Seizures brought on by certain sounds/noises.. I've only had a few aura's and now just a handful of seizures in the almost five years since my rtl surgery. What I have noticed is that the last two times I have gone to a concert (the only two times since surgery) I've had problems with what my husband and I first thought was the reverb from the speakers but this last time really began to think was the singers voice.
I've noticed before with a couple of my cd's that there are certain parts that the sounds really bother me and I have to turn the volume all the way down or it really messes with my head (worse than fingernails on a chalkboard). Both of these concerts led to seizures and just a general state of uncomfortableness. Needless to say I spent the majority of the concert with my head in my husbands chest hanging on to him telling myself to breathe and praying that I wasn't going to fall over.

Has anyone else experienced anything like this? I told my neuro about it and she (along with my hubby) and I have agreed no more concerts for me. She asked me if they escalated to anything else (gm etc) and I told her no, just the general oh s**t feeling, hot sweaty, panicked, confused etc that normally happens. I know the lights can start them off, but it was the sound (more specifically the pitch at times) of his voice that really got to me.

Wow Stef I've never heard that. I have to agree with the neuro that no more concerts is a good idea!

Stef - I don't do any amplified sound. I haven't been in a shopping mall for years because they play that, for me, insane music all over the place.
I don't go in most restaurants because of their music.

Music was a problem for me even before I developed epilepsy -- isn't that strange? I've been to ONE concert in my life....Ike and Tina Turner in the early 70s I think. I left FAST, in tears and, of course, husband stayed, enjoying every second.

I want badly to go to church -- I NEED to go to church but about two years ago our tiny church got an enormous sound system and all music is so loud the lights vibrate. I tried every pair of ear plugs I could find but I still ended up leaving every time with a massive migraine, usually crying in the car waiting for husband.

Anyhow -- music/sound, for me, does not cause a seizure but it always causes a hideous migraine and total misery.

One more strange thing -- I'm 62 and never once in my life have I ever turned on a radio.

Hi Stef,
Just like you I've had rtl surgery and it wasn't until after the surgery was done that I noticed that certain sounds bothered me and would sometimes lead me into a sz. I found out from my epi that this is called an audio sz. where certain tones and loudness of music or noises can trigger sz. Lights used to bother me much more before surgery but now they don't bother me as much I can watch a strobe light flash and I don't go into a sz. like I used to. You might want to speak with you neuro and let them know about sound bothering you. Here's wishing you well and May God Bless You!

Sue

Hi Stef,

You are not alone. I can listen to most music but put on real high pitched classical music and I want to bury my head. No one gets it. Other times any like constant noise or high pitched noise ( announcements over and over in an airport.) I feel anxious, sweaty and I want to scream out "QUIET"!

I remember when I was younger, my folks had dogs, Golden Retrievers, and one of them has epilepsy. When ever my folks played classical and a real high pitched part came on, the dog would start to howl and howl. We found out it was a type of seizure. We can learn alot from our dogs!!

I hope yuo take real good care around this and do what I forget to do and that is ask for what you need. A great reminder for us all. If only people would get it!!

Thanks for the replies everyone. What's particularly strange to me is that I didn't have a problem with sound or lights [U]before/U] surgery. It definitely seems to be a certain pitch. I have a really eclectic taste in music. I listen to everything from opera to pop to german heavy metal but one thing in common is a certain guitar (from what I can tell its the electric guitar and I'm not sure what else) note and the pitch of the singers voice that really set me off.

I did an internet search on this topic on webMD and it called it Reflex Epilepsy which is a condition where seizures are caused by triggers in the environment, most notably lights (flashing or strobe) and sound. It was really interesting (dare I say comforting) to find this information. If you're interested I did a general search on reflex epilepsy on yahoo and a quite a bit of stuff came up (particularly on epilepsy.com)

Sue- thank you for the term audio seizure, that will give me some more to search on (research somehow seems to comfort me). I have this need to know everything I can about all of this. I would have thought that surgery would have made things better for me not bring about new symptoms but that seems to be the way things have worked, but still I would do it again hands down.

Jingle- I'm sorry to hear that you've missed out on so much of the joy that music brings. I've been wondering if a lot of this has to do with the size of the venue where the music is being played, much like your church and its massive sound system. Perhaps its as much to do with that as anything. I've noticed the terrible "grating" (my term) noise when I'm in the car and I hear that note/noise on one of my cd's or the kids get out of hand but it's not as bad as when I'm at a concert (of course its not nearly as loud and I generally turn the stereo down as fast as I can too).

Cedar- Welcome aboard! You're right we can learn a lot from our dogs, if only we'd pay attention.

Hi, my seizures are brought on by cloudy weather, when it is going to snow is when I get hit the hardest. Since I have had the vegas nerve stimulator put in my seizures have become very much controled by the stimulator. I had my operation over 4 years ago and instantly felt a difference when the neurosurgeon turn it on for the first time. I am some day looking forward to getting a car because I am down to like 1 seizure every 3 months and it is usually controled by my stimulator. By the way I love this forum and look forward to talking to more people that experience epilepsy.

Here's the link in reference to Seizures brought on by sound:

http://www.epilepsyontario.org/clien...genic+Seizures

Musicogenic Seizures

Musicogenic seizures are a reflex epilepsy triggered by certain types of music or even specific frequencies of pitch for which the person's brain has a low threshold or tolerance. These sounds trigger focal epileptiform EEG discharges in cerebral areas specific to the triggering stimulus. This usually results in a complex partial seizure, but may also induce others, such as tonic-clonic seizures.

Musicogenic seizures usually involve a degree of cognitive or emotional appreciation of the stimulus. In some cases, merely thinking of the atmosphere and the emotions associated with a certain stimulus is enough to induce a seizure. They may also occur during sleep.


From the Epilepsy Ontario's website - copy and paste link for more info.

WOW...Stef (VodPop), which ever you prefer...
That's very interesting, I thought I was standing alone in this category. I too had a RTL, back in May '04 for my Complex-Partial Epilepsy influenced by a severe head trauma in 2000. The weirdest thing though, Im not sure it's a "Seizure" per say, but quite a few times I get an "amplification" in my left ear (only the left); I say its weird because my RTL was where my seizures were localized and obviously had been operated on. I remember the 1st time this occurred...I was driving to class (DRIVING--what a feeling) it was the winter of '05. Listening to the radio, in b/w songs came the weather forecast:
"Ok Lancaster county we're looking @ ***5*** inches of snow in the days to come. Just hearing that broadcast really scared the heck outta me. The sound was astronomical for about 5 seconds, then my hearing on both sides is muffled until completion/ending of these, I'll call them "THINGS." I wear a device called the "Speech Easy" to aid my stuttering which has a volume control on it. I thought it was the device but I hadn't put it in yet, I wait till just before I get to class. The amplification lasted roughly 1/2 a minute, so I let it fly(no biggie-just a happen-stance scenario). Later on in the week it happed another time, told myself, "Happens again Dave, call PENN and get the Neuro's opinion." Wouldn't you know it happens again, call the neuro, she calls in an order for an EEG which I was hesitant to enter because I knew that would be the onset of a seizure. You can guess what happened next, so my licence was revoked for medical reasons.
Interesting how these are being labeled Seizures, my Neuro wasn't even sure and she's from one of the most prestigious epilepsy study/research/treatment centers in the world (I won't knock her credentials though, she changed my life). I've noticed two/maybe three other particular instances or scenarios that the "THINGS" are triggered by: #1) Church service (Roman Catholic) so a BIG, BIG pipe organ, and some of the high pitched hymns set these off, #2) I'm in a world music class right now (weird, weird music around the world) and some of the soundscapes set off these "THINGS", and #3) I'm in a bowling league-and on several occasions I'll find one happening. I tell my Dad that's why you win, I have the medical handicap as well as the bowling one, so take it easy on me, he never lets up though--LOL (if my lil insert of humor was insult to your inquiry, sorry) I can go into environments with loud volumes on many occasions w/out "THINGS" being triggered, so it's all still somewhat of a mystery.
To answer your last question if anything follows these, yes I get a severe headache probably 80% of the time. I've not gone a SINGLE DAY in the PREVIOUS 7 YEARS w/out some degree of headache since my injury. I hope you find some comfort and relative peace in further years with epilepsy, and it remain in a dormant state. Just wait, there will be a day...you'll know there isn't the slightest risk you may have a seizure. It's all up to the MDs though.
Take Care and GOD BLESS,