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Wondering if son has temporal lobe epilepsy after what he told me.

Mon, 09/02/2013 - 16:04

I'll try to make this brief.  My son is 21 and going through a difficult time with anxiety, OCD with intrusive thoughts.  etc.  He recently told me that he has ALWAYS had visual hallucinations.  I can't remember specifics on auditory hallucinations but I think they have been around for a very long time too. 

We can pinpoint these to his early childhood because one involves a neighbor's house that is no longer there.  In other words, he had the hallucination while the house was there, and years later when the house wasn't there, he remembered his hallucination of there being a field across the street.  When the house was gone and he saw the field, he thought his visual hallucination was a premonition.  He never told anyone about his visual hallucinations because he wasn't bothered by them, thought they were normal, knew they weren't real, thought he had a creative imagination.

Basically, he says that sometimes when he's looking at something the entire view will complete switch briefly to a hallucination.  Let's use the house across the street.  He was standing on our porch watching his father and friend talking.  He can remember the exact conversation they were having.  Suddenly, the house across the street was gone and there was a huge empty field across the street.  It was brief.  He thought it was weird and cool.  Never mentioned it like he never mentioned any of his hallucinations.  A few years later, the neighbor's house burned down because the neighbor knocked over a candle.  When the house was leveled and grass was planted, my son remembered that specific hallucination. 

Three years ago, he asked me if I heard my thoughts.  Apparently he has been asking his friends for years if they heard their thoughts.  They all thought in pictures.  He says he always heard sounds and his thoughts.  We can pinpoint this to early childhood too because he remembers worrying if the babysitter could hear his thoughts when he was little.  He remembers testing it by thinking things to her and she didn't respond.  But I guess three years ago he became disturbed by hearing all of this because he started having intrusive thoughts. 

The reason he told me about his life-long visual hallucinations is because he was experiencing deja vu recently.  He thought his previous visual hallucination of the house was deja vu.  He has also been having feelings of nothing being familiar---but usually when he wakes in the middle of the night and is half asleep.  Looking up deja vu is how I learned temporal lobe epilepsy. 

He has had headaches his entire life.  When he was in 4th grade, his pediatrician ordered an MRI looking for brain tumors.  It was normal. 

I have seen the blank stare multiple times since 9th grade.  I strongly believed that these are associated with anxiety and panic attacks.  I don't remember blanks stares earlier in his life though but my memory isn't as good as it used to be.

My husband and I remember at some time between 1st and 4th grade, we had to replace his TV with a smaller one because it caused some problems.  My husband, not his biological father, has a sister with full fledged epilepsy so he knew right away that my son's experience with the TV wasn't right and switched his TV. 

He recently had a concussion and his psych symptoms have gotten worse.  He may have cerebral fluid leak because clear drainage is in his one ear every morning when he wakes up.  He has an appointment with a neurosurgeon next week to initiate the diagnosis of this drainage.

My main problem is that I don't know where to go from here.  His PCP, who is a highly respected and talented internist, is treating him for his psych issues because my son does not like mental health professionals.  I feel I need to tell his PCP about this, but I think I will sound like I'm going off the deep end researching my son's symptoms.  I'm also fearful that it will be misinterpreted as mental illness without ruling out epilepsy.  My husband thinks I should tell his doctor. 

I haven't told my son.  I didn't make a big deal about what he told me about the visual hallucinations. I just reassured him.  After all, it isn't something that ever bothered him so I don't want to put fears into his mind.  It was more like "thinks that make you go hmmmm..." afterwards and I started trying to find information about it. 

Can anyone relate to my son's experiences here?  Or do I sound completely off track?   

Comments

Re: Wondering if son has temporal lobe epilepsy

Submitted by rebecca145 on Tue, 2013-09-03 - 10:55

Hi,

I am 21 and i was diagnosed with temporal lobe epilepsy a few years ago. I think that its important for you to talk to your son about your concerns, he may act like these things are not bothering him but from personal experience they probably are. I know that from a very young age i experienced things that no one else around me did. I had deja vu and visions similar to what you described, as well as blank stares, migraines and vivid dreams. However after being looked at like a freak by my friends when explaining the deja vu i was too scared to tell anyone.

Talk to him and talk to his doctor, im sure he is aware that these experiences are not 'normal' if such a thing exists. If it turns out to be nothing serious then thats great, but ignoring it isnt good I know from experience, i tried for a long time to pretend that it didnt bother me that i was different but it did bother me and i knew it was stange. If my mother was aware im sure my diagnosis would have been made sooner. 

If it is temporal lobe epilepsy it can get worse if it goes without treatment so i strongly reccomend you talk to him about it and see how he feels, you can be sensitive and supportive while still being serious about his symptoms. You may be right it may never have bothered him before or it may have bothered him soo much he was too scared or insecure to talk about it, I know i was. 

I Hope everythink works out well, Good Luck!

Hi,

I am 21 and i was diagnosed with temporal lobe epilepsy a few years ago. I think that its important for you to talk to your son about your concerns, he may act like these things are not bothering him but from personal experience they probably are. I know that from a very young age i experienced things that no one else around me did. I had deja vu and visions similar to what you described, as well as blank stares, migraines and vivid dreams. However after being looked at like a freak by my friends when explaining the deja vu i was too scared to tell anyone.

Talk to him and talk to his doctor, im sure he is aware that these experiences are not 'normal' if such a thing exists. If it turns out to be nothing serious then thats great, but ignoring it isnt good I know from experience, i tried for a long time to pretend that it didnt bother me that i was different but it did bother me and i knew it was stange. If my mother was aware im sure my diagnosis would have been made sooner. 

If it is temporal lobe epilepsy it can get worse if it goes without treatment so i strongly reccomend you talk to him about it and see how he feels, you can be sensitive and supportive while still being serious about his symptoms. You may be right it may never have bothered him before or it may have bothered him soo much he was too scared or insecure to talk about it, I know i was. 

I Hope everythink works out well, Good Luck!

Re: Wondering if son has temporal lobe epilepsy

Submitted by Missy Muffet on Wed, 2013-09-04 - 03:20

Thank you for sharing.  I will talk to him the next time the opportunity arises.  If I approach him about it while he's doing fine, he gets stressed because the subject ruins a good day.  If he's doing super bad, it's not the right time either.  He needs to bring up deja vu or something else again.

I have a question for you.  Last week, we were driving in the car at night.  He suddenly freaked, was holding his head, telling me to slow down (I was only going 30), and complained about the lights of other cars, and his head hurt like it never hurt before.  I tried to take him to the emergency room, but he refused.  We got home and it got bad again so he agreed to go to the ER.  Once we were in the ER parking lot, he refused to go in saying he felt better. 

Have you ever experienced anything like that? 

Thank you for sharing.  I will talk to him the next time the opportunity arises.  If I approach him about it while he's doing fine, he gets stressed because the subject ruins a good day.  If he's doing super bad, it's not the right time either.  He needs to bring up deja vu or something else again.

I have a question for you.  Last week, we were driving in the car at night.  He suddenly freaked, was holding his head, telling me to slow down (I was only going 30), and complained about the lights of other cars, and his head hurt like it never hurt before.  I tried to take him to the emergency room, but he refused.  We got home and it got bad again so he agreed to go to the ER.  Once we were in the ER parking lot, he refused to go in saying he felt better. 

Have you ever experienced anything like that? 

Re: Wondering if son has temporal lobe epilepsy

Submitted by Missy Muffet on Wed, 2013-09-04 - 03:20

Thank you for sharing.  I will talk to him the next time the opportunity arises.  If I approach him about it while he's doing fine, he gets stressed because the subject ruins a good day.  If he's doing super bad, it's not the right time either.  He needs to bring up deja vu or something else again.

I have a question for you.  Last week, we were driving in the car at night.  He suddenly freaked, was holding his head, telling me to slow down (I was only going 30), and complained about the lights of other cars, and his head hurt like it never hurt before.  I tried to take him to the emergency room, but he refused.  We got home and it got bad again so he agreed to go to the ER.  Once we were in the ER parking lot, he refused to go in saying he felt better. 

Have you ever experienced anything like that? 

Thank you for sharing.  I will talk to him the next time the opportunity arises.  If I approach him about it while he's doing fine, he gets stressed because the subject ruins a good day.  If he's doing super bad, it's not the right time either.  He needs to bring up deja vu or something else again.

I have a question for you.  Last week, we were driving in the car at night.  He suddenly freaked, was holding his head, telling me to slow down (I was only going 30), and complained about the lights of other cars, and his head hurt like it never hurt before.  I tried to take him to the emergency room, but he refused.  We got home and it got bad again so he agreed to go to the ER.  Once we were in the ER parking lot, he refused to go in saying he felt better. 

Have you ever experienced anything like that? 

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