Constant visual disturbances?

I’m experiencing some kind of vestibular disorder—awaiting to see an ENT—but the visual symptoms are causing such anxiety.

I experience the trampoline walking and false movements in bed like I’m sinking or floating head syndrome but I also feel like my eyes lag behind.

I’ll read a sentence and it’ll ‘lag’ behind, I see walls and floor breathing, my general visual environment is unstable like I’m looking through a shaky camera, if I stop walking abruptly I see the floor zooming out!

Just crazy, crazy visual. Static objects shift side to side or move up and down. The TV moves towards me and the fireplace can drift off to the left.

The kicker is that I’ve had my eyes tested twice in the last 5 months and even OCT scans and nothing comes up.

Does anyone else experience these symptoms?

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Pretty much all of us have some of them, all of them or all of them plus more. I’m in that latter camp. Add hallucinations to your nystagmus plus visual snow, reflections, starbursts, halos, etc and we’re looking at the world with a unique perspective. It’s migraine even though it’s also beyond most people’s understanding of what migraine is.

There comes a day when you’ve resolved a lot of them or learned to view what’s remaining as annoying. ENT won’t help other than to offer referrals. We start at neurologists for meds and to learn the lifestyle modifications. Secondary referrals are often to vestibular rehabilitation therapy, neuro-ophthalmology and sometimes neuro-optometry.

I’ve done VRT twice, trialed over a dozen meds, been to the neuro-ophthalmologist twice and will see a neuro-optometrist next month. I’m an extreme case and a long hauler. And yet I’m typing this on a phone. So i function whereas several years ago I couldn’t.

Dramatic improvements usually come when you find the right migraine med(s) for you. Those generally come from the neurologist.

Hang in there. It gets better and more manageable with help, time and experience.

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