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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: Your son might have or had

Submitted by Missy Muffet on Wed, 2013-09-04 - 03:15

My biggest concern about schizophrenia is the mental health community seems to throw up its hands and give patients "death sentences" by telling them they'll never have productive, successful lives, nor every marry.  It seems like the approach is so doom and gloom instead of truly trying to help people with schizophrenia. 

My biggest concern about schizophrenia is the mental health community seems to throw up its hands and give patients "death sentences" by telling them they'll never have productive, successful lives, nor every marry.  It seems like the approach is so doom and gloom instead of truly trying to help people with schizophrenia. 

Re: Your son might have or had

Submitted by Missy Muffet on Wed, 2013-09-04 - 03:11
Thank you for your post.  I just want to clarify that I'm not the one avoiding mental health professionals.  My son had a bad experience with a psychiatrist and a side effect to antidepressants when he was a minor, and he has refused mental health treatment ever since.  I live in a state where minors can refuse treatment when they're 13 years old.  I wasn't able to get him any treatment until he turned 18, and my PCP agreed to try to help. 

Time for the specialists!

Submitted by Silvergoldman on Tue, 2013-09-03 - 21:04
I agree with the person who mentioned what you are talking about sounding a lot like schizophrenia. I can relate to a lot of what you wrote and I have epilepsy and schizoaffective disorder. It is possible to have both conditions just to let you know. I wish I would have gotten the psychiatric help I needed in my early 20's instead of waiting and having my whole life implode in my late 20's. I told my mom about different symptoms in college but she got me zero help. My family likes to take the ostrich approach to life. Speaking from personal experience, the hallucinations start off not so bad and not so invasive and just get worse, more frequent and more invasive. Please get your son into the psychiatrist before the hallucinations totally take over and you can't reason with him anymore. Your son also needs to see a neurologist, preferably one specializing in epilepsy to see what is going on with the possible seizure activity. The specialists are there for a reason, use them.

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