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Music-triggered gelastic seizures connected to my sound sensitivity?
Fri, 03/05/2010 - 15:01Hi. I'm 16 years old and since a few months back I've been having what can only be described as gelastic seizures(meaning my limbs goes numb, i start to jerk uncontrollably and laugh my ass off for no good reason) but in my case, there is a difference. According to the sources I've found, gelastic seizures are triggered by no apparent reason, but I know exactly what causes it - music, and 98% of the time, it's Heavy Metal. I also play the recorder, and I get mild cases when I play fast, ususally irish, pieces too. Typically it is fast, extreme, over the top music with lots of "layers", like Cradle of filth, Finntroll or, the trigger of my biggest attack yet, Ensiferum's "Twilight tavern" that causes them. This is not actually much of a problem for me - I don't get them a lot, they are usually not so strong I can't walk, they're easy to avoid and to be completely honest I actually like them. It brings the music to a whole new level and I've found that drawing during one of those attacks is incredibly fun.
However, I'm also suffering from sound sensitivity. This is much more of a problem for me. This might seem completely un-related, but I recently discovered that I have a much higher "resistability" to the songs that trigger the seizures, meaning I can listen to them without my ears going rampage on me, at least compared to the songs and genres that never causes seizures. Heavy Metal, for example, I can listen to. As I said, this genre is what causes the seizures the most. On the other hand, my ears can't stand, lets say Hip hop for example. They go sore quickly compared to when I listen to Metal, and this kind of music has NEVER EVER caused seizures for me. There's got to be some sort of connection here. I have absolutely no idea what the hell I'm "suffering" from, and as far as I know it might not be epilepsy at all. But if it is, is it possible that my sound sensitivity could be caused by it? I looked and I never found any info on how epilepsy could be related to sound sensitivity, but I've done some research and I don't think it's unreasonable.
I'd be grateful for your thoughts. Sorry for the long post, and thanks in advance,
Maya.
Comments
Re: Music-triggered gelastic seizures connected to my sound sens
Submitted by Failkidd on Thu, 2010-06-10 - 14:22
Ok, first of all, THANK YOU for replying to this, Scruff! I think I read your post like five times or something. Nice to know I'm not the only one - I was seriously starting to think I was going insane. I looked around A LOT, and so far you're the only one I know of other than myself with this problem. I'm sorry I didn't reply earlier, but I posted this like forever ago, so I didn't think I would get any response. I think this is the exact same thing.. only you're a lot better at describing it.
I always thought the 'filter the sound' thing was just a matter of concentration, since I never read about it in connection to hyperacusis. I'm diagnozed with it, but since my hearing itself is on a much higher level than most peoples, I figured I just picked up a lot more than I should... I suppose that's not entirely the case. But I know *exactly* what you mean with 'good music' and 'fixing' it, but I never tried concerts sicne it's way too loud for me. I'm getting therapy for my hyperacusis and I have seen results, but I'm not entirely there yet.. Isn't it painful? I couldn't even be able to stand the crowd.. I do have a few songs that works for me, though. It's a bit troublesome, since the amount of songs that gives me seizures only grows... Don't have a lot of them left...
But,how did it go after you posted? It's been a while, and I'm curious to how you coped with this since apparently your seizures are a lot worse than mine. If you got any new symptoms, or if you found out any info. I talked to my sound therapist about this, but she hadn't heard about anything like it before, apparently. There's a connection to obviously, since both of us have it, but I'm starting to question whenether or not it's actually hyperacusis or something entirely different. But anyways, she DID manage to get me an appointment for a brain scan. *yay for living in a country with free helth care :D* I don't have a set date for it yet, but if I get around to do it I was wondering if you would be interested in the results? I'm thinking it's either epilepsy orsome kind of MS symptom, and if it's epilepsy it should show it's face on an MRI.
You take care.
Ok, first of all, THANK YOU for replying to this, Scruff! I think I read your post like five times or something. Nice to know I'm not the only one - I was seriously starting to think I was going insane. I looked around A LOT, and so far you're the only one I know of other than myself with this problem. I'm sorry I didn't reply earlier, but I posted this like forever ago, so I didn't think I would get any response. I think this is the exact same thing.. only you're a lot better at describing it.
I always thought the 'filter the sound' thing was just a matter of concentration, since I never read about it in connection to hyperacusis. I'm diagnozed with it, but since my hearing itself is on a much higher level than most peoples, I figured I just picked up a lot more than I should... I suppose that's not entirely the case. But I know *exactly* what you mean with 'good music' and 'fixing' it, but I never tried concerts sicne it's way too loud for me. I'm getting therapy for my hyperacusis and I have seen results, but I'm not entirely there yet.. Isn't it painful? I couldn't even be able to stand the crowd.. I do have a few songs that works for me, though. It's a bit troublesome, since the amount of songs that gives me seizures only grows... Don't have a lot of them left...
But,how did it go after you posted? It's been a while, and I'm curious to how you coped with this since apparently your seizures are a lot worse than mine. If you got any new symptoms, or if you found out any info. I talked to my sound therapist about this, but she hadn't heard about anything like it before, apparently. There's a connection to obviously, since both of us have it, but I'm starting to question whenether or not it's actually hyperacusis or something entirely different. But anyways, she DID manage to get me an appointment for a brain scan. *yay for living in a country with free helth care :D* I don't have a set date for it yet, but if I get around to do it I was wondering if you would be interested in the results? I'm thinking it's either epilepsy orsome kind of MS symptom, and if it's epilepsy it should show it's face on an MRI.
You take care.
Re: Music-triggered gelastic seizures
Submitted by phylisfjohnson on Tue, 2010-05-25 - 10:33
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
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
Re: Music-triggered gelastic seizures connected to my sound sens
Submitted by scruffy6666 on Tue, 2010-05-25 - 08:34
I've been having sound sensitivity issues involving music as well. I've always been a little sensitive to sounds, high pitch or dentist drills, but now it's more about sound quality. I go to concerts A LOT because it 'fixes me'. I've always said music is MY drug. There is a name for it, .hyperacusis, unless our music sensitivity has a different name because it is extremely rare. From what I read, the area of the brain that makes decisions on what sounds to focus on, what sounds to tune out doesn't function normally. You hear ALL the sounds at once and can't filter the bad or unimportant. I think this is why 'good music' fixes me. It becomes one sound if everything the sound guy and band is doing it right. I've begged sound guys to adjust the treble before and they look at you like you're crazy. If a singer can't sing, karaoke, bass is not strong enough to balance the treble, treble too high etc. it is beyond finger nails on a chalk board. I run for the door which is a problem in most venues because they won't let you back in. I think it's discrimination because it IS a handicap. It takes 'good music' to fix me & I have to listen to it for about the same amount of time that I was 'tortured' with my ears in my fingers pacing around the smoking lounge till the bad bands stop playing. What I've read in the past week because it just got to the point of unbearable is that it's typically gradual, possibly brought on by Traumatic Brain Injury, (I had), Lyme Disease (I had), auto-immune disorders (I have), genetic (usually begins at a young age), or reactions to drugs for neurological disorders(I have seizures from the TBI). SO, it's really unknown because it is so rare. The NEW twist just happened last night. My normally 'good music' brought on a seizure type of activity, different from my normal partial complex seizures or focal stares. It was a really really really good feeling until I locked up. I noticed I can't listen to good music anywhere, especially in small areas, without closing my eyes. They say it's a way of focusing on the sound, eliminating other distractions because the brain is busy trying to deal with sound. This just started a week after the 'bad music' thing started. The genre of music doesn't matter, rock, metal screamers, rap, country, you name it as long as everything is equal and on key. I was driving, listening to Atreyu's Lead Sails, Paper Anchor and I could NOT keep my eyes open. I was driving with one eye. Then when I parked, I could NOT get out of my car. I HAD to keep listening. It really was like a drug I didn't want to come down from because it felt so good! I had to slowly turn down the music, but kept turning it back up. Then I noticed something was making me turn my head, my body at an angle. Figured out it was because my left front speaker was blown. My brain was literally trying to balance the music. My left ear was trying to close down (like contracting the muscles surrounding my ear). It was WEIRD and I thought I was loosing my mind, BUT it felt soooo good, completely opposite from the bad music. It was like I was tripping on music, even tho pot is the only drug I've ever used so I can't really compare. After 15 minutes of being trapped by the music, unable to leave my car, I locked up and started turning sideways..felt good for a while then I realized I was having a seizure. What type I don't know. I've only had focal or Partial Complex. It was like (pardon here but only way I can explain it) an orgasm and seizure at once. It left me exhausted when it finally stopped after I struggled to turn off the music during lock up. Lights started to bother me. It was like my brain rolled upwards from my temples, to forehead to the entire top of my head and didn't want to relax. After someone drove me home, I went straight to bed. I'm fine this a.m. but now I'm scared to death to listen to my 'good music' as well. SO, you're not alone.