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Music-triggered gelastic seizures connected to sound sensitivity?
Greetings. I'm 16 years old and since a few moths back I've been having what can only be described as gelastic seizures (meaning my limbs goes numb, more or less uncontrolled eye movement, I start to jerk my arms uncontrollably and laugh my *** off for no good reason) however I don't fit the criteria perfectly. According to what I've managed to find, gelastic seizures are caused by no apparent reason, but I know exactly what's causing it. It's almost ALWAYS music, and 90% of the time, it's Heavy Metal. I also play the flute and fast, mostly Irish pieces can cause mild seizures as well. Some classical, more epic pieces like "Carmina Burana" might work too. Generally, it's speedy, extreme and epic-sounding music with many "layers" that causes it, like the bands Cradle of filth and Finntroll, or the trigger to my biggest seizure yet, Ensiferum's song "Twilight Tavern". Now, this particular symptom doesn't actually bother me much - it's easy to avoid, usually it's not so bad I can't walk, I don't get them very often(maybe like once very other week) and to tell the truth, I actually like them. It bring the music itself to a whole new level ad I've found that drawing during one of these "seizures" is incredibly fun.
HOWEVER. I'm also suffering from sound sensitivity. This might seem completely unrelated, but please let me explain. I'm WAY less sensitive to the music that causes the seizures. For example, Heavy Metal. I can listen to it way longer than hip hop without my ears starting to hurt. As I said before, Metal is the main trigger to my seizures, but i have never EVER sz'd while listening to hip hop. Not saying that Metal don't hurt my ears, but I'm actually less sensitive when having a seizure and I'm starting to see a pattern here. I don't know if I even have epilepsy, but if I have and it's the cause of the seizures, is it possible that it might be related to my sound sensitivity? It might just be a coincidence, but it's not completely unreasonable. Besides that, if anyone knows what kind of epilepsy I'm suffering from since I've never heard of gelastic seizures caused by music, please tell me. I would be grateful for your thoughts, and sorry for the long rant. Thanks in advance, Maya. |
Hi Maya,
I'm no neurologist but it sounds like you might be having audio seizures and that's when certain sounds can trigger a seizure for a person. If I may ask when you are playing this music or watching it are there a lot of bright flashing lights or strobe lights? If there is it could be the lights that are triggering the seizures this is known as being photosensitive to certain colors. My advice to you is to start keeping track of any of your possible seizures by getting a calendar and write down what time of day/night you have these seizures with a discription. If you have a monthly cycle circle the date when you start and stop your period because it can be hormone related. The best thing for you to do is to see a neurologist at an Epilepsy Center which are usually found at University Hospitals. I've gotten the most help there or you can see an Epileptologist - Dr. specializing in Epilepsy who will want to run some tests on you. I will tell you that using nutra sweet and cell phones can trigger seizures because they cause more electrical activity in the brain as well and eating to many sweets and starch foods. The reason why your arms are jerking around is because it's a motor type of seizure causing your body to move around without control. That's the reason why you you have the eye movement also. As far as the laughing it sounds like the seizure might be starting in the Right temporal lobe since that's the area of the brain that shows emotions and the same area where music is. Try taking vitamin B12 1000 mcg. a day and see if that helps until you see a neurologist or epileptologist. Here's wishing You Well and May God Bless You! Sue |
hi i too have seizures from sound. Mostly from shopping centres, loud bangs that startle me or if my husband talks to long. Emotion also triggers mine. i have had surgery for a disc that went into my spinal column and nerve damage seems to be there for life. my advise is not to trigger to many seizures if possible, you dont know if causing more damage
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Hello and welcome to NeuroTalk. Great to see you have come to be with us.
There are a great number of fellow members in here for your assists. Just let us know if we can be of any help. I to got a lot of help with a local neurologist and Epileptologist. Again welcome, looking forward to seeing you around. Darlene:hug: |
Welcome to NT
You have a good attitude. That will take you far with life's ups and downs. Some other members know more than I do about your condition. I hope you find something here that helps you understand your condition. We're a good bunch to hang out with. Music is the window to the heart's soul. You sound very gifted. Keep playing if you can, but most importantly, keep smilin' :wink: |
I've heard of them referred to as musicogenic seizures and that's what I have now after surgery. And its almost always heavy metal (only certain notes cause it) at certain tempo's and certain pitches. Classical can too but either way it has to be loud.
I do still get aura's from time to time, but yep, I know what you're talking about. |
Musicogenic seizures
I’ve been reacting negatively to ‘bad’ music in the past couple months, literally fleeing concerts in a panic, fingers in my ears, hunching over trying to block the sound if the treble is too high, or louder than the bass or mids. If the music isn’t ‘equal’ with all parts in line running smooth thru my body in a rhythm it’s unbearable. I have to sit in my car and listen to ‘good’ music to ’smooth’ me out. It’s a drug when it’s good. I can’t turn it off. I am literally trapped in my car, unable to turn it off. I have done laps around my neighborhood, slowly lowing the music until I reach the final conclusion that I HAVE to turn it off. In the past week I started to notice I could NOT keep my eyes open when the sound was good. My head goes back, eyes shut, I’m sure I look like I’m tripping on acid or something. It started happening while driving last night. Now my good music is controlling me. I pulled over, couldn’t stop listening, then I noticed my body tightening, my temples to between by eyebrows straight to the entire top of my brain was in a rolling turmoil not sure whether to enjoy or fight the feeling. It was like a musical orgasm..then I had a seizure. Not my normal partial complex, I was aware, but locked up turned sideways in my car. I figured out that my entire body was trying to ‘balance’ the music because my left front speaker wasn’t working. Muscles under my ear tightened trying block the sound, leaving only the right side to interpret what it was hearing. I reached in desperation for the radio, still undecided whether to enjoy this smooth rolling rush overcoming me, or stop this seizure. I was totally exhausted after and noticed I couldn’t be in a room with lights. I slept with an eye mask in silence. Normally I listen to music. I enjoy any genre of music as long as it’s perfect sound, rhythm, no drops, singer can sing, bass there to balance the treble. I’ve always said a good song has to be felt from the groin to the top of my chest, each area feeling the different parts..bass, mids, treble.. I’m weird I know. I go to 50 concerts a year because music is my drug that fixes me and I’ve found only musicians understand some of what I’m saying.
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Hi scruffy,
Welcome to Neuro Talk what you are describing sounds like you are having audio and possibly photosensitive seizures just like I mentioned to Maya. What's happening with you is that the right temporal lobe of your brain is taking control of you and causing the seizures. The reason why I say it's the right temporal lobe of your brain is because that's the area of a persons brain that controls music. How we listen to it, play instruments, sing, etc. anything related to music is controled my the right temporal lobe. The next time this happens to you take a cold wash cloth and put it on your face and the back of your neck this will stop the neurons in the brain from firing up and leading into a seizure. Here's wishing you well and May God Bless You! Sue |
Thank heavens for this board and you all.
I've been wondering for some time why I've gradually avoided music more and more, to the point where I can't stand to listen to any at any time. I've loved music all my life, had musical training, played in orchestras, sang in groups, etc. Now that has changed entirely. It didn't dawn on me that my avoidance might be related to my seizures. |
First of all, thanks a lot to you who replied to this topic. I really appreciate it :) It's nice to hear that someone is actually taking me seriously..
Quote:
I got rid of my hyperacusis almost completely, but now I'm stuck with this b***crap :Bang-Head: This change happened almost within a week after my hyperacusis started getting better, so I still think there's a connection. Of course I can't be sure, since I avoided music a lot more when I was sound sensitive... But Scruff, I'm... kind of confused by your statement that not everyone gets what your talking about when you said that music has to be 'felt'... I know exactly what you are talking about, in fact, I thought that was the normal reaction? :S can somebody please clear this up for me? |
Here are all the Specs on Sounds and Epilepsy.
Musicogenic is related to REFLEX or GELASTIC
Seizures / Epilepsy "Family". YES, one can hear sound - to be more specific, they come in Hertz (Hz) and Frequencies. Hertz - pitch Frequencies - depth One can be tripped off at a specific Hertz at a specific Frequency or specific Hz and frequencies; while remainder being of normalcy. An Audiologist working with a Neurologist or Epileptologist will be able to work together in this area to determine the specific range of field. The seizure(s) itself varies from individual to individual, plus how one obtained it also varies from individual to individual. ======================== A little bit about myself, I have this very exact specific nature you are amplifying in this field, being diagnosed at a very, very young age (before 3), then taken to a major University Hospital (they did not have Level 4 Hospitals back in my days) - it was then determine that was the cause and reason. However, we had to return back again for the same test performance; to see if it repeats itself which it did, not only that it affirmed the conclusion that I had mitochondrial - it was not until years later of what type of mitochondrial I have, for that had been recently found and everything have been aligned accordingly and specifically. While what I have is excessively rare, for added insult, due to differing variants and mutants, they will not know until an autopsy is performed after my death. Many others who experiences this, half of them were genetic and others were virtually unknown with the guess work of "high fevers" when they were a child according to some from their family members - so it remains unknown. Nonetheless, we all agree with one thing; it is annoying as heck! What is even worse is, it is a seizure itself before a seizure manifests - not an Aura / Simple Partial; but there are a couple individuals who experienced these when being exposed to a pitch or frequency - which tripped them off. Consider it the same thing of those who are photic (light sensitivity) where strobes, flickering of lights, etc - would trip them off into differing types of seizures. Sometimes such seizures would even secondary generalize while others it just a seizure and does not secondary generalize at all. Are they rare? NO, but it is uncommon, but not rare. I also must add there it impacts both males and females equally, and there is no nationality barriers either. Therefore, it can effect anyone, anywhere, across this planet earth. One might have it and under the false assumption that they are going deaf or some have been misdiagnosed as a couple were, as "tone deaf" until they saw a Neurologist and it showed up on the EEG and Radiology scans and other tests were run. Is Surgery necessary? YES and NO - depending on where it is originating from, and to answer the other question: Why am I being sent to an E.N.T. (Ear, Nose, Throat) Surgeon or Specialist? The Surgeon will work together with the Neurologist or Epileptologist and/or Neurosurgeon. As implied, it all depends on where the problem is originating from. Some can be corrected, some cannot. The other question of "I hear things" but I am not seizing but when I tell people what I hear they give me funny looks or think I am a "nut case" ... No, you are not a nut-case - did you actually "hear things", the answer is YES, but how? For example, you heard classic music on the radio, only it was distorted, for a short span, then it went away ... but no one was playing the radio (as it were in my case). One would be able to hear odd, distorted, strange noise, or even in some cases, repetitive noises - where they can be misdiagnosed as tinnitus when it is not for it only lasted but for a moment - a sure sign is, the headache that typically follows after wards as well as the sudden development of light sensitivity, as well as vertigo (dizziness), nausea with or without vomiting, other signs, especially if one had experienced a "hard hit" would be: staggering gait (walk), slurred speech, disorientation, blanking out or zoned out or spaced out, the feeling of being there but not there but somewhere in outer space, sensitivity to light, headache, and others not listed. If such arises - you should speak to the Physician and to the Neurologist / Epileptologist. Make a log of this, every time you remember having such occurrences; if you are aware or unaware and/or if there are any witnesses, what were you doing (your behavior) - for this logs would help tremendously. If you are into music, knowing the musical keys, and specific keys such as octave Eb always trips you off, then so note it. Or if deep Bass in G, F, and A sends you into a flurries when your buddy plays that electric guitar and cranks the bass up ... WRITE IT DOWN! Even if a Violin, Piccolo, Oboe - sends you up the wall and you do not know why (it would the the pitch and frequencies). As for "hearing in your brain", such as electrical cracking, zapping, so forth - note it down. You are not crazy or losing you mind at all; it really is there, they have captured these on EEG's on my end; even though I am profoundly deaf now (115-120 dB (decibels)... cannot even hear a Boeing Jet Engine) - yet, I can hear these obnoxious and annoying things once in a blue moon for my AEDS are working - for when I was young, I was not on AEDS, so I suffered through it much. NOTE: It is TRUE that sometimes this can be a result of a side effect of an AED (Anti-Epileptic Drug) that one may be taking if one is on it. |
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