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!

3 thoughts on “Steering My Ship in the Right Direction: Mount Sinai

  1. Hi Kate,
    Yes the $2500 includes everything, no additional fees. I stayed at the Marmara Hotel which had a hospital discount, a 15 minute walk. They give you a list of accommodations when you schedule with the hospital. I live in Milwaukee, WI, so shorter plane ride then you will have. I think it’s still worth it though. Clonazepam is another medication similar to Lorazepam that should help prevent an increase in symptoms following travel. They both work, it just depends on your doctor I think. I wrote another post on here called “Things that help me” where I have a full review of all my glasses I’ve tried! I need to update it, but that will explain. The FL 41 are migraine glasses proven in some studies to help migraines in general, not for MdDS. Haha so actually one of my MdDS friends recommended the Benadryl to me and I figured it couldn’t hurt, so I don’t have a good reason. I couldn’t take the clonazepam on the flight there because you can’t take it before treatment. It is so so scary! I’m so sorry you are going through this! Please feel free to DM me on Instagram or email me via the contact me page if you ever want to talk. Best wishes to you for improvements!

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  2. Thank you so much for blogging about your experience with this! This is helpful. I’ve had it since 2007. I’ve had 4 episodes since the first in 2007. The first 3 were only 2-7 weeks long but this 4th one has been 24/7 since April 2014. I’m down to around a 1-3 though, so I don’t know if Mt. Sinai would see me or not. Probably need to raise $$ to go up there. Glad you’re learning to cope. I’m going to see if anyone in the Raleigh or Durham, NC area is doing any treatment like this.

    Liked by 1 person

    1. I’m so glad it is helpful! Thanks for reading! You are definitely a strong sailor! I’m usually a 1-3 also and the doctor from Mount Sinai told me not to do the home exercises if my symptoms are 3 or lower, so I’m not sure how much help it would be for the expense. Wishing you wellness and stillness!

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