Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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 Wed, 2013-09-04 - 15:44

Hi,

I understand that it its difficult for you and is probably very difficult for your son i know i was terrified that people would think i was crazy, so i understand his unease with the subject i just think its important for him to be involved in his own diagnosis whether its epilespy, a mental disorder or a mixture of both. Im not sure if this will reasure you but i definately think in words. It is in a different way to your son but before i started my medication i would think rather than speak sometimes unaware that i wasnt actually saying what i was thinking believing that people could hear me, i would also have conversations with myself in my head, not normal i know. That has completly stopped now. That doesnt mean that you should take your sons symptoms as epilepsy and neither should he, it just means you need to talk to him and his doctors about all his symptoms to figure out whats wrong. I just think that as an adult he deserves to be involved and if it is a mental disorder or mixture then you discussing these symptoms behind his back might not help his mental state. 

As for your question i have experienced something similar but not the same, i used to have severe migraines that caused extreme sensitivity to movement and light, to the point where any light or movement at all caused extreme pain and nausea, i have never been in a moving car when one hit but i can imagine it would be very painful. However the refusal to go to the hospital is different, that may be due to something else iv never felt that way, but im not usually scared of hospitals. My migraines also usually last at least a few hours and a dark room is my only relief, but everyone is different. The only way to get an accurate idea of whats going on is to talk to a specialist and inform them of everything, that way they can do the right tests. Plus people get migraines without being epileptic, it depends on the situations and sensations, only a specialist can advise you properly.

Have you tried suggesting a site like this to your son? It may help, give him a chance to talk about how he feels and whats going on without fear, he doesnt even need to use his own name.  You obviously care about your son and we are just here to help and offer advice and support when you need it. If you have any more questions feel free to ask. 

Hi,

I understand that it its difficult for you and is probably very difficult for your son i know i was terrified that people would think i was crazy, so i understand his unease with the subject i just think its important for him to be involved in his own diagnosis whether its epilespy, a mental disorder or a mixture of both. Im not sure if this will reasure you but i definately think in words. It is in a different way to your son but before i started my medication i would think rather than speak sometimes unaware that i wasnt actually saying what i was thinking believing that people could hear me, i would also have conversations with myself in my head, not normal i know. That has completly stopped now. That doesnt mean that you should take your sons symptoms as epilepsy and neither should he, it just means you need to talk to him and his doctors about all his symptoms to figure out whats wrong. I just think that as an adult he deserves to be involved and if it is a mental disorder or mixture then you discussing these symptoms behind his back might not help his mental state. 

As for your question i have experienced something similar but not the same, i used to have severe migraines that caused extreme sensitivity to movement and light, to the point where any light or movement at all caused extreme pain and nausea, i have never been in a moving car when one hit but i can imagine it would be very painful. However the refusal to go to the hospital is different, that may be due to something else iv never felt that way, but im not usually scared of hospitals. My migraines also usually last at least a few hours and a dark room is my only relief, but everyone is different. The only way to get an accurate idea of whats going on is to talk to a specialist and inform them of everything, that way they can do the right tests. Plus people get migraines without being epileptic, it depends on the situations and sensations, only a specialist can advise you properly.

Have you tried suggesting a site like this to your son? It may help, give him a chance to talk about how he feels and whats going on without fear, he doesnt even need to use his own name.  You obviously care about your son and we are just here to help and offer advice and support when you need it. If you have any more questions feel free to ask. 

Re: Wondering if son has temporal lobe epilepsy

Submitted by Missy Muffet on Thu, 2013-09-05 - 14:55

Thanks, I just saw your response. 

I can't suggest a site like this to my son because he's afraid of the internet right now.  He's afraid of telephones, the internet, the windows being open. 

I'm not meaning to talk behind his back to hide anything from him.  I just don't want to talk about things that might cause unnecessary worry.  If I'm totally wrong, I don't see why I should put in his head that it might be epilepsy or anything else.  I figured I would explain what he has told me to the PCP.  If the PCP thinks these things are concerning, then we can decide the best way to broach the subject with my son.   

It's not completely abnormal for me to initially blow off hearing he had deja vu.  Everyone has deja vu at times in their lives.  What concerns me is the deja vu happened within the same days he experienced a few episodes of the opposite of deja vu, along with the headlights while driving eposide.  All of this could be migraines.  Who knows.  I believe the PCP will attribute it all to migraines.  My concern is that I think epilepsy should be ruled out before settling on migraines. 

I'm under a time crunch too.  I resisted putting my son on disability for years before I always had hope he'd overcome his struggles.  Now we're 7 months away from the 22nd birthday deadline to qualify for his father's social security earnings.  My son doesn't want to go on disability.  He has hope for his future too.  But the difference between general social security disability and going on his father's is $500/month instead of $2,500/month.  IF IF IF this is a serious disability, I want to ensure my son has access to money to support himself.  I'm not hoping it's a disability.  I'm hoping this is a temporary set back and he'll lead a happy healthy life in the near future.  But I feel I need to be proactive and be prepared for the worst case scenario so he has the funds to support himself in the future. 

Thanks, I just saw your response. 

I can't suggest a site like this to my son because he's afraid of the internet right now.  He's afraid of telephones, the internet, the windows being open. 

I'm not meaning to talk behind his back to hide anything from him.  I just don't want to talk about things that might cause unnecessary worry.  If I'm totally wrong, I don't see why I should put in his head that it might be epilepsy or anything else.  I figured I would explain what he has told me to the PCP.  If the PCP thinks these things are concerning, then we can decide the best way to broach the subject with my son.   

It's not completely abnormal for me to initially blow off hearing he had deja vu.  Everyone has deja vu at times in their lives.  What concerns me is the deja vu happened within the same days he experienced a few episodes of the opposite of deja vu, along with the headlights while driving eposide.  All of this could be migraines.  Who knows.  I believe the PCP will attribute it all to migraines.  My concern is that I think epilepsy should be ruled out before settling on migraines. 

I'm under a time crunch too.  I resisted putting my son on disability for years before I always had hope he'd overcome his struggles.  Now we're 7 months away from the 22nd birthday deadline to qualify for his father's social security earnings.  My son doesn't want to go on disability.  He has hope for his future too.  But the difference between general social security disability and going on his father's is $500/month instead of $2,500/month.  IF IF IF this is a serious disability, I want to ensure my son has access to money to support himself.  I'm not hoping it's a disability.  I'm hoping this is a temporary set back and he'll lead a happy healthy life in the near future.  But I feel I need to be proactive and be prepared for the worst case scenario so he has the funds to support himself in the future. 

.

Submitted by Missy Muffet on Fri, 2013-09-06 - 15:38

.

.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.