My story is a little different than your traditional MdDS patient, but this is a poem and a drawing I made describing the nonstop dizziness.
Exploding, flashing, blinding lights
Thundering, vibrating in your head
Frenzied storm churning & turning
Violently rocking you in your bed
Surging, undulating electrical waves
Prickling, stabbing, burning fire
Mounting pressure set to blow
Your brain and spine’s a hot live wire
Contorting, seizing, spastic muscles
Pulling, tugging each nerve thread
Twisting, crumpling, buckling body
A misshapen pretzel made of lead
Drunken stumbling, sideways walking
Swirling, twirling, upside down
Gravity fails again and again
You are a non-fun circus clown
I was not boat or passive motion triggered, however, I’ve always had issues with passive motion from a young age: car motion sickness, boat motion sickness etc. Even in adulthood, my coworkers would always make fun of me when I would get off elevators in our office building because I would stumble about, sometimes careening into walls after getting off. I would laugh it off. I was able to function, but definitely looking back with the knowledge I have today, I have always had difficulties with different types of passive motion.
The turning point was 2018, and my life was turned upside down when I was essentially “whiplash“ triggered through a physical therapist performing repeated neck maneuvers to treat BPPV. These neck maneuvers went on over a week’s time frame with different kinds of neck turns and hyperextensions. At the end of that week, I couldn’t hold up my head nor walk a straight line to save my life, and my MdDS symptoms became extremely violent, consisting of severe rocking and swaying, walking-in-a-bouncy-house sensations, and worse.
I dreaded laying down at night to try to sleep because closing my eyes makes things much worse, a feeling of being on violent churning seas being tossed all different directions. My vision compensates significantly for my faulty brain signals. Without my vision, my symptoms increase dramatically.
I would be later diagnosed with instability of my spine due to Ehlers Danlos, and it is thought the physical therapy maneuvers caused irreparable harm to my craniocervical junction ligaments which were unstable because of EDS; and my brain which was already susceptible to motion signal issues, could no longer compensate. My vestibular symptoms were confirmed as central (brain-related) through lots of testing and physical therapy. I have undergone multiple spinal surgeries, including a skull fusion in an attempt to try to stabilize my spine. However, in spite of that stabilization, my brain signals continue to be jumbled and are debilitating.
I also suffer with dystonia due to EDS and that is part of the problem as well. I draw and write to help release my frustrations from living in a constantly moving world. I would give anything to live in a world that is still. ~Joanna Richardson