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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 Masterjen on Mon, 2013-09-02 - 21:07
Glad I could help!  For 3 years I have had nocturnal seizures, and for the first year and a half I was misdiagnosed because my seizures were not  the classic convulsion type.  It wasn't until I got in to see a seizure specialist (epileptologist) that I was properly diagnosed.  So, I know the value of seeing the right person.  Something is going on, so if your son does have seizures or does not, the seizure specialist is a good place to start.  Best wishes to you and your son!

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Submitted by Missy Muffet on Tue, 2013-09-03 - 08:25

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Re: Wondering if son has temporal lobe epilepsy

Submitted by Missy Muffet on Tue, 2013-09-03 - 02:55

My thanks to both of you.  It helps to be validated that something might not be right.

The mention of Alzheimer's is something I recently stumbled upon.  His paternal aunt has early onset Alzheimer's.  She developed it 10 years ago.  Since our son doesn't know her, we decided to postpone telling him about it since there is no cure.  I will let the PCP know he has a second degree relative with it though. 

I do need to have a serious talk with the PCP alone.  I can't relay this over the phone via his nurse.  I can't talk about all of these things in front of my son at an appointment.  I'm going to need to schedule an appointment for myself so I can be alone with the doctor to explain everything the best I can. 

I'll start the diary for now.  Hopefully I can get him to talk about them again without tipping him off that I'm concerned.  Interestingly, when I told my husband about the field/house hallucination, my husband got excited and said he should keep a journal because of people like Nostradamus.  I was so surprised my husband believes in that stuff.  But that's not the way to inspire him to keep a journal.  The last thing we need is his thinking he is predicting the future, especially since some of his visions aren't pleasant.  They haven't worried him in the past, and I don't want to do anything that will cause him to start worrying about them now. 

I think the best way to inspire him at this point is to share with him how many famous writers had similar experiences to his.  I'll play up his belief that it's an active imagination.  He's a good writer.  Who knows.  He doesn't have access to the internet right now because he has fear of technology because he doesn't trust his mind right now.  It's not psychosis paranoia.  He describes it as paranoia ABOUT people finding out about his neurosis.

I know it seems odd I'm keeping so much from him, but he's in a very fragile stage right now.  He has improved significantly over the past two months.  I don't want to unnecessarily set him back with something to worry about when he's working on so many other things. 

 

 

My thanks to both of you.  It helps to be validated that something might not be right.

The mention of Alzheimer's is something I recently stumbled upon.  His paternal aunt has early onset Alzheimer's.  She developed it 10 years ago.  Since our son doesn't know her, we decided to postpone telling him about it since there is no cure.  I will let the PCP know he has a second degree relative with it though. 

I do need to have a serious talk with the PCP alone.  I can't relay this over the phone via his nurse.  I can't talk about all of these things in front of my son at an appointment.  I'm going to need to schedule an appointment for myself so I can be alone with the doctor to explain everything the best I can. 

I'll start the diary for now.  Hopefully I can get him to talk about them again without tipping him off that I'm concerned.  Interestingly, when I told my husband about the field/house hallucination, my husband got excited and said he should keep a journal because of people like Nostradamus.  I was so surprised my husband believes in that stuff.  But that's not the way to inspire him to keep a journal.  The last thing we need is his thinking he is predicting the future, especially since some of his visions aren't pleasant.  They haven't worried him in the past, and I don't want to do anything that will cause him to start worrying about them now. 

I think the best way to inspire him at this point is to share with him how many famous writers had similar experiences to his.  I'll play up his belief that it's an active imagination.  He's a good writer.  Who knows.  He doesn't have access to the internet right now because he has fear of technology because he doesn't trust his mind right now.  It's not psychosis paranoia.  He describes it as paranoia ABOUT people finding out about his neurosis.

I know it seems odd I'm keeping so much from him, but he's in a very fragile stage right now.  He has improved significantly over the past two months.  I don't want to unnecessarily set him back with something to worry about when he's working on so many other things. 

 

 

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