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?

A Shot Across the Bow: My Onset Trip

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

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

 

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

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

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

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

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

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

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

This staircase was so intense, especially with MdDS!

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

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

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

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

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

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

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

Donate to the MdDS Foundation

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

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

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

Anchors Aweigh: Mal de Debarquement Syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MdDS Foundation

MdDS Symptoms – Mount Sinai

Web MD Mal de Debarquement Syndrome

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

https://mddsfoundation.org/donate/