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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 mereloaded on Fri, 2013-09-06 - 09:14
Ok, so he won't go to specialized cared, however, please keep in mind that he is unable to make health decision for himself as his judgement is impaired. You cannot leave it up to him to get appropriate help because he can't under his current state. Please don"t wait until something bad happens to realize this. There are ways to get him help, including seeking conservatorship of his health care decisions. This is standard procedure when you care for people that cannot make such decisions for themselves. Just wanted to let you know. Best of luck

UPDATE: We went to the neurosurgeon's office this morning....

Submitted by Missy Muffet on Mon, 2013-09-09 - 18:19

My husband joined us for the appointment.

My son bailed out while we were in the waiting room and refused to see the doctor.

I was ready to move out of the house when we got home. 

My husband fully supported my leaving for a few months. 

My son begged me to stay and promises to go back to the neurosurgeon. 

But now he'll be going in there after making a fool of himself so I'm not sure what use it will be.

I'm just super tired of all of this.  I can't save someone who refuses to save himself. 

Thank you for all of your advice and encouragement.  I'm sorry it didn't work out the way we all hoped. 

My husband joined us for the appointment.

My son bailed out while we were in the waiting room and refused to see the doctor.

I was ready to move out of the house when we got home. 

My husband fully supported my leaving for a few months. 

My son begged me to stay and promises to go back to the neurosurgeon. 

But now he'll be going in there after making a fool of himself so I'm not sure what use it will be.

I'm just super tired of all of this.  I can't save someone who refuses to save himself. 

Thank you for all of your advice and encouragement.  I'm sorry it didn't work out the way we all hoped. 

Re: UPDATE: We went to the neurosurgeon's office

Submitted by Masterjen on Mon, 2013-09-09 - 21:08
Hi, Missy - so sorry it didn't work out the way you'd hoped.  If your son is willing to go back, I'd say go for it.  You found his weak point (ie. him not having you around) and although it may sound cruel, I'd say use his weak point to your advantage if it means another chance at getting him the help he needs.  I work in a doctor's office, and they get people who back out at the last minute from time to time, usually due to intense fear.  The doctors respect this, and are more than willing to see the patient again.   If he doesn't go back, follow through on your plan to move out . . . even if it is just for a few days.  Sounds like you could use a well-deserved a break! 

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