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)

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,

Southie- Thanks for the information, I'll be sure and check out that website. My neuro seemed interested when I told her that I thought the problem was due more to the pitch in the sound than the reverberation after all and now I have some research to do. That's going to be a great help. Thanks!

Dave- It's comforting to know I'm not the only one who experiences these 'things' afterall. At first I think we're all hesitant to call them seizures but there's no doubt in my mind that's what they are. I only hesitate to call them that because I don't want to lose my driving privileges, which thankfully hasn't happened. Like you, I've noticed that I can be in many different environments with really loud music and be ok and then there are other times when little things really bother me (not actually triggering a seizure but at the same time driving me crazy, painful even). My husband says I'm abnormally sensitive to noise now. There's no doubt though that what happened at that concert house was a complex partial, that's too familiar to me to mistake. Like you, that's what I was blessed with. It could be worse though. I'm glad you have a sense of humor about this, it helps, and no it doesn't offend me, I joke about it too.
Have your headaches gotten any better since your surgery or have they gotten worse? I went on Topamax finally this last year and it made a really big difference with my headaches, wish I would have done it sooner. It's helped with the aura's etc too. Think I'll be spending a bit of time on it, which is fine with me, better than the alternative, nothing worked before.
Take care & God bless you too!
Stef

You're welcomed. It's been around for a long time, but if you ARE deemed one, please be very careful! Because it can trigger into Grand Mal / Tonic Clonic!

That's what it typically did with me, I would lapse into CP, be almost like hypnotized state or trance-like stance and most of the time my family or friends would pull me away if they caught it, and if not, then I would lapse into a TC and end up being in the ER at a hospital.

I had this type of seizures before the car accident made me deaf overnight, certain frequencies and hertz will provoke seizures. Now I'm vibration sensitive. I have to be very careful with those Amplifiers, especially with those boom boxes.

Now being vibration sensitive is different, same mode - except I can't hear it, only feel it, but I get the same response - fortunately the meds I'm currently on controls it all!



I'm glad your Doctor is working with you and let your Doctor know about it, there's plenty of information and more about it out there on the 'net!

(NOTE: Amps & Boom Boxes are a problem for pacemakers and other medical devices as well)

Stef-
I agree w/you COMPLETELY about losing the driving privileges...I was hesitant as well, but the amplification I had (especially it being opposite of my surgery) had me worried and I needed some closure. Only sometimes are the amplifications painful and that's few and far between, its mostly just a brief amplification of a recurring sound for a few seconds, then to be followed by the "muffled" sound. To answer the question about the severity of my headaches and if they've improved post surgery, to tell you the truth, I can't remember how intense the headaches that came with the onset of the Complex-Partials before. I do know though that EVERY TIME, NO MATTER WHAT, a headache was always certain to follow. I've had a headache for the past 7.5 years of my life, so I deal with alot of them. I was on Topomax @ one time as well, but that was pre-surgery. For the longest time though, I've been on Butalbtal/Fiorecet, which helped, but with my consistent headaches and taking the med, I began having rebound headaches so now Im on 800mg Ibuprofen--better results.
KEEP IN TOUCH--even personal IM @ Clutch8185@aol.com
Best of Health!