Between the Devil and the Deep Blue Sea

To boat or not to boat? That was the question on my mind as summer was fast approaching. Most people said, “Are you crazy? Why would you want to go on a boat?” I probably am crazy, but something about being told I could never go on a boat again made me want to do it even more. 

I furiously searched the internet for advice, finding a strict “no boats ever again” theme. If you have MdDS, it is recommended that you completely avoid boats for the rest of your life. I cried as I considered avoiding boats for the rest of my life. If I had been in remission, I don’t think I would have even been considering going on a boat, but I’d had MdDS symptoms continuously for over a year.  It seemed like if I was going to do it, now was the time.  What if I go into remission and then I can never go on a boat again? What if this is my last chance? 

I continued searching the internet in vain, ending up with more questions than answers.  Has anyone actually ever regressed completely from a motion event while still symptomatic? Am I just fearing and avoiding motion experiences for no reason? Could one boat ride really set me back that much?  Is there any precautions I can take?  Is there a certain length of time that I could tolerate?  What if, somehow, I got off the boat and felt normal again?

I realized the only answer to any of these questions: I don’t know.  No one knows how a boat ride or anything else will affect me.  The only way to find out was to try it.  This curiosity, mixed with a fear of missing out, won out.  I texted my friends, “I’m in!” for the upcoming boat ride. 

Fast forward a few weeks, and it is time to get on the cabin cruiser.  I was fully aware that is was quite possibly the stupidest decision I’ve made in the process of healing. I tried to act cool for my friends, but I was pretty nervous.  Turns out, everyone else was pretty nervous, too, and trying to act cool for me.  I took .25mg clonazepam the night before and another .25mg 30 minutes before stepping onto the boat. 

It was a gorgeous sunny day, the water sparkling blue.  I felt great relief to have an actual, real, true, normal feeling of being on a boat. Being able to move freely and swim and just see things normally and feel normal. It was a beautiful day. I was having a great time with friends. I was so glad I did it.

I forgot about the fear, until it was time to disembark.  Would the world be bobbing harder?  Would my head pressure return?  Would my light sensitivity worsen?

I stepped off the boat on to the dock and walked a bit. I still felt like I was on a boat of course, but it was only a little stronger than my baseline. I was cautiously optimistic that it was a success! As the evening went on and my boat feeling was stronger than usual, I tried to enjoy the moment and push down the worry that I had screwed myself over. Everyone at the table was feeling a bit “on the boat” at dinner, so I hoped after a night of sleep I’d be back at baseline.

I woke up the next morning and I was…. back to baseline as far as I could tell.  The only side effect seemed to be that I was very sleepy, but that might have been from the clonozepam.  In this battle of brain vs. boat, my brain won! Conquering the boat got me thinking… what else should I try while I’m still symptomatic? 

Here are the things I’ve tried, how it went, and some accommodations that helped me.  It is important to note that:

  1. Everyone is different, so you may not have the same reaction as me.  I’m not recommending that anyone do this at all, I’m just sharing my experience.
  2. I had my vestibular migraine type symptoms controlled with cyproheptadine (4mg daily) before trying all of these experiences.
  3. I had a low baseline (1-3) before trying all of these things.  I think most of these would have made me really sick when I had a higher baseline.

If you don’t want to read the whole post, this is the most important thing that I learned: If it makes me motion sick, it is going to make my symptoms worse. If I have a motion experience without feeling motion sickness, any changes in symptoms are usually temporary or mild (or non-existent).

Boats

After this experience I went on 3 other boat rides.  All were on a lake.  For the first two, I took clonozepam, and had no long term uptick in symptoms.  One ride was under 2 hours, and I felt back to normal later that day after a nap. The longer ride took a full night of sleep for me to return to baseline.

I also went boating 2 days in a row, without clonozepam, but with breaks walking on land.  These increased my symptoms that night and then for about a week after (from 2-3 to 3-5).

Riding a Bike (Outdoor)

I went biking for about 30 minutes, and I felt motion sick the whole time.  It was wonderful to be outside, and I enjoyed the ride overall.  I felt higher symptoms after, and they got even higher at work the next day.  After the ride I had intended to try it again, but it ended up taking me about a week to get back to baseline.  For now, no bikes for me.

Riding a Stationary Bike

It’s strange, but when I’m riding a stationary bike I can’t feel any motion sensations (just like a car).  I’ve been riding it a few times a week lately, with no increase in symptoms afterwards!

Kettlebell Swings

If you’ve read my other posts, you might remember that for some reason kettlebell swings seem to be a trigger for me.  I decided to try it again while at a workout class, and after a swing or two I started feeling motion sick.  I stopped right away, but I ended up having higher symptoms for the evening.  I’m glad I tried it, though, because this was when it dawned on my that if it makes me motion sick, I have to stop immediately or deal with higher symptoms.

Electric Scooter

The scooter ride was fun, but had me feeling motion sick immediately.  I didn’t experience an increase in symptoms, just the feeling that I was on a scooter for the next few hours.  It was fun to try, but I don’t think I’d do it again.

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Treadmill

I tried running for one minute, then five minutes.  For the remainder of the day my motion sensations changed direction and were more intense.  I had some higher symptoms for the next few days.  After this experience, I’ve decided it isn’t worth it for me to use a treadmill again.  Luckily, when it is bad weather, I can use the stationary bike now!

Floating Down a Lazy River

I did this a few times with no motion sickness and no increase in symptoms!

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Airplanes

I’ve flown quite a few times since I visited New York to go the Mount Sinai.  I haven’t felt motion sick on the flights (I always make sure to hydrate and sleep a lot the night before).  I flew to NYC without any meds, and remained at baseline.  I have flown up to 5.5 hours taking .25-.5mg clonozepam, without any increase in symptoms afterwards.

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Virtual Reality Ride

I recently attended a fundraiser at Epcot, where our group was directed to ride Soarin’, a virtual reality hang-gliding around the world experience,  before getting on the bus.  I was planning to avoid the ride, but I decided to explain my situation to one of the ride’s staff before writing it off completely. He told me to request special seating for motion sickness (center of the screen, front row), and that the seat didn’t move much, so it would be okay to just close my eyes if I felt motion sick.

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I was nervous leading up to the ride, but it seemed like it wasn’t a big risk since I could just close my eyes.  I really enjoyed the ride, but I only kept my eyes open for short “snapshots” of it.  I did not get motion sick, and I didn’t have any increase in symptoms.

Rollercoaster

And you thought I was crazy for going on a boat?!  If you follow me on Instagram (@lifewithoutlandlegs), you know reading Harry Potter got me through the early months of MdDS.  I went to Universal Studios for an event, and I really, really wanted to experience the Harry Potter Escape from Gringott’s ride, a roller coaster with 4D scenes.  I had my clonozepam in tow, but I was seriously TERRIFIED before getting on the ride.  Usually the motions of a roller coaster are NOT something you want to relive while walking around, trying to sleep, etc.

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I pushed through and forced myself to ride, despite my own better judgement and the list of warnings that all applied to me (i.e. do not ride if you have a neurological disorder, do not ride if you are sensitive to strobes, do not ride if you are prone to motion sickness).  The ride ended up being really fun and exhilarating! I had a huge adrenaline rush partially from the ride, but mostly from conquering my fear!

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I took .25mg of clonozepam afterwards, so I felt pretty good and tried a few more rides that evening.  When I went to bed that night, I felt like I was sleeping on a conveyor belt, but the feeling was gone the next morning.  This was a huge win for me!

Learning My Limits

By embarking on all of these “motion adventures,”  I’ve tested and learned my limits.  Before trying these things, it was parse out what motion events were triggers or not because my symptoms were high all the time from a lot of different factors. Now, I know that the motion sickness itself is the trigger, not the motion event.  Avoid the motion sickness, avoid the uptick in symptoms.

I have always had a huge fear of missing out (FOMO), which I think has actually helped me to push through and live my best life despite having MdDS. I pushed my self to do some of these things because I love a good experiment, but mostly because I didn’t want to miss out on the experience with friends and loved ones.  Even the things that made my symptoms worse were worth it for the experience.

Do I think trying these things has “set me back” or “put me further from remission”?  Probably not.  I honestly think that things I can’t control (weather, hormones, unexpected stress) are the only things that seem to create consistent, long term changes to my symptoms.  The motion sickness is only a short-term trigger, not something that sets me back significantly.

I’d love you hear if you’ve had any motion adventures or if you can relate to anything in this post.  Wishing you wellness and stillness!

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