Visual/auditory symptoms

Hi, it’s one of my intermittent “does anyone else get these symptoms?” kinda posts, sorry!

Generally I am feeling much improved than I was a few months ago, thanks largely to medication (propranolol and pizotifen). I’m very rarely getting any spinning vertigo or severe false movement sensations and also my headaches have reduced by about 80%. I’m managing day-to-day stuff pretty well now, although I still have to be a bit careful about certain activities (e.g. I wouldn’t be safe to swim).

I do still have some symptoms that don’t seem to be changing at all. I think I’ve probably always had them, but they weren’t as noticeable when I was spinning all the time, as I was focussed on that!

One is that sounds provoke either nystagmus (loud banging sounds close to me) or a sudden feeling of being very motion sick and unsteady (piericing noises like car alarms).

The other is that if I concentrate on looking at something stationary it constantly flickers up and down. I also think this is the same feeling I get at night (as previously reported in another post like this!) where I feel like I am shaking up and down very rapidly, but when I close my eyes I feel it inside me, whereas when my eyes are open it seems like external things are moving rather than me.

I have the eye problems every day, although it does vary a lot how bad it is (esp at night). The sound problems are really intermittent as I tend to try to stay out of the way of really loud noises, but obviously every now and then when I’m stealing cars I accidentally set an alarm off (only joking).

I’d be interested to know if other people get either of these problems, and if so, is there anything I can do to try to stop them?

Yes, I’ve had both the things you mention. Sometimes sounds make my head feel like it’s rattling. When I was really sick, I would have the feeling like I was being shaken like a gyroscope as I fell asleep - which would of course wake me up. I’m learning to deal with my new normal.