Just curious about how many of us experience nystagmus, a twitching of the eyes. During my dizzyspells, this is one of the more disabling symptoms. I have over the last year or so that it is made much worse by the wearing of glasses.

Any way, just curious.

Hi Brian

I don’t suffer from Nystagmus at all, in fact I’d never even heard of it or thought it possible until I read this board!

However, my lower eyelids uncontrollably twitch a lot, especially when I’m tired. I presume that is something different to what you are describing.


In the early days of this I definintely had nystagmus with the vertigo. Could actually feel my eyeballs twitching uncontrollably. This mostly went away after the first year or so. Two years into it I was “lucky” enough to have one of the spells occur at John’s Hopkins with a PA in the room. It was a fairly mild spell and just lasted a couple of minutes. The PA really watched for nystagmus and finally said “yes there is a slow phase torsional nystagma but it’s really subtle”. It must have been 'cus she really had to watch close to see it.


Hi Brian,
yes I have downbeat nystagmus when scrolling down on my computor or looking downwards.