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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 Thu, 2013-09-05 - 01:05

Hi, Missy

I hope you are hanging in there okay.  There are a lot of posts here, with a lot of concerned readers!  I just wanted to add to all this to not forget to keep the lines of communication open between you and your son.  He seems to see you as his confidente, he trusts you.  He has a lot of frightening things going on but he is talking, at least to you.   You are his life-line; above all else, keep that connection!  Best, best wishes to you!

Hi, Missy

I hope you are hanging in there okay.  There are a lot of posts here, with a lot of concerned readers!  I just wanted to add to all this to not forget to keep the lines of communication open between you and your son.  He seems to see you as his confidente, he trusts you.  He has a lot of frightening things going on but he is talking, at least to you.   You are his life-line; above all else, keep that connection!  Best, best wishes to you!

Re: Wondering if son has temporal lobe epilepsy

Submitted by Missy Muffet on Thu, 2013-09-05 - 14:05

Thank you.  I do keep the lines of communication open.  I know I'm the only person he confides in.  I have to be careful.  I have to wait for him to share. He isn't receptive if I broach subjects.  I either ruined a good day by brining something up or it makes him wonder if I'm worried about something he isn't worried about.

Example. 

This morning, I talked to him about downloading some of the games he wants off of the internet because I'm cancelling the internet service to the house.  He has a fear of the internet, phones, etc.  As a result, he will only play games on his computer if his father or I sit in the room with him.  By getting rid of the internet, he can have some more freedom in the day without needing constant supervision. 

This conversation lead me to comment that he seems to be improving.  He agreed and started to list off that the intrusive thoughts are subsiding and he's getting better at sending them away instead of obsessing about them and getting upset.  He says he still has his worries but his worries are subsiding.  He said that he has periods of time when he isn't worrying about a thing---for like an evening when he was with his father and suddenly a worry hopped into his head.  In the past, he could go a month without a worry and then he'd find something to worry about. 

From what I understand, he has worries (worries about everything), racing thoughts (which he actually likes because they help him be creative) and intrusive thoughts (which horrify him).  He says the worst is when the intrusive thoughts start racing.  I think that's where he was at when he came to me for help two months ago.  The antidepressants help the racing thoughts.  He's dealing with worries (which are subsiding) and intrusive thoughts (which seem to be subsiding too.

I asked him if he has experienced anymore deja vu or the opposite of deja vu since he had a few of those last week (at the same time period as the day he had an episode in the car at night due to the oncoming headlights).  He said he hasn't had any deja vu or feeling the opposite of deja vu.  He said the waking up and nothing feeling familiar is when he takes benedryl.  That's his opinion on that matter.  So I mentioned the house/field in the context of deja vu in the sense of trying to say I didn't think that was deja vu or premonition but just a coincidence. 

This is when he got worried.  Why am I bringing that up?  Am I worried about that?  I said no, I was just trying to say I thought it was a coincidence.  He said he didn't bring it up so why did I.  He then said it was nothing that ever bothered him and still doesn't bother him.  He says it's just imagining things while daydreaming and sometimes those things end up happening.  He equated it to being no different than my thinking it would be nice if people had portable phones to make phone calls on the bus back in the early 80s, and then a month later everyone was walking around with cell phones.  So it seems he is now describing what I called visual hallucination as "imagining while daydreaming." 

We got off of that discussion because I wasn't getting anywhere.  I couldn't ask him outright if they were complete changes of scenery like it seemed he was saying the other day. 

He shared he didn't sleep well because he kept waking up drenching wet.  He has always been a child that sweated at night.  His whole life he would drench the bed.  If we picked him up to move him, he was always soaked.  I'm not sure if this is relevant to his problems or not but I'm noting it in the diary everyone encouraged me to start.

I called the doctor's office to schedule an appointment to see him by myself.  Still waiting for the receptionist to call me back. 

Thank you.  I do keep the lines of communication open.  I know I'm the only person he confides in.  I have to be careful.  I have to wait for him to share. He isn't receptive if I broach subjects.  I either ruined a good day by brining something up or it makes him wonder if I'm worried about something he isn't worried about.

Example. 

This morning, I talked to him about downloading some of the games he wants off of the internet because I'm cancelling the internet service to the house.  He has a fear of the internet, phones, etc.  As a result, he will only play games on his computer if his father or I sit in the room with him.  By getting rid of the internet, he can have some more freedom in the day without needing constant supervision. 

This conversation lead me to comment that he seems to be improving.  He agreed and started to list off that the intrusive thoughts are subsiding and he's getting better at sending them away instead of obsessing about them and getting upset.  He says he still has his worries but his worries are subsiding.  He said that he has periods of time when he isn't worrying about a thing---for like an evening when he was with his father and suddenly a worry hopped into his head.  In the past, he could go a month without a worry and then he'd find something to worry about. 

From what I understand, he has worries (worries about everything), racing thoughts (which he actually likes because they help him be creative) and intrusive thoughts (which horrify him).  He says the worst is when the intrusive thoughts start racing.  I think that's where he was at when he came to me for help two months ago.  The antidepressants help the racing thoughts.  He's dealing with worries (which are subsiding) and intrusive thoughts (which seem to be subsiding too.

I asked him if he has experienced anymore deja vu or the opposite of deja vu since he had a few of those last week (at the same time period as the day he had an episode in the car at night due to the oncoming headlights).  He said he hasn't had any deja vu or feeling the opposite of deja vu.  He said the waking up and nothing feeling familiar is when he takes benedryl.  That's his opinion on that matter.  So I mentioned the house/field in the context of deja vu in the sense of trying to say I didn't think that was deja vu or premonition but just a coincidence. 

This is when he got worried.  Why am I bringing that up?  Am I worried about that?  I said no, I was just trying to say I thought it was a coincidence.  He said he didn't bring it up so why did I.  He then said it was nothing that ever bothered him and still doesn't bother him.  He says it's just imagining things while daydreaming and sometimes those things end up happening.  He equated it to being no different than my thinking it would be nice if people had portable phones to make phone calls on the bus back in the early 80s, and then a month later everyone was walking around with cell phones.  So it seems he is now describing what I called visual hallucination as "imagining while daydreaming." 

We got off of that discussion because I wasn't getting anywhere.  I couldn't ask him outright if they were complete changes of scenery like it seemed he was saying the other day. 

He shared he didn't sleep well because he kept waking up drenching wet.  He has always been a child that sweated at night.  His whole life he would drench the bed.  If we picked him up to move him, he was always soaked.  I'm not sure if this is relevant to his problems or not but I'm noting it in the diary everyone encouraged me to start.

I called the doctor's office to schedule an appointment to see him by myself.  Still waiting for the receptionist to call me back. 

Re: Wondering if son has temporal lobe epilepsy

Submitted by Masterjen on Thu, 2013-09-05 - 14:52

It is incredibly difficult to get someone to do something they don't want to do, or are afraid to do.  You mentioned he took anti-anxiety medication at some point - does he still?  While this sort of medication is nothing to play around with, would your PCP consider increasing the dose without seeing your son (since he may not go anyway).  If he is, and your son is willing to take it (big "ifs", I know), you may be able to determine if in fact anxiety is contributing to your son's issues.  If the medication works to even a small degree, it may put him in a better frame of mind to deal with his other issues and help him understand the need to seek help and be willing to attend appointments.  I'm no expert, believe me, but just what came to mind after reading your latest post. 

Another thought: is there are college or university near you, with a neurology and/or psychology department?  Any doors you can think of knocking on there may be a key to helping your son as well.  Doctors in hospitals are bound by rules of confidentiality and various codes of ethics (ie. boiling down to meaning some won't speak to you unless your son is present) but a university professor or researcher typically is not, and someone in this setting might be more willing to listen as well as speak more freely and openly with you about your son, and offer advice.

It is incredibly difficult to get someone to do something they don't want to do, or are afraid to do.  You mentioned he took anti-anxiety medication at some point - does he still?  While this sort of medication is nothing to play around with, would your PCP consider increasing the dose without seeing your son (since he may not go anyway).  If he is, and your son is willing to take it (big "ifs", I know), you may be able to determine if in fact anxiety is contributing to your son's issues.  If the medication works to even a small degree, it may put him in a better frame of mind to deal with his other issues and help him understand the need to seek help and be willing to attend appointments.  I'm no expert, believe me, but just what came to mind after reading your latest post. 

Another thought: is there are college or university near you, with a neurology and/or psychology department?  Any doors you can think of knocking on there may be a key to helping your son as well.  Doctors in hospitals are bound by rules of confidentiality and various codes of ethics (ie. boiling down to meaning some won't speak to you unless your son is present) but a university professor or researcher typically is not, and someone in this setting might be more willing to listen as well as speak more freely and openly with you about your son, and offer advice.

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