foundation:

https://mddsfoundation.org/donate/