Aural Migraines? Ocular Tinnitus?

[joko]

I have a condition that i investigated online & found its name etc - but now i cant find it or what its called

Its a kind of ocular tinnitus, as its only 'activated' by eye movement.

Its not a constant sound, no ringing etc, but every single time i move my eyes to the sides, there is a weird sound. if i look straight ahead theres no sound at all.
(only i can hear it, its not 'mechanical' as in the literal sound of my eye moving in the socket)

its 3 'hissing taps' like tsst tsst tsst in quick succession.
i can sort of 'feel it' like a little pulse/wave feeling behind the eye.

There is no visual disturbance - i can see fine etc.

I also have a general sensitivity to light & sound, everything has to be set low & my screen is very dark, but it increases with this a lot.

everytime i google aural migraine, its comes up with aura, which i dont have (though i have had a few proper ocular migraines, with 'aura' over the years, but theyre rare, only about 3-4 times ever)

i did find the term as 'ocular tinnitus', and it seemed to 'fit' at the time, but now when im googling, its bringing up more 'visual disturbances' like blurriness, fuzzy, snowy vision etc. - theres none of that.

any ideas?
its happening right now, so as you can imagine, wading through pages of useless stuff is pretty frustrating.

im looking into triggers - there seems to be no rhyme or reason as to when it happens.
i have woken up with it, after sleeping in a dark room with an eye mask.
curtains are dark & my bedside lamp is not especially bright to 'trigger' it.
my alarm setting is just music on my phone, not especially loud.

im think of if i can find some kind of 'sunrise' lamp that activates when i switch it on rather than by an alarm, so its not a sudden 0-60 switch on.

but its pretty annoying, as its my eyes, it pretty much affects everything i do, & makes it frustrating - it also affects my ability to do anything creative, or even read etc.

tried antihistamines (been lookign into MCAS for other reasons) but hard to tell if it helps.

i am now off gabapentin - had enough - only 'regular' meds at the moment are venlafaxine - but it happened long before i started on them.
Ive not found any meds ive been on have made it better or worse.

Nothing at all stops it. Nothing.

any ideas? - name? triggers? treatments?

Thanks :)

[allenlondon]

My only contribution is this.

I had tinnitus, fairly badly, for some years. A consultant I saw scratched his head, and said, I think you've just got bunged-up sinuses. And gave me some (his description) industrial-strength nose drops.

I'm NOT saying this would work in your case, but it did for me - reduced my tinnitus from 8 or 9/10 down to 3-ish, sometimes even 2. Never zero, but far enough down to stop thoughts of suicide.

Flixonase is the thing. I'm still using it, on and off, after 20 years, and keeping my sinuses clear seems to be the key to my odd ear noises. It might help. It has to be worth a try.

You can get it on prescription from UK chemists, or without a prescription from the Kiwi Drug Co, on line.

Allen.

[Buenchico]

Is this relevant?
https://www.bbc.co.uk/news/uk-england-oxfordshire-14308474

[Sqad]

Nothing comes to mind....sorry.
Will give it further thoughts.
Have you been seen by an E.NT surgeon and had X-Rays and hearing tests?

[joko]

thanks all,

sqad - hearing tests all fine, good hearing

i had mri scans many years ago to check on my hyperostisis frontalis interna - and it was not getting worse, so they left it at that, but nothing more recent because of this.
its hard to say when this started, i suspect it started slowly long before i 'noticed' & thought to investigate.

i do have appt coming up with an ent for another reason & thought i might mention it to them while i was there, but that will likely not be for months

my sinuses seem to be ok, not blocked but i do have issues breathing through my nose sometimes, i think probably due to mild swelling from my various allergies.
ill try the nose drops though - im fully expecting the answer to this to be something unexpected

[joko]

Buen, i dont 'think' its that, but im goign to investigate it further, its not the noise of 'movement' it is the same noise no matter how far a look to the side or the angle,
but its the movement triggering the noise - it makes the 3 taps but if i stay looking the side it doesnt repeat.
the taps are much faster than a pulse

i do wonder if its sort of like the noise of knuckle cracking is the sound of air being forced through the space at speed, perhaps its fluid or blood or something being quickly forced through the area at high speed or pressure or something.
and if so, maybe its normal it happens, but not normal i can hear it?

my eyesight is not bad, i wear glasses for driving but a low script.
i also have fairly low bp.

i need to 'run some tests' on myself i think - such a speed of eye movement, times when there are more than 3 taps (not very often)
angle of eyes, etc

Do you remember the sound from that horror film - its either Friday The 13 or Halloween ...?

sort of a 'voice' saying "ki ki ki, ma ma ma" ...?

its kind of like that 'ki ki ki' for speed & sound, though i hear more of a tsst.

[Buenchico]

Scientific research has shown that your eardrums move when your eyeballs do:
https://www.newscientist.com/article/2141467-your-eardrums-move-in-sync-with-your-eyes-but-we-dont-know-why/

So it's probably not that unusual for hearing to be linked with eye movements.

[joko]

i guess since balance is so connected to ears & eyes it stands to reason they'd be connected more than you'd think.