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Wondering if son has temporal lobe epilepsy after what he told me.
Mon, 09/02/2013 - 16:04I'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
Dear missy This is beyond
Submitted by mereloaded on Wed, 2013-09-04 - 20:07
Re: Dear missyThis is beyond
Submitted by Missy Muffet on Wed, 2013-09-04 - 22:22
I really wish people could understand that I can't force my son into treatment. I haven't been legally allowed to do that since he was 13. He started refusing mental health treatment after a bad experience with antidepressants and a psychiatrist when he was 15. I was not able to get him to go to ANYONE until he turned 18 and agreed to talk to my PCP. Then he only agreed to try antianxiety medication and refused antidepressants for 3 years. Here I am no with him being 21 years old and worst symptoms. I have to go the PCP route because it's my only hope of getting him to accept going to a specialist. He will respect the PCP's suggestion to see a neurologist or neurosurgeon. He will NOT see a psychiatrist. There's no way, no how I can motivate him.
Geeze, he desperately needs to have 6 teeth extracted (four wisdom and two molars) and he won't even go to the surgery days scheduled. He went to initial appointment, but chickened out for the first surgery on Tuesday. It was rescheduled for tomorrow morning and he won't go then either. Now I have the uncomfortable problem of my son hogging up valuable surgery time for a doctor twice in the same week. I doubt they'll reschedule so I'll need to find another oral surgeon. We'll probably go through this for months before he gets the courage to have his damn teeth removed.
So, I assure you that I'm not fearful of seeking specialist treatment for my son. I'd fly him to Yale if I thought he would go.
I really wish people could understand that I can't force my son into treatment. I haven't been legally allowed to do that since he was 13. He started refusing mental health treatment after a bad experience with antidepressants and a psychiatrist when he was 15. I was not able to get him to go to ANYONE until he turned 18 and agreed to talk to my PCP. Then he only agreed to try antianxiety medication and refused antidepressants for 3 years. Here I am no with him being 21 years old and worst symptoms. I have to go the PCP route because it's my only hope of getting him to accept going to a specialist. He will respect the PCP's suggestion to see a neurologist or neurosurgeon. He will NOT see a psychiatrist. There's no way, no how I can motivate him.
Geeze, he desperately needs to have 6 teeth extracted (four wisdom and two molars) and he won't even go to the surgery days scheduled. He went to initial appointment, but chickened out for the first surgery on Tuesday. It was rescheduled for tomorrow morning and he won't go then either. Now I have the uncomfortable problem of my son hogging up valuable surgery time for a doctor twice in the same week. I doubt they'll reschedule so I'll need to find another oral surgeon. We'll probably go through this for months before he gets the courage to have his damn teeth removed.
So, I assure you that I'm not fearful of seeking specialist treatment for my son. I'd fly him to Yale if I thought he would go.
Re: Don't believe the first neurologist you meet
Submitted by Missy Muffet on Wed, 2013-09-04 - 17:07
I can't even begin to figure out how I can identify the "Dennis Spencer of Pittsburgh, Pennsylvania" When I called neurology and neurosurgery departments here to find out who was the best doctor to schedule an appointment with for cerebral fluid leaks, even these departments weren't sure.
I'm just feeling overwhelmed right now. I'll pull myself together and figure it out.
I can't even begin to figure out how I can identify the "Dennis Spencer of Pittsburgh, Pennsylvania" When I called neurology and neurosurgery departments here to find out who was the best doctor to schedule an appointment with for cerebral fluid leaks, even these departments weren't sure.
I'm just feeling overwhelmed right now. I'll pull myself together and figure it out.