• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
Balance & Dizziness Canada

Balance & Dizziness Canada

Supporting, inspiring and educating those affected by balance and dizziness disorders

Menu
  • Home
  • Join/Renew
  • Practitioners List
  • About
    • What We Do
    • History
    • Our Supporters
    • Testimonials
    • Our Team
    • Initiatives
    • Policies
    • Contact
    • Join
    • Donate
  • Contact
  • Blog
  • Site Map
  • Donate
Balance & Dizziness Canada

Balance & Dizziness Canada

Supporting, inspiring and educating those affected by balance and dizziness disorders

Home   Join/Renew   Practitioners List   About   Contact   Blog   Site Map   Donate

NAVIGATION
  • Balance System
  • Symptoms
  • Disorders
    • Close
    • Vestibular Disorders
      • Close
        • Acoustic Neuroma
        • Age-related Dizziness and Imbalance
        • Autoimmune Inner Ear Disease (AIED)
        • Benign Paroxysmal Positional Vertigo (BPPV)
        • Bilateral Vestibulopathy
        • CANVAS Syndrome
        • Cervicogenic Dizziness
        • Childhood Dizziness and Imbalance
        • Cholesteatoma
        • Dizziness Imbalance after mTBI
        • Enlarged Vestibular Aqueduct
        • Labyrinthine Infarction
        • Labyrinthitis
        • Mal de Débarquement Syndrome (MdDS)
        • Ménière’s Disease
        • Motion and Cyber Sickness
        • Otosclerosis
        • Perilymph Fistula
        • Persistent Postural-Perceptual Dizziness (PPPD)
        • Ramsay Hunt Syndrome
        • Secondary Endolymphatic Hydrops
        • Semicircular Canal Dehiscence
        • Vestibular Migraine
        • Vestibular Neuritis
        • Vestibular Paroxysmia
        • Vestibular Toxicity
        • Visually Induced Dizziness
      • Close
    • Multifactorial Causes
    • Other Causes
    • Imbalance without Dizziness
    • Statistics
    • Close
  • Diagnosis & Treatment
    • Close
      • Patient Journey
      • Working with Professionals
      • Primary Care Physicians
      • Other Health Professionals
      • Where to Get Tested
      • Diagnostic Tests
      • Vestibular Rehabilitation
      • Vestibular Rehab Video $10
      • Cognitive Behavioural Therapy
      • Medication
      • Surgical Treatments
      • Alternative Treatments
      • Future Treatments
    • Close
  • Help Yourself
    • Close
      • Build Your Wellness Toolkit
      • Help Others Understand
      • Keep a Health Diary
      • Time Management
      • Relaxation Techniques
      • Physical Activity
      • Vestibular Rehab Video $10
      • Anxiety and Depression
      • Eat Well
      • Vision Challenges
      • Prevent Falls
      • Overcome Fear of Falling
      • At Home, Work & School
      • Out & About
      • Emergency Plans
      • Move From Survive to Thrive
    • Close
  • Stories
    • Close
    • Our Stories
    • Share Your Story
    • Books to Inspire
    • Famous Dizzy People
    • Close
  • Support
    • Close
    • Ask Us
    • FAQ
      • Close
      • Ask an Expert Form
      • Close
    • Patient Handouts
    • Our Videos
    • Blog Posts
    • Suggested Books
    • For Family and Friends
    • Community Resources
    • Legal Resources
    • Close
You are here: Home / Educational / Living with Mal de Débarquement Syndrome: Brandy’s Story

Living with Mal de Débarquement Syndrome: Brandy’s Story

June 18, 2021

Brandy de Blois

Brandy de Blois

Other than a five-month remission of my symptoms, I’ve been living with Mal de Débarquement Syndrome (MdDS) since Christmas Eve of 2012. That's when it struck. I'd felt it a bit before that, but it would go away after a few hours. I had experienced anxiety in the past and knew these new sensations were different.

For a long time, I felt alone as I advocated for answers to the mysterious turn in my health. The symptoms were present around the clock and only subsided when driving. I didn't get a diagnosis of MdDS until over a year later by a neurologist at Mount Sinai Hospital in New York City. I had been to several doctors up until that point and nobody had a clue as to what it was. And when they couldn't figure it out, they chalked it up to anxiety.

The doctor wasn't sure if it was spontaneous or caused by playing a car racing video game for long periods of time where most of my range of sight was filled by the game. It tricked my brain into thinking I was doing that activity and my brain never came back from the 'motion' of it. It's something I won't ever know for sure, but I can honestly say that I wish I could go back and change all my activities for that day.

Driving is blissful. I don't feel symptoms when I drive except when I get to a stoplight. Then I feel the rocking and bobbing again until I can start driving again.

Vacuuming, preparing meals, washing dishes all make me extra wobbly. As if someone turned me around and around while I had my eyes closed, and then asked me to walk a straight line. I get very unsteady.

I have a disabled parking permit and have gotten many looks from people over the years because they see me get out of the car and I don't have a wheelchair or walker or cane. I look totally fine.

I've learned to adapt by holding onto things. Or I will nudge something with my shoulder or hip as I walk by it and it helps tell my brain important things, like that I'm not falling, the room isn't floating or bobbing, and neither am I.

It seems silly when I say these things out loud. It's impossible to fully explain what it's like to anyone who doesn't have it.

It affects how I walk, even if it's not entirely visible to someone looking at me. Trust me. I can feel it. I feel like I could fall at any moment. My legs are working hard to steady me. It causes strain on my back and my feet and my neck because my brain is constantly telling me the ground is moving or that I'm not on stable ground. My eyes are locked onto a target ahead of me to help me get from point A to point B. But again, it is not a dizzy feeling. Not like traditional vertigo.

It's a 24-hour, seven days a week thing. It doesn't go away if I sit down. I have it while walking, standing still, sitting, or lying down. The floors are uneven, the mirrors are distorted. You just feel incredibly unsteady. That's how it feels. Like you've gotten off a very rocky boat ride and cannot find your land legs.

I remember my five months of remission fondly. It felt weird at first. I wasn't used to feeling still. Like a normal person. It took time to realize it was how I used to feel my whole life until I got MdDS.

I walked for hours and hours. I'd get a dog from the Humane Society and walk it. Then go back for another and another. I was constantly walking and experiencing again what normal life was like. I could watch an action movie or TV show with an unsteady camera and be able to get up and walk normally. When not in remission, if I were to do that, I'd have heightened symptoms for hours. I could sit still. I could stand still. Lying down felt good and didn't feel like I was floating on a raft in a waving ocean.

It was magical.

I remember the exact moment my symptoms returned. I told myself it wasn't happening. Then I told myself it would go away. But it didn't. That was two years ago. But the fact I got those five months of remission is something I won't forget, and I feel blessed to have had them.

The MdDS Foundation Facebook page has been a lifeline for me. It helped connect me with people who fully and completely understand what this syndrome is like. We can share with each other and try to help each other on days when we feel alone and upset.

Learn about MdDS

~ Brandy de Blois, North Bay, Ontario

Recent Posts

  • New! Vestibular Neuritis Animation June 16, 2022
  • FUNDRAISER: Unicycling for Balance & Dizziness Canada April 21, 2022
  • New! Vestibular Migraine Animation December 13, 2021
  • Helping Others Understand Your Dizziness and Imbalance October 11, 2021
  • New! PPPD Animation September 1, 2021
  • Cathy White’s Vestibular Journey: Poems and Paintings August 7, 2021
  • Is it Safe to Drive if You Have a Vestibular Disorder? July 20, 2021
  • Get Your Balance Back July 10, 2021
  • New! BPPV Animation July 7, 2021
  • Does BPPV Get Worse Over Time or as We Age? July 6, 2021

Filed Under: Educational, Stories

Primary Sidebar

Blog Posts by Category

Blog Posts by Month

Recent Posts

  • New! Vestibular Neuritis Animation
  • FUNDRAISER: Unicycling for Balance & Dizziness Canada
  • New! Vestibular Migraine Animation
  • Helping Others Understand Your Dizziness and Imbalance
  • New! PPPD Animation

Educational Posts

Living Life with Episodic Ataxia Type 2 (EA-2)

CANVAS Syndrome Article

Fear Came to Stay: a Poem

Autoimmune Inner Ear Disease Article

Cervicogenic Dizziness Article

More Educational Posts...

Stories

The Confusing Concussion

Living Life with Episodic Ataxia Type 2 (EA-2)

An Inaccurate Diagnosis of Your Vestibular Disorder Can Compromise Your Insurance Claim

Face your Fears… and Risk Getting Better!

Vertigo Changed This Woman’s Life for the Better!

Read More Stories Here...

Menu
  • Home
  • Blog
  • Share Your Story
  • About
  • Contact
  • Who Can Treat You
  • Wellness Toolkit
  • Join or Renew
  • Donate
  • Buy Rehab Video (MP4) – only $10
  • Site Map
Return to Top of Page

Contact Information

Balance & Dizziness Canada
325-5525 West Boulevard
Vancouver, BC V6M 3W6
Voice Mail
BC Lower Mainland: 604-878-8383
Toll Free: 1-866-780-2233 (Canada only)
Email: info@balanceanddizziness.org
Become a Member
Donate Today
Practitioners List

© 2023 Canadian Balance and Dizziness Disorders Society • Charitable Reg. #883457327RR0001 • Credits & Disclaimers • Privacy Policy

Scroll Up