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!

3 thoughts on “Land, Ho?

  1. Thanks for the extra information from those articles. It’s so interesting to read different studies that document positive outcomes for some subjects. The 2nd one resonated with me as I’m a nurse as well and I experienced the forward / backward movements (quite aggressively) and was one of the unlucky ones (or lucky if you want to put a positive spin on it!) to develop MdDS spontaneously. I’ve seen 3 different neurologists in 3 years that all gave me different diagnosis but the Fukuda stepping test was positive for me in the first few months of assessment that my first neuro diagnosed me with Vestibular Neuritis. I was put on sedative medication that contributed to further brain fog and vestibular exercises which initially made me worse but helped somewhat. I’ve been on a long path you could say.

    I totally get the relief of “stillness”, something that I took for granted but now embrace when I have a few “quiet” moments. My symptoms aren’t as bad as they were but that gentle rocking and swaying seems to come back at different intervals.

    Anyway hope that you continue to improve and I look forward to reading more of your blog. Have a safe and happy festive season.

    Liked by 1 person

    1. Wow, Jane! Yes, you have been though so much! I’m so inspired by you pushing through! Yes, the stillness is so incredible when it’s been so long since you’ve felt it! I think a lot about truly appreciating those moments in the moment, and I do my best to feel grateful in those moments!

      Like

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