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hearing voices

Hi everyone. 

Hope you're having a good day.  Hope I don't sound like too much of a "newbie" but that's exactly what I am.

OK, here's my story.

About 4 weeks ago my 16 year old son began complaining about being unable to sleep.  We gave him advice such as lay off the caffine .  Then, on 3/25 he had a seizure at school.  (he has since had one almost every day and two on one day.) During his seizures he has some "twitching" of his arms and legs but has always been able to get to a safe place.  He is able to answer questions with a yes or no or a nod of the head so he never completely looses control. He remains conscious through the seizures and has at least some memory of them though he is very weak afterwards. 

We've taken him to the ER (put him on keppra) and have had an MRI and EEG done.  Neither showed anything.  We're taking him to a neurologist tomorrow and having another EEG done on his orders today.

Maybe the scariest part for us has been the voices.  After he had the first seizure he told us that the reason he hadn't been able to sleep was that he'd heard voices.  Sometimes the voices are gibberish but other time they tell him things (in his own voice) like "your friends dont' really like you" or that the voices are going to hurt his friends of family.  They never tell him to do things and he knows the voices aren't real.

I've read about aura's and know some folks hear voices with seizures, but haven't been able to find much to tell me what the voices actually usually say.  Is what my son is hearing common? 

His behavior hasn't changed except he has become even more attached to his friends/family.  He's a great kid and everybody loves being around him, but this is scary stuff for all of us. 

Any "words of wisdom" from the voices of experience would be much appreciated. 

Comments

Re: hearing voices

I only heard a voice once which said "your the one" which left me rather puzzled at the time, i mean I'm the one what?

All can say about the rest at the mo is watch out for any side effects from any meds he may take, remember if in doubt theres always a telephone in my country I can ring the Epi nurses at any time and they get back to me as soon as they can.  Don't know where you live but I assume you have something simular.

Good luck and best wishes

plopdan u.k 

Re: hearing voices

I often get a ringing in my ears and also hallucinations which were worse on the Lactimal where they got particularty scary especially when its in the night. And must be worse if your younger. Best wishes Bex

Re: hearing voices

I heard like a muffled conversation when I was tegertol years ago. Drove me darn near crazy. People even a few doctors thought I was nuts. That's got to be hard been only 16. Good luck to your kid....x

Re: hearing voices: sorry I pressed the button twice.

I thought that I was the only one that this happened to. I'm a complex parital seizure patient and I hear voices in my head. And there was one time when I swear I heard my father was calling me, but I thought how crazy is that when I live so far away from him. I was on the computer when this happened. I also see things that aren't there. I mean...I could swear one time that I thought that someone was in the room with me. I saw a figure of a person from the left side of my eye,  but when I turn to look no one is there. I was alone in the house so I thought I was going nuts.

My

Re: hearing voices: sorry I pressed the button twice.

Maybe we are all cracking up.  Just be glad we aren't facing
this alone.  I thought I was going crazy but then I decided it's
no good trying to stop myself from going crazy it makes more sense to
give up and save sanity for later

-Douglas Adams Hitch hiker's guide to the galaxy

I haven't lost my marbles I just can't find them

-Katz Heitmann

Don't
mind the voices it's just the rages and the fear that bothers me in
addition to the nightmares I have sometimes.  I thought it was
just PTSD and I could safely ignore it until I had a full blown seizure
in front of the pastor 15 days after my maternal grandma's death and
after a really lousy day.  I have PAs they are just episodes where
you think you are going to die, but it's no big deal:)  Found out
I was crazy and had TLE what a *$%# of a thing to have happen. Oh well
as long as I can laugh at it then it can't be all bad.    

just stared hearing voices this summer....

 

hi everyone, 

i've had epilepsy since i was 14 and now i'm 19 and i take keppra and zonogran and last month i had these crazy hallucinations and i though i was going psycotic and i still hear voices as of now. At least i'm not the only one i also had vivid dreams and kept having deja vu'. i would see ghosts on my street and things float across the room. Is anybody else hear taking zonogran? The voices would sometimes confuse me and say i'm godlike an angel and that i have awareness or that she walks like a supermodel. sometimes i wonder if i have esp. 

 

Re: hearing voices

I thought that I was the only one that this happened to. I'm a complex parital seizure patient and I hear voices in my head. And there was one time when I swear I heard my father was calling me, but I thought how crazy is that when I live so far away from him. I was on the computer when this happened. I also see things that aren't there. I mean...I could swear one time that I thought that someone was in the room with me. I saw a figure of a person from the left side of my eye,  but when I turn to look no one is there. I was alone in the house so I thought I was going nuts.

My

Re: hearing voices

My nine year old son would have horrible night terrors where he would get out of bed and think something was happening to him or someone else in the family. I mean this was scary. this was when he was 7 years old. He would calm down within about 10 minutes. His eyes were open and he was just going crazy. A year later he devoloped what the doctors called benign tic disorder and then had his first seizure on March 26, 2007. He is on Keppra now and has been doing pretty good. He also has Chiari Malformation.

Good luck.

Re: hearing voices

He never told us about the voices until after the first seizure because he thought he was "going crazy." 

You're right, it's pretty terrifying to everyone when your child wakes you up in the early hours hearing voices in his head. 

Re: hearing voices

I agree very scary, but also so related to the epilepsy.

 

Re: hearing voices

I've heard of people hearing voices before having seizures. I think it's part of the aura. I have no experience with it though.

Re: hearing voices

I hear voices, sounds, music....  It makes me feel like I'm crazy!!  It happens right before and during my seizures.  I also stay concious, but the only communication I have with the outside world is that I can make a moan/whine sound.  Other than that, I feel frozen, unable to move a will, even though my jaw is seizing.  As far as I know, its only my jaw.  I can also hear everything around me, just can't say anything back.  And if it gets worse, the outside soudns become distorted, and the fake sounds become louder and clearer, then I feel like I'm having an out of body experience.  I have simple partial seizures.  I'm always extremely tired afterwards.

Re: hearing voices

My son is 19 and hears voices at times. He also has a funny smell in his nose and gets hot flashes just before a seizure. He hasn't had many reportable seizures, but he has had the voices and the funny smell. He is on carbatrol right now, which seems to control things but yesterday he had an episode where he heard an evil voice "screaming" "Im going to kill you" and at the same time another asking him if he was allright. He also said he thought the radio was talking to him. I was really scared but he said he knows its the seizures.

Re: hearing voices

I DONT ALL THE TIME, BUT THERE HAS BEEN SOMETIMES WHEN I DO. ITS NOT ALWAYS TALKING EITHER. SOMETIMES ITS BABIES CRYING, THAT WOULD HAPPEN ALOT AFTER MY DAUGHTER HAD HER TWINS. AFTER I HEARD IT, MY HUBBBY WOULD FIND ME ROOMING THE HOUSE, BUT I HAD NO RECALL OF IT THE NEXT DAY, JUST MY SEIZURE MIGRAINE.

I ALSO GET THE WERD THINGS WHERE I CAN HEAR BUT CANT TALK, AND WHERE I CAN SEE BUT CANT HEAR. ACCORDING TO MY EPI DOC IT DEPPENDS ON WHAT PART OF THE BRAIN IT IS STARTING AT. THE BRAIN IS THE  MOST MYSTERIOUS THING WE HAVE. BUT ANY TYPE OF SIEZURE ACTIVITY IS VERY DRAINING AND MAKES ME VERY TIRED.

THIS IS CAPS FOR VISUALLY IMPAIRED.

God Bless,

banffgirl

life is fragile, handle with prayer.

Re: hearing voices

THANK YOU FOR THE VISUAL IMPAIRED!  I WILL REPLY BACK.  I WAS TRYING A MEDICATION AND I HAD VISUAL HALLUCINATIONS W/ IT.  IT WAS TOPAMAX.    EACH DAY AFTER A PERIOD OF TIME I WOULD TAKE THE MEDICATION I WOULD HALLUCINATE.  SEEING AT THAT TIME THE BABY CRYING,  SEEING A CLOCK ON A WALL, THAT WASN'T THERE, VISUAL SCENES, THAT WERE NOT IN THE HOUSE, THEN I WAS NAUSEATED, THE DOCTOR SAID  WAIT A FEW MORE DAYS.  I DID!  WHEN MY HUSBAND SAW ME, HE BUT ME IN THE ER AND I WAS OFF THE MED. IMMEDIATELY AND IN INTENSIVE CARE.  I STARTED TO HALLUCINATE!  THAT MED. WAS STARTED ON A HIGH DOSE AND SHOULD OF STARTED ON A LOWER DOSE, AND GRADUAL GO UP TO THE HIGH DOSE.

 MY AURAS ARE MANY INITIALLY I USED TO GET WHAT LOOKED LIKE MITOCHONDRIA GROWING OR THROBING IN MY UPPER RIGHT EYE.  NOW THAT I HAVE HAD 2 SURGERIES I HAVE DIFFERENT AURAS ALONGS W./  PERIODIC MITOCHONDRIA.

THANKS

Re: hearing voices

My son has had seizures for the last 13 years. He often hears a "song", but he cannot sing it or describe it for me. Sometimes the song happens prior to the seizure and sometimes during the seizure. He also hears voices talking, but often cannot understand what they are saying. He says they sometimes say he is "dumb" or they laugh at him. His doctors say that the sounds/words come if the seizure begins in a specific part of his brain. He also hears a train sound during his seizures. He has a VNS implant and is on 4 medications yet the seizures continue. The best of luck to you and your son!!

Re: hearing voices

  THERE HAVE BEEN PLENTY OF TIMES WHEN

   I'VE HAD THAT HAPPEN TO ME.  THE FIRST

TIME I WAS 16  YRS OLD GETING READY FOR

SCHOOL AND I STARTED HEARING PEOPLE

SCREAMING IN MY HEAD.  I THOUGHT I WAS

GOING CRAZY.  I  STOPPED AND WENT TO BED

RIGHT BETWEEN MY MOM AND DAD LIKE A

LITTLE BABY.  THAT IS HOW SCARED I GOT.  I

STILL GET THOSE FEELINGS AND THOSE

SOUNDS BUT I LEARNED TO DEAL WITH THEM.

THE DOCTOR PUT ME ON ANTIDEPRESSNTS AND

SOMETHING FOR MY NERVES BESIDES  MEDS

FOR MY REGULAR MED FOR SEIZURES.  BUT

 STILL I HAVE SEIZURES BUT NO GRAND MALS.

BUT I KNOW THE FEELING AND IT CAN BE

SCARY.  GOOD LUCK.

Re: hearing voices

Some people with TLE report having the same problem.  People
with normal EEGs are sometimes having seizures.I'm sorry he's having a
bad time and I'm sorry you are having such a difficult time too. 
It's probably terrifying for all of you and not a barrel of laughs for
him either.  :)  Has anyone run a blood test for
electrolytes.  Was that a high res MRI with the big magnet or one
of the older ones?

The good news is your boy doesn't have a tumor
but the bad news is they don't know what's causing the seizures. Was he
bonked in the head recently? Like did he ever have a head injury of
some kind?  I'd say a video EEG would likely help week long most
likely off the meds.    

Good luck and keep the faith. 

Re: hearing voices

Sorry it took me so long to reply.  Have been busy running from one dr to the next.

In answer to your question, I'm not sure what kind of MRI they did.  As far as blood tests go they did a full battery of them three times.  Also did two EEG's.  None showed anything abnormal.  The good news for us is that the neurologist doesn't think he has epilepsy, a tumor, anything like that.  (due to the test results and some symptoms he has that are not typical of epilepsy.)  He thinks it's something psychological.  So, we've now been to two counselors.  They both think he's having PTSD (post traumatic stress disorder) coming from some severe bullying he went through at his old school.  (absolutely loves his current school.)  There are some other stress's in his life, normal teenage stuff like girls, etc.  All of this piled together kind of overwhelmed him mental/emotionally. 

We started regular weekly counseling yesterday with a counselor who is great.  He's going to see a psychiatrist tomorrow to see if he thinks anti-depressents are called for. 

His episodes have decreased in regularity and severity.  He went to having two or three a day to having none some days and only one or two mild ones on other days. 

 I do want to add that everyone on this site has been top notch.  All of the comments and words of encouragement have been great and have given us at least a little boost when we were at the bottom of that valley.    I have gained a lot of respect and appreciation for those of you who live with this every day.

Thanks to everyone.

Re: hearing voices

My daughter has been hearing voices along with some other issues. We originally thought her medication was getting toxic. But then after it became severe and a hospital stay we learned it was something called Post Ictal Psychosis. She is being treated with a medication called Abilify and it has taken away all her symtoms.

Re: hearing voices

Hi everybody,

I have just joined also as I was looking for sites that spoke about epilepsy and voices and 'voila' here you all are.

I must say that I am relieved that this is a relatively common occurance.  My 16 year old daughter has had epilepsy since she was 18 months old.  The partial complex kind and her seizures are exactly like you are all explaining.  Twitching, but remains conscious and can get herself to a safe place fairly well.  She can also speak although in a disjointed way. 

The last two nights she has come into us saying that there is a shadow in her room that whispers to her, whispers her name and then said that she had her feet on his dead father's head.  Initially I thought it was a dream but then last night she was awake, talking to me and said somebody was laughing at her, snickering and laughing in a deep voice.  I just acted casual as if that was normal as I didn't want to scare her but inside I ws freaking out.  All I could think was schizophrenia.

It sounds like what some of you are going through is just about identical.

How awful, but thank goodness for this site.

Keryn 

 

 

 

 

 

Re: hearing voices

HI AND WELCOME TO E.COM. JUST IN CASE YOU WERENT AWARE OF IT. THERE IS A TEEN GROUP THAT YOUR DAUGHTER CAN ASK OTHER TEENS QUESTIONS ON THEIR FORUM. ALSO CAN CHAT WITH TEENS. ITS A GOOD THING FOR TEENS TO TALK TOGETHER WITH EACH OTHER SO THEY KNOW THEY ARE NOT ALONE. I DIDNT HAVE ANYONE AT THAT AGE. BUT THEN WE DIDNT HAVE THIS SORT OF THING 30 YEARS AGO. BEST OF LUCK TO YOU AND YOUR FAMILY.

CAPS FOR THE VISUALLY IMPAIRED

 GOD BLESS,

BANFFGIRL

LIFE IS FRAGILE, HANDLE WITH CARE.

Re: hearing voices

I had a severe head injury 4 years ago.  After a year I had a sezure and was put on meds.  Following that the meds worked but I would still have the aura and smell and having several flush feelings every hour.  That happens about 4 times a year.  Last month I was watching tv and the people on tv were talking but saying nursery rhymns - I played back the show and I knew I was hearing voices... I joked to my husband but... Yesterday I know my meds were blocking sezures (I had been stressed and working too much).  I was at dinner with friends after attending a wake for a good friend that died...  I felt the flush and smelled the aura.  All of a sudden when they were talking it was words to a song.  I thought I was loosing it!  In the last 48 hours it happend 2 more times.  I slept most of the day sleeping.

I found this site on line and I can't tell you how thankful I am - I really thought I was going crazy.  I worry all the time about it getting worse as I age. 

Jen

Re: hearing voices

I have a very complex brain malformation - without going into this it causes temporal lobe epilepsy and partial/complex partial seizures.

I have, on occasion, heard voices and initially thought I was going mad as the first and only time it happened prior to my initial diagnosis an extremely evil voice shouted "you F!?!!?! C?!?". 

More recently voices have been more positive - today one has said "It's alright" in the distinctive voice of a famous tv personality over here in England  "Anthony Mcpartlane" of Ant and Dec.

Prior to this I have heard all types of voice shout or whisper "Oi you" "Get up" and "Steve". Sometimes the voices are garbled and I cant determine what they say exactly like "ifmm yaw bloor when e yay"   

I can completely understand the "I pressed the button twice" comment on here - I have also had these type of strange sayings by the voices too, but I cant remember specifics.

What I find worse is that because they say unusual things that never make sense or end abruptly for example "go to blue " or "its always the" respectively, that it scares the bejesus out of you and grabs your attention massively as you realise what's just happened and it's not normal at all.

I have been told that this is a part of my condition by a psychologist and therefore I now ignore them, but having had one today clearly my meds are not clearing them up.

The one thing I would say is that if anyone hears hurtful, harmful or nasty voices telling you to do things this may be more of a psychological issue and to get this checked out by a psychologist just incase this is something else.   

Re: hearing voices

Hi Steve,

  My daughter experienced something similar a few years back which is why I looked at Mathew's original post.  Her situation was almost exactly the same as Mathews. She was diagnosed with something called post ictal psychosis caused from her Epilepsy. She was put on a medication called Abilify and after 24 for hours all symtoms were gone. Everyone and every situation is different but that was my daughter experience. I hope it helps, Bill

 

Re: hearing voices

I am new here as well , My big event was in march of  this year when I was taken to the hospital unconcious with continuous complex partial seizures and had completely stopped breathing for about 7 minutes. In the interview with the neurologist it turns ot I have had seizures and aura's for a long time I had no idea what they were. One of my aura's is that I my hearing becomes kind of like voices in a dream and sometimes they are real sometimes not. My uneducated 1.5 cents worth theory is that they are fragments of sounds from our past which maybe persons, t.v., movies, whatever and are being put into our concious mind in garbled fragments by the cross firing mess of neurons that happens inthe seizure. we are not crazy we just have all our wires jumbled up for a few moments. Unkindnesses from our past weather they were directed at us or at someone else tend to make a stronger memory and tend to "stick" especially with children. that may be why  negative words tend to be more prevelant.

just my warped theory

 

Re: hearing voices

I so agree with your thinking

HiI have had epilepsy for

HiI have had epilepsy for five years after I had a stroke. I have heard voices/sounds twice only (fortunately - it it kind of scary). The first time was not long after I was diagnosed with epilepsy. I went upstairs i our house and opened up the door to a room, and I heard a couple of people moaning in the corner of the dark room. I knew there could not be anyone there and managed to put on the light (if I had been home alone that day I wouldn't been so brace - I would have ran out of the house ) The next day I had a seizure and was admitted to the hospital. The second time happened just a couple of days ago. I was out driving (I have my license back) - and suddenly I heard this strange knocking sounds on the roof of the car (as if someone wanted to come in) - my heart pounded - it was scary. 

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Are you going through any

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Are you going through any

Are you going through any kind of spiritual attack or affliction or you want to get your ex husband or wife back? Dr. GURILARICO GURU THE GREAT is a traditional herbal and spiritual doctor that can help you out for free. Contact him to help you solve your problem for you free of charge. He is based in US. And here is his contact details: +1(832) 263-7128, +1(562) 513-6480.Contact: dr.gurilarico@gmail.comHe is always ready to help for free.

Hi I have had epilepsy since

Hi I have had epilepsy since I was a little girl and I still have it and I get voices in my head going off all at once when I have a seizure it's hard to tell what the voices are saying because they are all going off at once it sounds like being in a large croud at a conert I still don't know what the voices are saying if anyone has any information on what the voices might be saying can u let me know please 

it is a little bit late but ı

it is a little bit late but ı can say something. I experienced some voices like you when ı was 15. ı do not remember all voices but ı tried to focus and solve a voice. the last voice was always the same. In Turkish: Öyle yapmasınlar onları, means do not do this thing like this and ı obeyed this rule.ı was doing something which could not be accepted as good behavior. ı did not do that thing ı and now ı am 21 and ı am healthy. Maybe it was a sign that we must change something in our lives. ı don't know your religion but ıf you are a religious person you can understand what ı am saying. ıf you reply ı will be happy because ı am still wondering this mystery, maybe ı was not right. It just a disorder that makes our lives harder.

Hi did you get an answer for

Hi did you get an answer for this?

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