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!

One Year Without Land Legs

After one year without land legs, this is what I know for sure:

It gets better.  It gets easier. Hard to believe, but it really does.  My progress has been very slow. It took months to see notable improvements.  Recovery hasn’t been linear. I still rock, bob, and sway, but day to day I feel good in spite of it.  My light sensitivity is so much better! I got better at adapting. I’ve learned my limits, and I know what I need now to keep my symptoms stable.

The constant motion has become my new normal.  I remember in the early months someone in the MdDS support group told me this would happen.  It was sort of comforting at the time, yet also seemed totally impossible, but it happened eventually. It is amazing what we can get used to.

I had to grieve the loss of stillness.  Like a death, I had to go through all the stages of grief before accepting this as my new normal.  

The stress of constantly trying to avoid triggers triggered my symptoms more than the triggers I was trying to avoid.  For example, worrying about what kind of lights or enclosed spaces I’d be in made my symptoms higher than just relaxing and dealing with the trigger if I encounter it.  I always carry blue-light blocking glasses with me just in case. However, this bit of wisdom does NOT apply what I’d call my “extreme triggers” like cleaning the refrigerator, light shows, or drinking an entire caffeinated beverage, which are among the things I have to completely avoid. 

It takes about a week to get back to baseline after an “extreme trigger” or migraine.  This has been helpful for me to remember when I am going through those “spikes” in symptoms or having migraines.  It does get better and easier again. 

I need to stay active and distracted.  Consistent workouts seems to help stabilize my symptoms.  Physical activity throughout the day helps me manage headaches.  I have to intentionally engage in things throughout the day that make me forget about my motion sensations.  I’ve always done best when I’m around people, and I’ve gotten much better at keeping myself distracted when I’m alone. I think it’s best for me not to log or track symptoms anymore, but it does help to acknowledge progress and improvements!  

Here are the things that I can say with 100% certainty have helped me improve or stabilize my symptoms:

  • Sleeping as much as possible
  • Optokinetic Stripes Treatment and home exercises (at Mount Sinai Hospital)
  • Taking Cyproheptadine daily (antihistamine/migraine preventative)
  • Clonozepam as needed for high symptoms or to prevent a regression
  • Vigorous exercise (although it took me a while to work up to this)

In one year Mal de Debarquement Syndrome has made me more compassionate, less judgmental, more understanding, less of a perfectionist, more appreciative, less anxious about the small stuff, and more accepting. It has changed my perspective on so many things, and as a result helped me learn to focus on what matters most to me. 

My voyage continues and adventure awaits! 

 

Trying to Turn the Tides

After developing some scary new migraine symptoms, I had taken a month off of work to attempt to turn the tides. (If you haven’t read my last post, Ebbs and Flows, yet, read it HERE to catch up.) I was hoping that a break might help me achieve remission or reach it sooner. At the very least, I was hoping to get my migraine symptoms under control or figure out ways to manage better.  These are the things that I focused on and learned in my “recovery month.”

Sleeping In

I had noticed in the past few months that after I slept a lot, my MdDS symptoms would be at their lowest.  I was hoping to use this time off to sleep as much as I possibly could. Being able to finally get the rest I needed was a huge relief!  I slept 9-10 hours per night according to my Fitbit. Before MdDS, my “normal” was 6-8 hours per night. Through journaling my symptoms, I discovered that on days when I woke up to an alarm, my symptoms were significantly higher than if I slept until I woke up naturally.

Optokinetic (OKN) Stripes

Dr. Yakushin had given me home exercises to do based on how I reacted to the stripes during my visit to Mount Sinai (if you haven’t read that blog post yet, read it HERE).  Using a web application, I would enter the suggested settings and move my head while watching the OKN stripes. Depending on which combination of stripes and head movements I performed, my motion sensations would change, and usually improve, after doing the exercises for 30 seconds to 2 minutes.

For the first 2 weeks of the month, I did the OKN stripes only if my symptoms were a 3 or higher.  I realized after some trial and error that the head movement to correct the sway (watching stripes left to right, moving head up and down), was creating nausea/sickness with head movements and difficulty watching TV or other visual movement.  I figured out that it was better to avoid that exercise entirely and only do the side to side head movements (ironically, just as I was doing on my own before visiting Mount Sinai). I stopped doing the stripes after I hit a point where I felt a significant improvement.  I was getting worse on days I tried to troubleshoot the exercises or did them too much. I also learned that if I felt the movements more in my head than in my whole body, the stripes didn’t help.

I got my baseline down to a 1-2 (out of 10) for the last two weeks of the break.  For me, that means I often feel still or don’t notice the symptoms, and they are easier to ignore.

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Technology

My doctor suggested that computer use was likely making my migraine symptoms worse, so I vowed to swear off technology for a month! I suspended all my social media accounts, logged out of email, deleted my blogging app, and avoided computers and phones as much as possible.  

I only had one full migraine during the break, and it happened after I watched TV for 90 minutes without wearing tinted glasses. I was disappointed with myself at the time, but I’m grateful for it now because I learned that I still need to wear tinted glasses.  

At first, it felt great to take a break from social media.  I didn’t have any FOMO when I was doing nothing, and it was freeing not having to keep up with messages or check alerts. Eventually, I really started to miss connecting with people, seeing photos and videos of fun experiences or milestones, and sharing my own fun moments.  Now that my break is over I’m continuing to limit my time on social media. I’m trying to focus on using it for meaningful, positive activity, and not mindless scrolling.

During the onset of my MdDS, scrolling was one of the most difficult things for me. I had to close my eyes if I wanted to scroll on my phone or a computer.  It eventually got better, to the point where I thought it wasn’t an issue for me anymore. Although scrolling doesn’t make me feel immediately nauseous and headachy anymore, I’ve realized it is still one of my top triggera, usually causing a visible sway.  It was easy to identify once my baseline was low. I can maintain my baseline during other phone/computer functions (i.e. texting, typing) as long as I’m using flux and/or tinted glasses and taking breaks. I know I have to take a break when the right side of my face is going numb.  

Heart Rate

At Mount Sinai, I learned that my motion sensations sync with my heart rate.  My resting heart rate decreased 12 beats per minute during the break. I wear a Fit Bit HR all the time, which graphed the improvement.  Because I rock with my heart rate, that means 12 less times I was rocking per minute, which resulted in a feeling of lower MdDS symptoms overall! The relaxation and sleep were really helping!

Exercise

Working out has been a battle for me with MdDS. Different workouts would mess with my symptoms in different ways, so for months I pretty much stuck to yoga and walking. Not having to worry about having to go to work the next day made it easier for me to increase the intensity of the workouts I was doing and try things, like sprinting or lifting heavy weights, that were difficult in the past months. Although my symptoms are significantly higher during and after challenging workouts, I feel so much better once my heart rate goes down. I’ve been motivated to keep working out because of how much better I feel afterwards. Even just a short walk can distract me from higher symptoms and help me feel better once my heart rate goes back to resting.

The Long Haul

At the beginning of my break, I was very hopeful that within the month I would reach remission.  Days later, I wasn’t feeling like I had made much progress since I left NYC. At the time, I was still constantly feeling motion. I have always been a perfectionist, a planner, and a “to do list” type of person.  MdDS had been chipping away at this part of me since day one, but old habits die hard. I was still in constant “doing mode,” and it was hard to live in the moment and not worry about being “productive.” After a few days off, I felt like I was focusing on my symptoms too much without the distractions of work.  

Having this time to reflect, I realized something huge: my MdDS probably isn’t going anywhere anytime soon.  The times in the past that I thought I was close to remission? I wasn’t. I was way off. How could I think this time it would be different? I had been avoiding triggers in order to “get better faster,” but I had no idea if it was even worth it. The stripes exercises help me so much, but odds are they aren’t going to get me back to a perfect “normal.” The truth is, it hasn’t been serving me to try to control my Mal de Debarquement Syndrome.

Coming to terms with all of this made me really depressed at first.  I gave up on trying to stay positive – it wasn’t possible right then. I allowed myself to really feel the sadness. I cried it out for a couple of days. I grieved the loss of a “normal” future. I had always just assumed I could control and plan out my future, but after the past few months I felt I had to make peace with a level of uncertainty.  

After I acknowledged that I’m likely in this for the long haul, I started seeing the upside of acceptance.  It’s easier to be positive about slow, gradual progress when I’m not comparing myself to the “old” me or thinking about how far I have left to go.  

I’ve had some really terrible days on this voyage that I’ll never forget, but I’ve had more good days on the whole. When I look back at events of the past 9 months, I primarily remember the experiences and emotions, not how much I was rocking that day.  

Accepting that the boat feeling is part of me made it easier to enjoy my remaining days off.  It took the pressure off of me to “recover.”

I’m still hopeful about reaching remission someday, but I’m happy to say I’m no longer counting the days until I’m back to “normal.”  My quest now is learning to live a life I love with MdDS.

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Back to Life, Back to Reality

I’ve been back at work full time for 2 weeks now, and the progress I made this month is apparent. I don’t have as much stillness as I had during the last few weeks of my “break,” but I am feeling good.  Everything feels easier. A huge part of it is because my symptoms are lower, but I think removing the stress of trying to “recover” has helped me stay calm in a world full of triggers.

To fully accept my MdDS, I had to face facts that my days are going to be full of triggers, and I can’t live my life avoiding them. I had to let go of the idea that they were prolonging my illness. Even if they are, worrying about avoiding them was definitely stressing me out, which is a trigger in itself! Thanks to my new, lower baseline I can deal with all my common triggers within reason (i.e. I will never clean the fridge again) and with accommodations (special glasses, breaks, clonazepam, extra rest, etc). I think not having the added stress and worry about “trigger avoidance” makes my body better at dealing with the triggers when they appear.

The boat motions still drive me nuts and make things difficult sometimes, but they are mostly tolerable. I still get the pins and needles/tingling/numbness on the right side of my face, but I learned during this break that rest, relaxation, or exercise help me keep it in check. My light sensitivity seems to have improved the most in the past month. I haven’t felt I needed a hat, and I can get by with new low blue lights glasses with just a slight tint. I haven’t had a migraine in a month (knock on wood).

I am really grateful that I have recovered enough to get to a place where I could be accepting of the symptoms I have. I do know there are probably still some rough seas ahead, but I’m a much more experienced sailor now. I am cautiously optimistic that the worst is over now that I have some tools and coping strategies.

 

Please let me know if you are seeing some improvements, however small they may be!  They do add up over time, I think, and we have to celebrate them! Also, I’d love to know if you can relate to anything in this post or if it’s helped you on your voyage!

Ebbs and Flows

Where we last left off I had just come home with a renewed sense of hope after attending treatment at Mount Sinai Hospital in New York City.  I had made improvements, but what really excited me was the idea that remission was within reach. If I could just avoid my triggers for a few weeks, maybe a couple of months, I would be in remission.  After I posted my experiences at Mount Sinai, I got lots of messages from other people who had attended and went into remission soon after. A common thread in almost all the messages was that it took about 2 months.  For most people, the motion sensations gradually reduced until one day, things just seemed normal.

Recovery Ready

I’m a total type-A perfectionist, so I went to work readying myself to create what I hoped would be “ideal” healing conditions.  I was armed with face-wrapping orange glasses and new baseball caps to shield me from the bright lights and screens that always seemed to trigger my symptoms.  I was ready to use all the relaxation techniques I had practiced to keep my heart rate down. If anyone was going to reach remission, it was me! I was going to try to do everything I could to make it happen.

The days the followed were a lot more difficult than I had anticipated. The weather was terrible. Lights looked like they were flickering to me, even wearing all my gear.  I didn’t feel confident in my new hat and glasses look, but I was too scared of a reversion to take them off or switch back to my pink migraine glasses. My days were long, busy, and stressful. I would forget to use relaxation techniques. Most days I was too exhausted to scrounge up the motivation to go to yoga class or walk in the icy weather.  I was bone tired all the time and needed more sleep than usual. After a day at work I needed sensory deprivation, even watching TV seemed overwhelming.

Although my rocking/bobbing/swaying felt significantly lighter and easier to deal with after treatment, this invisible progress was very hard to explain.  It felt like most people expected me to come back from treatment back to normal, and I wasn’t. I was happy with my progress, but I had to explain that wasn’t “cured.” It was hard seeing people’s disappointment, even though I wasn’t necessarily disappointed about it myself.  Seeing the reactions of others made it harder to appreciate how far I had come. It was a frequent reminder of how far I had left to go.

After about 3 weeks of orange glasses, hats, and my best efforts at trigger avoidance and relaxation, I was becoming pretty miserable.  Although I was maintaining my progress, I felt like a failure, unable to “stay relaxed” while coping with things that were chronically stressful and a few particularly stressful surprises. I usually deal with stress best by getting out and having fun with loved ones, but in my quest for full “trigger avoidance,” I was opting out of fun things. Staying home reading when I really wanted to be out doing things was compounding my sadness. Trying to control my symptoms was making me miserable, especially when life kept throwing curveballs my way.  

On Pins and Needles

You know that feeling you get after your foot falls asleep?  It feels like tiny pins and needles moving quickly inside your skin.  I started to get that feeling between my right eye and right temple, about 3 weeks after returning from NYC. It was mildly annoying. One night, the pins and needles moved to the left side of my face, then to my left arm, then my left leg.  The tingling was constant. I tried to keep calm. I told myself it was probably just some weird MdDS symptom I hadn’t had yet. I had a MRI scheduled for the next morning (to rule out any structural causes of my continuing migraines and MdDS symptoms), so I tried to stay calm and told myself that answers were coming.  

I took Lorazepam for the MRI, but it didn’t help.  I was in the machine while the numbness moved around the same spots.  Later that night, the pins and needles spread to my whole body. One minute my tongue would be numb, then my throat, then both my feet, then my cheeks, and so on.  It would move around to different spots or multiple spots at once, but it was constantly there. Sometimes it felt more like a tingling, sometimes a burning, and sometimes a numbness.  I would repeatedly check in the mirror to make sure my face was still moving symmetrically. I looked at my hands to make sure they weren’t turning blue. The feeling was coursing all around my body, all day long while I was rocking like a boat. It was overwhelmingcomplete sensory overload. I wanted to get out of my body.  

I cycled through negative and scary questions on a loop: Am I dying? How am I going to live like this? What is happening to my body?  Do I have MS? I’m already miserable on a boat, how am I supposed to push through this, too? It was hard to concentrate on anything. I was scared.  I knew if there was something major wrong with me that it would show up in the MRI, but I was afraid to get more bad news. I worried that even if the MRI was normal, this numbness would be another life-altering sensory issue that doctors couldn’t help me with. Nothing the doctors suggested or that I tried worked to stop the sensation.  

The full body pins and needles lasted for 3 more days without a break.  Inside, I was a complete wreck, anxious and frustrated. No one could see or feel what I was going through, and it was hard to describe.  My whole day felt like a constant struggle, a countdown of moments until I could go to sleep. On the third day, I started to become extremely sensitive to sounds and more sensitive to light than usual.  I remember sitting in a meeting, feeling like I was underwater, watching people’s mouths move and trying to make out the words. When I got home from work, the tingling started going crazy around my eyes and forehead.  My vision started to darken on the edges. My head was pounding. When I realized it was a migraine, I started to panic. All I could think was, I am going to lose my progress. The progress that I have been trying so hard to control and keep is going to be gone when I wake up. I tried to stand up, and the room whirled around me. I bawled in bed until I fell sleep, in pain and exhausted. I woke up 12 hours later.  The pins and needles were finally gone. But now I could see the room swaying.

My MRI was normal.  My neurologist determined that the pins and needles were likely a migraine aura or part of the MdDS.  I never had regular migraines until I had MdDS. After battling the boat for 8 months without medicine, I started taking Cyproheptadine as a migraine preventative.  I was able to email Mount Sinai and get home program of optokinetic (OKN) stripes to try to regain the ground I had lost after the migraine. It helped to get some answers and have some things to try. However, the whole experience was kind of traumatic.  I was already scared of triggers and bad MdDS days. Now I was terrified of having another week-long numbness episode, too. The future seemed more complicated and more unsure than it had when I left New York, full of hope and positivity for remission.

I struggled for 3 more challenging weeks, full of ebbs and flows in MdDS symptoms and migraines.  One day, I’d be rocking, I’d do the OKN stripes for the rocking for 2 minutes, and I’d have low symptoms for an entire day.  I would feel so relieved and excited and hopeful! Then, I’d get retriggered somehow within the next 24 hours. Sometimes, the OKN stripes caused frustrating difficulties with head movements or nausea instead of improvements.  Sometimes I’d have a good morning, but then my symptoms would creep up steadily throughout the workday. I was still getting migraines, all of them preceded by numbness of my face. I started getting new auras, too, like black spots in my vision.  Sometimes I’d be numb, but I wouldn’t have head pain. Stressful encounters left me seeing the world swaying again. I couldn’t hold on to a good day. The bad days felt more devastating after a good stretch.

The inconsistency was exhausting.  I felt completely out of control. I would wake up in the morning with no idea what my body would feel like. I was always worried. Should I do this?  Do I need to avoid this? Can I make it through this day, this hour, this minute? Is this just routine numbness or is a migraine coming? Why are my MdDS symptoms high today? Why can’t I maintain my baseline?

Changing the Tides

Loved ones, coworkers, and doctors started to suggest that it was time to take a leave from work. At first, I steadfastly refused. I’d had worse rocking than this and pushed through. Even though I feel crappy all the time, I’m still capable physically and intellectually, I thought. I had been working full time for over 7 months with MdDS. I wanted to prove to myself that I could push through it. I worried that other people would think I was lazy or exaggerating or not dedicated if I took a leave of absence. I had this false belief that if I could not keep working that it would mean I wasn’t strong enough or courageous enough. Truthfully, I was more scared to take a leave than I was to keep working.

Then one day, after a stretch of good days, I woke up the next morning to strong swaying again. The sway felt more forceful as the day went on and my frustration grew with it. I walked the halls at work, watching the floors move under me. I felt seasick. The right side of my face went numb. The pins and needles spread to my hand.

I couldn’t take the ebbs and flows. I needed time. I needed more sleep. I needed a break. I couldn’t stop the waves, but I could start taking care of myself in a way I hadn’t yet tried. Admitting this at the time made me feel like I had failed. But it was undeniable that pushing through each day in the state I was in, physically and mentally, was making things worse. I had to take some time to concentrate on healing. I picked up the phone and called the doctor, who agreed. It was time to take that leave.

After 8 months of fighting the boat feelings every single day, my eyes filled with tears at the precipice of a month of rest. Would I go into remission? Would things stay the same? Would a month be long enough to change the tides? I was excited and scared to find out…

… and you’ll have to wait for the next post to find out! I will say that I’m doing pretty well. I’ve missed you! Please let me know if there is anything in this post that you’ve connected with or if you’ve had a similar experience!

 

Steering My Ship in the Right Direction: Mount Sinai

There are not a lot of treatment options available for people with Mal de Debarquement Syndrome. There is only one evidenced-based treatment proven to successfully diminish or eliminate symptoms in most patients. The treatment is VOR (vestibulo-ocular reflex) readaptation, which is only done at The Mount Sinai Hospital in New York City.

Preparing for Travel

After hitting the 6 month mark, it started to become clear that I wasn’t going to spontaneously recover anytime soon.  Suggestions and posts from other MdDS warriors helped me realize that it was time to try Mount Sinai. I had been scared to do it before, especially because air travel seemed to be a factor in my onset.  Seemingly out of other options, I decided it was time to bite the bullet and give it a shot.

It took about a week to schedule my appointment after I turned in my intake forms.  When I first got the email, I was so excited! I couldn’t wait to finally talk to someone knowledgeable about my symptoms and start improving.  

As the trip approached, I started to get very anxious about it. My rocking and swaying increased. I stopped sleeping through the night, waking up screaming from transportation-related nightmares.  The frigid, snowy weather wasn’t helping either. My body hurt from tension, even my hands were sore.

Two main fears were stuck in my head:

  1. What if the treatment doesn’t work?
  2. What if I am re-triggered by the flight home?

I did a few things that stopped these fears in their tracks:

  1. I got a deep-tissue massage.  It lowered my MdDS symptoms almost immediately and relieved my muscle tension.
  2. I wrote a list of powerful, positive, and realistic affirmations.  I read them to myself each time the fears came back. After a few times of reading them, it was like giving myself permission to let go of the fears.  I proceeded confidently into the trip, knowing I was doing the right thing.
  3. I asked some other MdDS warriors about their experiences, which helped me mentally prepare and know what to expect.  (Thank you for your help!)

If any of you are going through the same thing, here are my affirmations below. Maybe they will help you develop a hopeful and positive mindset, too!

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The Trip Begins

During the plane ride to NYC, I used earplanes earplugs, took Benadryl, wore FL-41 glasses, and used a neck stabilizing pillow to keep my head and neck straight.  I tried to look around now and then to engage with my surroundings. I listened to podcasts, read a book at eye-level, and took a nap. When I landed, I felt the same amount of motion as when I got on the plane – no dreaded worsening of symptoms!  It was a successful first plane ride.

We arrived the Saturday before treatment. At first, navigating NYC with MdDS was a shock to my sensory system.  The streets are filled with people moving in all directions, loud noises, patterns, and lots of bright, flashing lights.  I had to focus on walking, it was too hard to glance down at the maps app to figure out where we were going. Luckily, I had my husband with me to do the navigating and walk arm-in-arm with me, which made me feel much more comfortable and stable.  We were able to visit some cool places, and I started to feel more relaxed and happy to be away from my normal responsibilities. The weather was cold, but still much better than back home, so it was refreshing to be able to be outside and walk places.  Overall, I was feeling better in NYC than I had when I left. When I left, my symptoms were ranging from 5-7 out of 10. After getting over the initial shock of NYC, I was relaxed and mostly ranging from 3-5 out of 10 before I began treatment.

Treatment

I went to treatment for 5 days, for around 30-90 minutes each day.  The treatment is called VOR readaptation, and the procedure is described HERE.  It is essentially “retraining” the brain in order to reduce sensations of motion.  Basically, I sat in a booth watching stripes move, sometimes with the neuroscientist moving my head, sometimes while looking at a dot on the wall.  After a minute or two of this, I would come out of the booth and report what motion sensations I was feeling. My motion sensations would typically change each time after the stripes treatment, which showed me right away that it definitely works!  

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Dr. Yakushin, the neuroscientist providing the treatment, could often just look at my posture and determine what motion sensation I was feeling.  It was amazing!!! After months of feeling like this was something only I could see or feel, it was so incredibly comforting to have it confirmed by another person!  

He would determine what to do next in the booth based on my reaction.  He was truly an expert at administering this treatment and deciding what was best for my specific symptoms.  Months earlier, I had tried to do stripes at home with a physical therapist (see my previous post for more on that), which I realize now that we didn’t know nearly enough to do it correctly. The high level of Dr. Yakushin’s experience and knowledge is something that cannot be matched by another medical provider right now.  In conclusion, the treatment is likely not something you can just figure out and do to cure yourself without background knowledge. If you think you need this treatment, go to Mount Sinai if you can.

As the days went on and I was improving, I would have to go to different rooms or spots in the laboratory (walking in the hall, standing in a small closet, walking between filing cabinets, standing in a brightly-lit restroom) in order to trigger my symptoms and report them.  

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Here I am, triggering my symptoms in a bathroom stall!

After the first day, I had a pretty big headache.  Going into treatment the second day, it was snowing and I had a migraine with sharp, one sided pains. As I spent time in the booth, I felt my headache easing up, until it was practically gone! On the subsequent days, I felt much better than I’ve felt in months, with reduced headaches and lower, gentler sensations of motion.

Progress

To measure progress, I stood “still” on a Wii board, which measured the teeny-tiny motions that I was unknowingly making due to my boat feeling. I can’t give you an in-depth explanation of the graphs because I don’t know enough, but I think it serves as a good visual representation of my improvements.

Here is the graph before treatment (top) and after (bottom):

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Anecdotal progress and changes:

Symptom Before Treatment During/After Treatment
Feeling Motions Ranged from 3-7 out of 10

Motion patterns easy to identify and pinpoint (mostly swaying, rocking, rotation, forceful gravitational pull)

Constant

Ranged from 1-3 out of 10

Motion patterns difficult to pinpoint, when identifiable feel gentler, no forceful gravitational pull

Occasional instances of stillness or sensations of motion only felt in my head, not felt in my body

Seeing Motions Near constant visual perception of swaying and rocking

Perceived vision switching from eye to eye intermittently

Visual perception of motion and perception of eyes switching only when symptoms are at a level 3
Migraines Constant forehead pressure

Sharp, one-sided head pains

Reduced forehead pressure

No sharp head pains

Light Sensitivity Needed protective eyewear in bright environments, could feel immediately when eyewear was needed Able to tolerate lights without protective eyewear during treatment

Need for protective eyewear returned the day after treatment ended

Trigger Recovery 30-60 minutes required to return to baseline level after exposure to a trigger 0-15 minutes required to return to baseline level after exposure to a trigger
Sleep Difficulty sleeping through the night without weighted blanket

Woke up from rocking sensations

Slept through the night peacefully without a weighted blanket
Other Held on to my husband to feel comfortable and stable walking in the city

Scared to explore alone

Difficulty multitasking while walking (looking at phone or map)

Difficulty navigating crowds

Walked around alone and explored the city, using my phone and map

Increased confidence in going to unfamiliar places

Navigated crowded restaurants and streets without assistance or fear

Overall, the treatment resulted in a significant reduction of my MdDS symptoms. Emotionally, I felt happier and more confident doing a variety of activities after treatment.  As the days went on, I was joking around more and in a better mood.

One of the days, I left treatment feeling so still.  As I walked away from the lab, it was a strange experience to feel close to “normal.”  It was a feeling I hadn’t felt in so long! I starting walking on planters like they were balance beams, smiling and laughing.  I cried tears of joy. I started to get overwhelmed with a mix of strong emotions – an incredible sense of relief, hope for a better future, sadness about the difficult months I’d endured.  With these waves of emotion rolling in, of course, that old boat feeling started again. At least this time it was much gentler.

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Answers and Guidance

I will try to describe to you what I learned, putting it in my own words, to the best of my knowledge.  MdDS is extremely complicated and hard to understand, so make sure to take everything I’m describing with a grain of salt, understanding that it is my interpretation of what I heard.  

The first, most important piece of information I gained, was that I rock (or bob, sway, etc.) with my heartbeat.  If my heart rate is high, my rocking is high. If my heart rate is slow and steady, my rocking feels slower and lower.  That is why caffeine makes my symptoms skyrocket and high-intensity cardio makes me rock hard. It also explains why relaxation, massages, and one cocktail or glass of wine make me feel better.  

Another thing I learned is that everyone with MdDS rocks differently, not always with their heartbeat as I do.  That is why we all have different triggers or things that help us feel better. Knowing this helps me not to get discouraged when something doesn’t work for me that worked for others with MdDS.  Each of our brains made different connections trying to self-heal from MdDS, and those connections result in our different, individualized triggers and helpers. What helps one person with MdDS may not help another, and that is okay.  

The theory is that after the onset of MdDS, the brain starts the process of trying to fix the problem.  In an attempt to heal itself, the brain increases in sensitivity and all body receptors go on high alert.  This is what causes the strange new sensory issues and symptom triggers that people with MdDS experience, which in my case are things like light sensitivity and difficulty with enclosed spaces.  For other people, it could even be increased rocking upon urination due to sensitive bladder receptors, or a plethora of other strange and challenging new symptoms. Also, many MdDS patients, myself included, are very sensitive to substances like medications or supplements, and should take about half of the normal dose prescribed.  

My migraines or headaches changed based on my experiences with the stripes.  It is likely that when my MdDS goes away, so will my migraines and headaches.  For now, it is important to prevent them by reducing anxiety, avoiding triggers, and wearing sunglasses and low blue light glasses.

I have also noticed in the past few months that I would relive other motion experiences. not just the boat feelings.  I gathered a list of strange things I thought I was reliving – rolling chairs, electric toothbrush, neck massager, kettlebell swings, and elevator rides.  I learned that this is commonly reported by other patients with MdDS, and it is best to avoid those things when possible.

The Trip Home

The dreaded day of the flight home arrived!  I was pretty calm with low symptoms until it was time to pass through LaGuardia Airport Security.  I had to take off my hat and glasses and get my bag searched, which got my boat feelings stirring. After this, we walked to the gate, and I was completely overwhelmed.  The crowds, the noise, the floor patterns, screaming children, the lights, the weight of my backpack, plus knowing I needed to avoid triggers, and being closer to that intimidating plane ride, I lost it.  I sat down and started to cry. Then, I put on my big girl pants, took a clonazepam, and went with my husband in search of a more sensory-friendly environment. We found it across the terminal in the “American Airlines” area, where it was almost entirely empty, quiet, and fairly peaceful.  

I took the other half of my clonazepam pill as we boarded the plane, grabbed a seat in front of the wings, and got my other travel precautions ready.  When we touched ground, I felt pretty good. We exited the plane and walked up the ramp, with only a little bit of that same old boat feeling. Success!  I had made it!

Recovery

The two weeks following treatment will be the most important for my recovery.  During this time, my triggers might change as my brain tries to heal itself. Here are the recommendations specific for my recovery based on my current needs:

  • Avoid triggers as much as possible
  • Relax and keep anxiety low
  • Avoid unnecessary travel
  • No boats
  • No treadmill or elliptical
  • No vestibular physical therapy
  • Do yoga or breathing exercises
  • Sit back in meetings to avoid turning my head frequently to face the speaker(s)
  • Wear sunglasses outside and blue light blocking glasses and a cap in fluorescent lighting
  • Don’t watch moving things if they start making you feel weird or bad (ex. water moving in the wrong direction)
  • Have one alcoholic beverage to relax, but not more than one (two or more can worsen or trigger symptoms the next day)
  • See a vestibular psychologist if possible to assist with things like learning calming techniques and breathing exercises

Hope

I am feeling really hopeful about the future after gaining more understanding about myself and my brain.  I feel more in control now that I have more guidance from a knowledgeable professional. This experience was energizing. It has motivated me to focus on taking care of myself.  I still have some boating to do until I reach land, but I’m more confident now that my ship is headed in the right direction.

Thank You

Thank you to all of my fellow MdDS warriors, family, and friends for your kind words, support, and help throughout this process.  You are the best! I am so grateful for you. Please let me know if you have any questions or want to connect. I’m trying to reduce my tech time for the next few weeks, so I might be slow to respond, but I promise I’ll answer.

The Future

Will I go into remission? Will my triggers change? Will my improvements last? I’ll write another post in a few weeks. In the meantime, I’m planning to do weekly updates on my Instagram @lifewithoutlandlegs. I also have videos of the treatment on my profile and additional photos and daily posts from the trip.

Wishing you wellness and stillness!

Ship for Brains: MdDS Memes!

When you have MdDS…

Every day is like:

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When you realize you also re-live other transportation experiences:

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When you ask your PCP for help managing your symptoms:

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Obviously you google your symptoms because your doctor doesn’t know:

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When you try to say Mal de Debarquement Syndrome:

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When no one has heard of your French syndrome:

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Lights got us like:

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When you decide to buy the special glasses:

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When you got that MdDS fatigue:

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When the brain fog hits:

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When you do too many fun things (or one really fun thing):

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When you try to explain your symptoms to people:

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When random people give you advice:

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When your coworkers try to help, but don’t understand:

When someone asks how you are:

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When you get approved to join the MdDS Facebook group:

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And my personal favorite:

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Hope you enjoyed these! Please share if you have any other good ones or favorite boat jokes!

Six Months at Sea

The Voyage Continues

After about 3 weeks thinking I was headed for land (metaphorically), a snowstorm came (literally). I started getting a migraine more intense than the usual head pressure, with a sharp pain on the right side of my head. The migraine lasted for days. With each day, more and more symptoms reemerged – seeing things rocking or moving, feeling rough waves and a mix of motions, dizziness, gravitational pull when walking, short bursts of tinnitus. I was back at sea every minute of every day.

New symptoms also emerged in the weeks that followed – bursts of dizziness, new patterns of rocking, swirls, and spins. Moving my head or body certain ways creates surprising, disorienting movement perceptions. Just turning onto my side in bed can create a whole rush of rough waves. I keep feeling the floor or bed dropping out from under me – like a plane suddenly descending or an elevator adjusting before coming to a stop.  

After a few weeks I got used to the new sensations, and they have become manageable enough for me to objectively write this post.  However, I won’t sugar-coat it, these past few weeks have been devastating. To go from thinking I’d reached land to being back on the boat constantly, at a very significant point in the recovery process, has been a hard pill to swallow.  I am still stuck on this wild boat ride, out to sea, with no land in sight.

(If you are new to the blog and want to read about my symptoms over time, this is the third post.  Read Just off the boatLandlubber, and Land, Ho? for my previous descriptions.)

Mission: Remission

Something that is important to realize is that there is no cure for Mal de Debarquement Syndrome.  Once you have MdDS, if your symptoms stop you are considered “in remission.” This means that you can’t ever be 100% certain that your symptoms won’t return.  MdDS can start again at anytime. People can be re-triggered by a car ride, airplane, fatigue, running on a treadmill, an elevator ride, looking at moving water, or even spontaneously.  

 

The 6 Month Milestone

For people with MdDS, the best chance of reaching remission is within the first six months.  After 6 months, the chances of spontaneous recovery from MdDS are reduced, making it a significant (and depressing) milestone.

“For now, what we know is that if MdDS symptoms do not resolve within several months, the chances of remission get pretty slim.” – Yoon-He Cha, MD

I know that every person is different. Many people do reach remission after 6 months or even a few years.  There is always hope, even if the odds aren’t great.

 

Missing Stillness

If you don’t have MdDS, it is extremely hard to fathom the feeling of constant motion. When this first started, I couldn’t have imagined myself 6 months later still feeling this way.  I desperately long for true stillness. I want to not be moving and not feel moving.  I want to be able to close my eyes and feel the actual, real ground, under my body.  I want to rest.

“They remain symptomatic when they are still, such as standing or even lying down. In other words, they are never quite able to rest.”  -Yoon He Cha, MD, describing patients with MdDS.

I know this is sad to read.  I’m not looking for sympathy. Please, don’t throw me a pity party! When I started this, I was hoping I could reach remission within 6 months and post all about it. This isn’t the ending I wanted, but I have to be real and share the ebbs and flows.   I set out to write my real, actual experience with Mal de Debarquement Syndrome, and this is it.  

A Better Sailor

As hard as this experience has been, it has made me realize that I am very lucky to have the capabilities that I have.  I’m grateful that I’m able to do most of the things I did before.  Yes, I am still on a boat, but many aspects of my MdDS have improved in these past 6 months. Here is a list (and it is pretty long!):

  • Fatigue: I can function on a normal amount of sleep, compared with sleeping up to 16 hours a day in the beginning.
  • Headaches:  I still get headaches, but usually I can push through and continue doing normal activities.  
  • Brain Fog:  Most of the time, I feel pretty clear-headed.  
  • Sleep: I’m able to sleep through the night with my weighted blanket.  I’ve only had one night that the motion sensations woke me up (and were rough enough to keep me up) since I got the blanket.  
  • Feeling Motion: I always feel in motion, but most of the time I’m able to handle it. I’m not sure if the waves feel calmer or if I’ve just adapted to them. 
  • Visual Motion:  I still see my rocking, swaying, etc, but most days it doesn’t interfere with normal activities. For example, I remember struggling to read my first week back from my trip because the words would rock back and forth in a u shape.  Now, my vision is consistently stable enough to read and do most normal activities.  
  • Maintaining Focus:  At first, I would get really distracted by the motion sensations.  Over time, I have gotten better at ignoring them when I need to.
  • Lights: I am able to better tolerate short exposures to blinking lights or bright lights. I also have a variety of glasses and accommodations that have helped me deal with lights (see my post, Staying Afloat, for more info).
  • Technology Use:  I wouldn’t say I can be totally care-free with screen time, but I can tolerate a “normal” amount of tech time.  For example, I used to get sick watching certain shows or movies because of the motion or camera angles. Now, I can pretty much watch anything with minimal problems. I can scroll without issues most of the time!
  • Fear:  At first, I was scared to do normal things like driving, going to stores, or crossing streets.  Now, even if I feel anxious in those situations, I am able to stay calm and remind myself that my sensations aren’t reality. For some reason, it helps me to think about how no one else can see or feel what I’m seeing or feeling.
  • Resilience:  I’ll be honest, most days I still feel pretty crappy compared to my “old self,” but I am amazed that I have been able to push through it every single day for six whole months! Just doing normal things with MdDS is a huge accomplishment.

I know that I’ll become a more skilled sailor over time.  I feel very strongly that this experience is changing me for the better in the long run. It is my goal that I will look back on this time in my life and feel like there was a purpose to all of this for me.  My new motto: Good things are coming.

I would love to hear from my MdDS crew if anything in this post has resonated with you or if you have any advice for me going forward on this voyage.  Definitely share if you have reached “acceptance island” and how you got there!

To read Dr. Cha’s full article describing MdDS (quoted above), click here.

 

Land, Ho?

The reason I first decided to write and share my Mal de Debarquement Syndrome experience was because I was curious about how other people’s symptoms changed over time.  I figured other people with MdDS might be interested in that same thing. It is hard not knowing what to expect.  My post about my symptoms and changes, Landlubber, was written a month ago, so I wanted to update you on my recent improvements!

On December 1st, I took a train ride after staying out late for my husband’s company holiday party.  When I got home, my symptoms were 8-10.  (NOTE: When I wrote this, I thought the train had caused the increase in my symptoms.  Looking back with more knowledge now, I had a large bubble tea that I didn’t realize had caffeine on the train.  That was likely what caused the increase in symptoms. I have not had any problems with trains since.) When I was looking at something, it seemed like my vision was switching back and forth from one eye to the other.  I felt completely panicked because this wasn’t anything I had experienced yet.  I was scared it would stay that way.  I was so afraid that I had ruined all my progress.  This was one of the worst days (if not the worst) in my MdDS journey so far. As horrible as that day and the two days after were, the fear motivated me to do whatever I could to get my visual symptoms under control again.

This blog would not be an accurate depiction of my symptoms if I didn’t tell you what I have been doing for treatment.  I have two friends who were in Italy with me when this all started – one is a doctor and one is a physical therapist.  Way back in October, about 2.5 months into MdDS, I told them I had emailed Mount Sinai to get more information about scheduling treatment there.  (They have doctors that will treat you at the hospital in New York City. The scary part about going is that the flight or long drive could make you worse or reverse the progress from treatment.) My friends found the information about the treatment online, and my PT friend suggested that we try doing our own version of the treatment at home.  Now, I’m not suggesting to anyone to try this on their own – it was essential to have my PT friend’s knowledge to be able to understand the task and individualize it to my needs and symptoms – but I did link some helpful articles below in case anyone else is in a similar situation.  I started doing the “stripes” vestibulo-ocular reflex (VOR) readaptation treatment at home, and I had an immediate improvement after the first session.  After doing it for a week, I could turn my head without feeling sick, I didn’t see things constantly moving in a boat pattern anymore (although I still felt them), my rocking reduced, and my energy levels increased.  A month later, when the winter weather came and I started this blog, my symptoms increased again, at times close to the level they were at before I did the treatment, but my increased energy levels remained.

After that train ride, I decided I needed to try the treatment again.  This time, I had a more specific idea of how to do the VOR readaptation from some articles I had found (see links at the bottom).  I did the treatment for 5 days (for 4 minutes, 3 times a day) following the train ride.  Simultaneously, I started using a weighted blanket and finally slept through the night, catching up on some much-needed sleep.  I had also just received my new, rose-colored glasses in the mail that weekend, so I began wearing them all day long.  So, a few days after one of my very worst days ever, I started to feel better! And not just a little better, a LOT better.  Here are some of the improvements I’ve enjoyed over the past few weeks:

  • STILLNESS:  There are times that I don’t feel the motion sensations!  It is mostly when I’m sitting, facing forward.  I don’t even have the words to tell you how incredible this feels after months of nearly constant, seemingly unpredictable motion sensations.
  • REDUCED INTENSITY OF MOTION SENSATIONS:  The motion sensations are less severe.  The seas are calmer.
  • REDUCED HEADACHES:  I can’t be sure, but I think the decrease in headaches is mostly due to the pink migraine glasses I’ve been wearing.  If I stay in the lights at work too long I still get migraines, but after an 8 hour day I feel pretty normal and can do things at night without fighting through a migraine.  This has been an amazing relief!
  • SCROLLING:  I can scroll on devices without immediately feeling sick. I actually feel pretty normal.  This has been great for holiday shopping!
  • ENERGY:  I still don’t have the energy levels that I had before MdDS, but I am feeling less fatigued!  I think I have mostly the weighted blanket to thank for this because the consistent rest has been amazing.
  • TINNITUS:  I have not heard the random bursts of ringing in my ears for the past few weeks. Gone!

I still have the same light sensitivity that I did before, although I do think I’m more tolerant of it than I was a month ago.  I don’t know if that means it has improved, if I’m just getting used to it, or if it’s the pink glasses.

It is also very interesting now that I have a reduction in symptoms, it is much easier to pinpoint the exact things that are actually triggering my rocking.  For example, I’ll feel pretty still while seated in my lamp-lit office, but I’ll start rocking within minutes of sitting the the small, fluorescent-lit conference room at work.

I’ve never knocked on wood so much in my life, but this is the first time that I’ve had a consistent reduction in symptoms for longer than a day.  I have the next 10 days off of work, so I am hoping that being away from the triggers at work and being able to rest will help me continue to improve.  Five months in, I am filled with hope!

I’m wishing all of my MdDS warriors out there wellness and stillness this holiday season.  Take care of yourselves!  I am so grateful to all of the amazing people who have helped me through this and continue to help – friends, family, and the MdDS community.  Thank you for your kind words, advice, and support.  Merry Christmas! Happy Holidays!

Here are the links to the treatment articles I mentioned:

Readaptation of the vestibulo-ocular reflex relieves the mal de debarquement syndrome

Treatment of Mal de Debarquement Syndrome in a Deployed Environment

Ear and Balance – Treatment Modification for Home Delivery

I don’t know how I would have gotten through the past few months without the MdDS foundation.  They run a website, moderate an online community, spread awareness to medical professionals, fund research, and so much more.  If you want to help, please consider donating to them this holiday season. Donate to the MdDS Foundation

A special shout out to Carl and Jamie!  Thank you for everything!

Staying Afloat: Things That Help

Here are some things that seem to help me, listed in order of helpfulness, from somewhat helpful to definitely helpful.

(Please note that I am not a doctor and these are not recommendations. However, I do hope readers can find something on this list that could help them, too! I am so grateful to the MdDS foundation, MdDS Facebook support group, and my OT/PT/SLP/MD friends who have helped me find some of these helpers!  I am still trying new things and figuring things out, so I will keep adding to the list if anything else is notably successful.)

10. Sitting in the shower

The shower is such a scary place with MdDS! It was the first trigger that I noticed I had. It’s an enclosed space, and I have to close my eyes under the water which is when I lose my balance. I feel waaaay better sitting while I shower because I know I won’t fall or slip.

9. Alcohol (on occasion and in moderation)

This one was so strange to me at first! Caffeine, a stimulant, makes my symptoms worse, so alcohol, a depressant, has the opposite effect (I assume – again, not a doctor). If I drink too much it can increase my rocking the next day (and of course headaches), but a couple of drinks has helped me deal with crowds and enjoy myself in situations that are otherwise difficult. It doesn’t stop the rocking, but it makes it more tolerable. I have noticed I feel worse the next day from beer and sometimes wine. High quality vodka seems to work best and doesn’t increase my rocking as much the next day. I only drink on weekends because it messes up my much-needed sleep on weeknights, and it can add to the nausea I get from lights. It is not so helpful for me that it would be addictive, but it can definitely take the edge off when used occasionally.

8. Massages

My first few weeks back at work with MdDS were the worst of my life because of my intense symptoms at the end of the week. That’s why I booked a massage for a Saturday morning. When I walked in my symptoms were an 8 out of 10. After the massage they were at a 1 out of 10. I can’t say it helped long term, but it was definitely worth the money for the relaxation and lowered symptoms.

7. Hot Corn Bags

My mother in law makes these “hot corn bags” that you can heat up in the microwave. They help me so much with neck and shoulder tension. I also put them on my chest or head and eyes to help me fall asleep.

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Just cloth bags filled with corn!  Sorry about the patterns.

6. Dancing

I went to a very sensory-friendly “silent rave” a few weeks back. There were colored lights, but the room was fully lit and there were no blinking or flashing lights. I had so much fun dancing, and I realized that it seemed like my rocking stopped. I then kept trying it and realized that when I dance I don’t notice the rocking! I can’t do Zumba or choreographed dances without feeling ill, but just moving around to the beat with nothing to follow helps me. I now dance around my house when I have the energy! I don’t know that this would have worked earlier on in my MdDS.

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All smiles at the silent rave!

5. Tech Accommodations: Flux, Reduce Motion, Night Mode

The Flux program is free, and I installed it on my work and home computers. I can feel that it’s easier on my eyes. It makes everything look orange-ish, but it’s so worth it for the relief.  Get it here: Flux

On the iPhone, Night Mode does the same thing as Flux.  Also, turning on Reduce Motion helps with the scrolling.  You can adjust these things in settings.

4. Weighted blanket

For the past few nights, I have slept through the night using a weighted blanket.  It isn’t super comfortable, and I still feel the rocking with it on, but I’ve SLEPT THROUGH THE NIGHT, people!  There is something comforting about it. I even fell asleep on the couch the first time I tested it out. If it stays helpful long them I will update this post!

Update: I have now been using the weighted blanket for over a month.  I’ve slept through the night ever since.  This went from #10 to #4 on my list.  If I could go back, I would have bought this blanket earlier!

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My weighted blanket is the gray one under the white covers!

3. Light Blocking Glasses

I have tried multiple pairs of glasses now and all of them help somewhat.  I’ll give you the pros and cons. 

The day I was diagnosed with MdDS I went on the MdDS foundation website and saw that they suggested blue light blocking glasses. I immediately searched on Amazon and bought the cheapest pair that came up, thinking this would only be a short-term thing and that I’d be better soon. These have definitely taken the edge off from the fluorescent lights at work and from computers. I actually think they make scrolling a bit easier, too. These are from Cyxus. Unfortunately, they make me look like Tina from the show Bob’s Burgers!  They don’t make blinking or flashing lights easier, and looking at snow in them still hurts my eyes. 

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After realizing this condition wasn’t stopping anytime soon (and the lights were affecting me more), I ordered these glasses from Low Blue Lights (lowbluelights.com). When I first put them on I felt like the muscles behind my eyes relaxed. They block out all blue light completely, even in peripheral vision, which is great. I do think they cut down on the migraines. I wear them before bed and in the car. They are unfortunately NOT attractive. They also alter my color perception completely. Everything looks orange when I wear them, and when I take them off everything looks purplish for a few minutes. I decided to try another pair for daytime use to hopefully find something more attractive that would allow me to see colors normally. 

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My most recent glasses purchase is this pair from Axon Optics. They don’t change my color perception which is great. I have only had them for a short time, but they already seem to help me with fluorescent light and tech light. I feel sick looking at snow in my Cyxus glasses, but wearing these I can look at snow without issues! I still think the low blue lights or plain old sunglasses are better for blinking lights like car lights. A benefit of these is that they look sort of cute!  I have even gotten compliments on them from strangers, so I think they look a little like a hippie-boho style choice. I’ll report back after a few weeks if over time they continue to reduce the migraines.  Four days into the workweek my migraines have been better than with the Cyxus pair, even with significant rocking and moderate stress.

Update:  These glasses have considerable reduced my work-day headaches.  I would totally recommend them for use in places with florescent lights!

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2. Laughter and Fun

The week before I was diagnosed with MdDS was one of the most difficult weeks of my life. I have a wonderful friend who threw me a relaxing get together to help take my mind off things. We ended up sitting around a table and laughing about old times. In the midst of some of the worst rocking I’ve experienced, I noticed that for a few moments things felt still. At the time it was completely unbelievable after the week I’d had. Now I’ve realized that happy times like this can give me some temporary reprieve from the rocking. My rocking is still there most of the time, but it is usually easier to tolerate when I am having a good time and enjoying myself!

1. Sleep and rest

I can’t stress enough how important sleep is. The best I ever feel is when I wake up after a good night’s sleep.  Sometimes I don’t even feel the rocking when I first wake up. If I catch up on sleep during the weekend I usually feel much better throughout the week.  Sleep is my biggest helper!

For my MdDS warriors, is there anything that has helped you that you would have on your list?  I’d love to hear other things that people have found success with!  

Other concerns and ideas floating around in my brain:

Immediately after I wrote my first blog post two things happened:

  1. It snowed.
  2. My visual symptoms returned.

My symptoms in general have been higher than they were pre-blog.  My visual symptoms now come and go (mostly are gone) again, but the cold winter weather has not taken a break.  This weather change can easily be what has increased my symptoms. Or it could be increased time on tech devices. Yet, I can’t help but wonder if focusing on my symptoms in order to write about them has made me unable to ignore them.  Maybe it has moved them to the forefront in my mind, even more than before. I definitely think about my MdDS more, and I’m always thinking about others who are also experiencing it. However, I have also gotten great joy and comfort from connecting with people through this blog and learning that so many of us are “in the same boat.”  It keeps me going and gives me purpose that someone might read this and gain some solace or reassurance or be able to share it to help loved ones understand. Just something I’m thinking about a lot.  If I stop writing or messaging, you’ll know it is because my symptoms are just too high.  

Feeling terrible this weekend after a train ride and thinking about this increase in symptoms, I read an article written by Dr. Hain (read it here) comparing MdDS to tinnitus. He suggested Cognitive Behavioral Therapy (CBT) like the kind patients with tinnitus can receive. Reading this lead me down an internet rabbit hole searching for Cognitive Behavioral Therapy self-help guides for people with tinnitus (because you know how hard it is to find any trained professional who will help you with MdDS). Guess what? I found a FREE copy of one (linked here)!  Some of the techniques seem a little dated, but could still be very helpful. Many things in this book could apply to MdDS if you just changed the words “ringing” to “rocking” and “sound” to “movement.” This definitely wouldn’t cure us (nor would it help with lights or headaches), but it may help us not to dwell on the motion sensations. Anyway, I was contemplating following some of the advice in these chapters and reporting back how it goes. Let me know if this is something you would be interested in reading about!  

Rock on, everyone!

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?