"Bobbing" Dizziness Treatment (vestibulo-ocular reflex) - Mt. Sinai (2014)

[Forbin]

On this thread, @Mij found an interesting link to the MdDS Foundation (Mal de Débarquement Syndrome Foundation). MdDS is a kind of dizziness that feels like "bobbing" and swaying back and forth, as opposed to the "spinning" of vertigo. This is the same type of dizziness I experienced at ME onset and for many years thereafter.

The French name of the syndrome refers to the "sickness from disembarkation," or the unsteadiness one experiences when getting off of a long journey by boat, train or other conveyance which is in constant motion. The process of returning to normal balance is often referred to as getting your "land legs" back.

In people with MdDS, this feeling of bobbing and swaying can last for years.

In this 2014 paper, doctors at Mt. Sinai School of Medicine, New York, apparently found a remarkably effective cure for MdDS.

We posited that the maladapted rocking and the physical symptoms could be diminished or extinguished by readapting the VOR [vestibulo-ocular reflex] . Subjects were treated by rolling the head from side-to-side while watching a rotating full-field visual stimulus. Seventeen of the 24 subjects had a complete or substantial recovery on average for approximately 1 year. Six were initially better, but the symptoms recurred. One subject did not respond to treatment. Thus, readaptation of the VOR has led to a cure or substantial improvement in 70% of the subjects with MdDS. We conclude that the adaptive processes associated with roll-while-rotating are responsible for producing MdDS, and that the symptoms can be reduced or resolved by readapting the VOR.
http://journal.frontiersin.org/article/10.3389/fneur.2014.00124/full

This finding was also discussed here: https://www.eurekalert.org/pub_releases/2014-08/tmsh-nt080714.php

Basically, they put you in a chair in a circular room that has projected, vertical bars spinning around the walls. This gives you a sense of rotating in the opposite direction to the spin of the bars. They then rotate your head +/- 20 degrees on the forward pointing axis. They do this for 3-5 minutes, 1-8 times a day, for 5 days. That's it - although it might not be very pleasant for someone who already has dizziness.

I have no idea if this kind of treatment would help with any kind of ME/CFS associated dizziness, particularly that associated with low blood pressure or POTS. On the other hand, it seems as though MdDS can occur without any recognized exposure to traveling / motion.

It would seem weird if ME/CFS could somehow mess with the vestibulo-ocular reflex in some patients, but how weird is too weird?

 

[Mij]

Basically, they put you in a chair in a circular room that has projected, vertical bars spinning around the walls. This gives you a sense of rotating in the opposite direction to the spin of the bars. They then rotate your head +/- 20 degrees on the forward pointing axis. They do this for 3-5 minutes, 1-8 times a day, for 5 days. That's it - although it might not be very pleasant for someone who already has dizziness.

 

[Forbin]

I know.

It sounds a bit like something they would have done to Patrick McGoohan on the "The Prisoner."

But, really, it should make people feel better, not worse.

I'm not sure if it would have helped my dizziness, but, if it had been available, I probably would have given it a shot."

 

[Mij]

@Forbin. . . I had a vestibular caloric stimulation test done years ago at the hospital and my eyeballs went in different directions- my head spun. I screamed for them to come back in the room and turn the lights back on. It was not fun!

 

[Forbin]

@Mij... I had the same test. I know what you mean, though my reaction to that particular test probably wasn't as severe as yours. I do, however, still get rare attacks of true spinning vertigo - which, oddly, actually only started after years of the constant "bobbing" dizziness had diminished. The strong, episodic "vertigo" attacks are, as you describe, totally incapacitating.