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Posts: 4
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The sound of my daughter eating was bothering me. I put in a google on does the sound of chewing bother you, and stumbled over this forum. It is nice to meet you all. I'd never heard of hyperacusis.


So, I'm an adult woman in my 30s. I developed temporal lobe epilepsy in my teens, eventually had surgery to remove a tumor in my late 20s from the medial temporal lobe, all of the amygdala was removed. I had, among other interesting and unusual triggers and things, persistent sound triggers including musicogenic. When my epilepsy was bad I could not go into malls or movie theaters or any such thing, often would have to immediately walk out of stores where music was playing as I would start to partial seize. Heh, knew a South African woman on a message board who was musicogenic also and had to walk out of stores in South Africa too. Even city street sound and the grocery store were difficult, and I preferred working nights when there was less sound. Particularily echoing sound, and the murmurous sound of a crowd talking would trigger seizures. Did get to the point of plugging my ears to dampen the sound.


I also am able to hear bats at night going eee eee eee, those little buzzing noises some appliances make, some security alarms in stores, the really high pitched noises you know.


Anyway, it's been years and after surgery no longer take medication and so on, epilepsy in remission. But I still leave my computer muted, have no tv in my house save I grant the kids movies on the evenings in weekends Friday and Saturday. And two sounds that I dislike are the sound of chewing and the sound of plastic crinkling, ugg *cringes at the thought* I just like it quiet.


Never really discussed any of this with doctors or neuros, just took meds and reported seizure activity. Does what I've described make sense to you at all, sound familiar?


Thank you, and it's nice to meet you all. It'd be nice to discuss and learn.


Posts: 129
Reply with quote  #2 
Hi welcome

what do you mean my seizure activity?

is it only music that can give you seizures?

Your kids don't watch tv in your house?

just curious, I have a 2.5 year old, and am finding it difficult....

wishing too for quiet... ugh.........

Posts: 55
Reply with quote  #3 
Describe your seizures more in detail. Exactly what seizes and what you feel.

Are both your ears affected?


Posts: 4
Reply with quote  #4 

Hi you guys. No, my kids don't watch tv. Mine are big now, 8 and 10, and they don't mind at all no tv. They're all outside in the front yard playing with their friends now and my house is nice and quiet. It's a non-issue at our house. They play with their friends or each other or read or all sorts of stuff. They do bug me on occasion to turn on the sound on the computer for their music and/or videos, but they understand it's just the way mom is, and it isn't an issue. Eh.


I had the surgery I forget, 5 plus years ago, so have no seizure activity anymore, EEG comes up clean and no longer take meds. It didn't have anything to do with my ears, if you know what I mean. It was the sound in my head during processing. It would trigger. It was one of multiple triggers as well as unprovoked.


The main sound triggers were echoing like sound in an enclosed space, some music where a feeling of rhapsody would transform to a seizure, dull music that didn't grip didn't bother me, well, heh, not like that. The sound of crowds, especially crowds in an enclosed space. I had a whole spectrum of triggers that shifted over time, but the auditory became prominent and persistent, not fading.


Um, describe my seizures? I could write a book on them, lol, was a very unusual experience. I had temporal lobe epilepsy, so start with standard deja vu, and then it depended on what part of the mind my seizures were spreading to at the time, so many varied, ranging from the feeling of balance and perspective, to memory, to visuals, to dancing hands, to processing emotions such as epiphany revelation trance, urges to write or talk, dream states, etc. And convulsions of course.


I just was curious about what hyperacusis was, and the neurological substrate that might relate auditory triggers and musicogenic epilepsy and what I'm seeing described at this website, because there does seem to be some overlap. Except it seems where the sound caused my hypersensitized neurons to misfire and result in seizure, I'm seeing people describing something slightly different, having to do with the ears/sensory organ themself and with the processing of the sound in the mind. Fascinating.

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