vestibular hyperacusis and sensory issues-- noise spasms

Post Reply New Topic

Does anyone else have vestibular hyperacusis or audiogenic seizures? If you don't know what that is, check out:

http://en.wikipedia.org/wiki/Vestibular_hyperacusis

And all the links listed as sources. I've had this for as long as I can remember... maybe since I was a baby. I could never explain to people, even those with hyperacusis, that I spasmed and had to brace myself and felt my stomach drop at loud noises. I thought it was something to do with my spinal cord and nerves, but once I heard about VH I realized that made a lot more sense. Earplugs DID NOT WORK, AIT seemed like a joke, I didn't freaking care if people chewed loudly... church, concerts, violin lessons (mine), even me playing the piccolo... if it seemed loud or high pitched, I'd get that pressure and feel my stomach drop and have to act psycho as I grabbed for a chair arm.

I was really glad to stumble on the works of Dr. Marsha Johnson, who I guess was really the pioneer for the idea. I felt so alone, then I found out what I had and it was like a wave of relief hit. I know one person in real life who has it (she's an aspie, not sure if she knows that yet, lol, but I can tell), but so far that's the only person I've met with it anywhere in the world. I'm sure there has to be more than that! Yes, it's super rare, but in all the internet I can't believe only two people (including me) exist!

you can email me too: raefactor AT gmail DOT com

-R

It appears, after reading the definition, that I have cochlear hyperacusis, and not vestibular. I hate the sound of the exhaust fan above the stove and won't use it unless my husband is there and insists that I do. I hate the sound of motors running. Air conditioners I can tolerate only because I hate being too hot more than I hate the sound of AC running. I have tinnitus also.

yeah, having tinnitus (not just every once in a while, everyone has that, but often enough that it bugs you) is a major sign that it's cochlear.... I think nearly everyone on the planet has cochlear hyperacusis if they have hyperacusis! something like 99% and upwards. I know other people spasm when they hear sounds though, too....

I also have synesthesia and sensory integration disorder... I kind of suspect that they have something to do with it. At least it's and interesting rare condition... it could be a smelly foot condition or something. Feeling like you're falling because the music is too loud is kind of cool. I guess.

Yeah, TG for small favors.

interesting... i dont have this, but i had a scuba accident where i was 35 ft down and all of a sudden my rear popped very painfully
(i was clearing my ears fine and had been at same lvl for long time anyway)

but afterwards, i had water trapped in my ear and it soundeed like a swarm of insects following my head and i had weird balance sensations that stayed with me for +6 months caus my parents didnt believe me

Sorry, I know I'm new here, but the thought of your rear popping is just amusing.

Anyways, I have bad tinnitus, and soft repetitive sounds drive me crazy, but I think I'm lucky enough to avoid this. Though it does explain a few people I've known over the years who get disoriented or stumbly when the music gets loud.

I have cochlear hyperacusis - major issues with 'everyday' sounds. Among many things I cannot tollerate; Fridges and overhead power lines buzzing, Television noise (even if it is far away and all doors are shut), people whistling (aaaarrrgggghhhh!! !! !! !!) Mobile phones - They either annoy me intensely or frighten me when they go off unexpectedly, people striking metal sends me into meltdown.

My dad was rattling a spoon around a jar of Mayo a few days ago (really, really loud!) to get the last of it out, and I went crazy. He doesn't yet know about my AS and he went into a rage about how intolerant I am of 'normal' things

ive seen a pic of a guy who ripped his colon (all the way around) when he was squatting to lift a heavy weight.... it inverted out his bum........ ick

Auditory Integration Therpay may help this problem. I may be trying it soon I'll write a post about it if I go.

All the people with CH are great, but I posted this hoping for someone with Vestibular Hyperacusis to speak up and let me know I'm not alone. Oh well.

Heh, I've already been told auditory integration therapy WILL NOT WORK for VH... sigh sigh. Apparently my best bets are a) vestibular occupational therapy and b) some treatment where they poke a hole in my ear and put anti-inflammatory medicines in... I think I'll try the first one, because I've had this long enough I don't think it's an infection.

I don't know if that is what is causing my problems, but it does sound probable. About 90% probable actually. Does anyone else collapse to the floor and get symptoms that are similar to an epileptic seizure when this happens? This might be a combination of the above and my Tourette syndrome locking my joints as usual.

I don't have that. But I've had Tinnitus 24/7 for about 4 years now. Before that, the tinnitus was just off and on through the years. I also have Meniere's Disease which involves tinnitus, vertigo and hearing loss. My hearing loss is minimal though.

I am hypersensitive to sounds but I don't feel like the sounds are moving me, as described in that article you linked to. If a sound is unpleasant and it doesn't stop when I want it to, I can get nauseous and my stomach does flip flops and my heart will race and I feel panicky.

Coming late to this thread because I only just discovered it, but I have vestibular hyperacusis.

Are you still around, raefactor? We can chat about VH some if you'd like.

Sparrow

I am not sure. When I hear loud noises, one of the effects is disorientation (I said on the 4th of July that I thought that a particularly loud firecracker caused an out of body experience, it was meant as a joke, but it did cause something).

I really don't know.

I understand that everybody jumps at loud sudden noises, but it doesn't get to a point where it takes over their life, like it does with me. And other people don't take precautions like I do. For example, our smoke alarm goes off if something cooking in the oven burns a bit and sends off smoke, and I'm always prepared for that. When I've got to go past it, I put my fingers in my ears, even if nothing has burnt, I still do it just in case because I don't trust it with any food cooking, and if I'm carrying something in my hands then I take earplugs with me. But my brother will just come downstairs without worrying about the smoke alarm at all, and even if it goes off with him under it, it still doesn't bother him at all. But if I was caught under the smoke alarm the minute it went off, I would jump 6 foot in the air and involuntarily scream, and the shock of it would stay with me for at least half an hour after that, and I'd be all white and shaky. When other people jump, the shock of it doesn't stay with them for as long at it does me.

Most people say to me ''it doesn't make you jump if you're expecting it'', but it does with me. In fact, when I'm expecting a sudden noise, it makes it worse, in a way. If somebody was holding a balloon and said, ''I'm going to pop this balloon NOW'' and actually popped it immediately after saying ''now'', it might not shock me so much, but if somebody said that then waited a few seconds, it will shock me to pieces, even though I was prewarned. This is what caused issues with the bell at school. I kept a watch on my wrist at all times to keep an eye on the time, then when the bell was due to ring, I would try my best to not be under a bell until after it rings. I found myself dawdling about outside or in parts of corridors where there weren't any bells directly above me, which probably made me seem weirder than what I really was. The bell didn't seem to bother the other kids, only on rare occasions I've seen someone put their fingers in their ears when under a loud bell, but not often. It was just me that was so afraid of it, and it would be and all, being the only Aspie in a mainstream school. In the first 2 years of High School, they didn't use bells, which was lovely. Then a new headmaster came, and wanted to bring back using bells, which was so horrible for me. Just the thought of being under a bell always filled me with fear. I did try not to be once, but it didn't work. I found myself going all wobbly and nauseous when near a bell. But sometimes I think that this bell thing is not just a loud noise sensitivity - it's more of a lifelong phobia. Even now when I see a bell in a shop or somewhere, I still get a feeling of phobia filling up in me, and my mouth goes all dry like I have seen a ghost.

I have tinnitus and in my case when I hear certain high pitched sounds, like squeeky voices or laughter or a baby crying, I feel as if someone has punched me in the stomach and I get extremely angry in an instant. I attribute this to synesthesia (I have various types of synesthesia), but maybe it's hyperacusis. I do get confused and frustrated in very noisy places, but I thought that was sensory overload in conjunction with the synesthesia. I will have to read more on hyperacusis, cochlear and vestibular.