Community Forum

Musicogenic Epilepsy

I read The Zahir written by Paulo Coelho and one of the characters has musicogenic epilepsy.  He describes it as ecstatic experiences provoked by hearing a particular kind of sound or music.  Has anyone here ever heard of it? I googled it and found that there is only 150 reported cases.

When I was 14 I was watching Sister Act and when they choir sang at the end of the movie it felt like someone shook me, I screamed and was filled with fear worst than anything I could comprehend.  My mother had to hold me on her lap to get me to calm down and I cried myself to sleep.  Since then it happened regularly always triggered by music or an alarm.  My sister had an electric alarm clock and I screamed every morning when her alarm went off.  My mother took me to a doctor who told her that I’m doing it to get attention.  From then on she ignored it and told me to get over it.

   

I had my first grand mal seizure while asleep at 21 and was diagnosed with epilepsy.  Fortunately I only have it when I’m asleep.  I use Lamictin and it’s under control but I still find that certain music, high pitched noise set’s off a kind of aura, I feel spaced out, have intense fear and it sounds almost like water rushing and I hear voices.

 

Has anyone here experienced something similar?

 

Comments

my name's candice. i'm 16 years old and i can't listen to ANY tpye of music or beats. people singing/humming or even just a simple beat on a table will trigger for me. it's so hard. i realized music ever EVERYWHERE!

I use to be intimidated by flashing lights.  When I was younger strobe lights, seem to do it to me.    A very gentle friend of the family told me the fear is controlling you.  I thought in one way she was right.  I worked at a high school and dances were once a month and they would have a strobe light in the gym and I never went in there.

  I thought I could ride my bike home.  When a siren w/ lights would go by, I would be on the ground!  It got me mad when I realized I had a seizure.  The fire dept. that would pick me up  and they told me that sirens would make me fall asleep!

 When I was in high school certain classical tones of music I would listen to and off I would go into a seizure and I would fall asleep.

When I was in a seizure monitoring unit,  I was fighting an aura while listening to some classical music.  The nurse walked into the room for something else and I told her I am not feeling right.  I could not talk right.  I could not communicate at all. at one point and went to sleep.  They told me I had a group of seizures and have given me medication to stop it.

Sound, light can cause seizures. I have had trouble w/ it but I never knew until now that that was the cause.  I love music!  Reading was a problem when I was younger.  It took me a while to understand and read the print.

We all have challenges I will admit. They effect us differently.

 

Musicogenic Epilepsy is a form of reflexive epilepsy in which a seizure is triggered by music or specific frequencies. Sensitivity to music varies from person to person.  Some people are sensitive to a particular tone from a voice or instrument. Others are sensitive to a particular musical style or rhythm. Still others are sensitive to a range of noises.      Phylis Feiner Johnson   www.epilepsytalk.com

 

Regarding sensitivity to sounds, yes, sound epilepsy exists - a ringing bell triggers a seizure in a few persons, a voice triggers a seizure (Mary Hart - epilepsy).  General ideas about extreme sensitivity to sounds - Google for more info:  chalk on a chalk board causes a few students to scream, selective sound sensitivity, hyperacusis (often due to brain injuries, head injuries, concussions, car crashes, etc.), central auditory processing disorder (CAPD), ear plugs, and so on.  Also, switching from the idea of sound to light - photosensitive epilepsy, etc.  Best wishes. 

It's a facinanting thing, and I never realised how hard it was living with it. I've had it for many years now, and it was controlled but came back 18 mths ago and cost me my job and seems to be worse. I've found that when I've gone on holiday they've had music at the airport, on the planes, on the coaches in the taxis at the hotel receptions and in some cases if your unlucky at road lights if a car comes by open top or windows open loud music and the lights are red. I understand there's an operation that can take part of the brain out, lets have it lol.   

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