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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?
Re: UPDATE: We went to the neurosurgeon's office
Submitted by Missy Muffet on Tue, 2013-09-10 - 10:08
Thanks for your advice. It was so difficult. We were sitting in the waiting room. I was trying to fill out the patient forums and asked him when the drainage started. He gave me a non-answer and went on about not needing to be there. He just intensified and moved on to attacking me and said I needed to get a life (I wish I could!) and a bunch of other things. I started the cry. Not loud, just a couple of tears. It wasn't like there was a scene. We were alone. My husband said quietly, "Don't cry." My son continued to say nasty things to me, and I calmly gave my husband the parking ticket and said I would wait in the car. They were at the car in 5 minutes. My son told the receptionist he couldn't see the doctor because of "family problems." Great.
We got home and I started to pack. My husband was trying to brainstorm with me about where I will go. He suggested that I contact a friend whose boyfriend is waiting for his lease to run out, suggesting I sublet it from him for the last two months. I told him I didn't think I wanted to stay in the Pittsburgh area---that I needed to get far away but I was in no frame of mind to have the slightest idea where I wanted to go. My husband said he knew me and that I would spend the entire time away worrying about our son. I didn't know if I wanted a cabin in the woods, a small town with cafes, or a big city. I couldn't think. I called my girlfriend and planned to stay with her for a few days so I could have time to calm down and figure out where I wanted to go.
In the meantime, my husband talked to my son who told him that he would go to the neurosurgeon after he got his teeth removed. One of the things I told my son was that I was tired of his bailing on appointments, often all the way when we got to the office. I've never had panic attacks in my life until this crap happens. Anyways, I loaded the car and was saying goodbye. My son said, "Don't go." And I wanted to go so badly. I told him that he was my world for two decades and I did love him very much but I needed a break. My husband reiterated the importance of my needing a break. I finally said I would stay but I needed to visit my friend for the day. My girlfriend lives in another county. I left him for 6 hours and spent 4 hours visiting with my girlfriend. He hadn't been alone without me or my husband for months so this was a big deal.
My girlfriend says don't unpack my car. But I'm going to repack because half the things I packed weren't things I wanted because laundry wasn't done. I can take this time to formulate a plan of exactly where I will go if I need to leave.
So, my plan is this. My son is getting his teeth removed on Thursday. I will have him call the neurosurgeon's office himself today or tomorrow to reschedule for when he will be recovered from the dental surgery. He needs to start taking personal responsibility for the appointments. It seems he finally understands the importance of this appointment with the neurosurgeon.
Thanks for your advice. It was so difficult. We were sitting in the waiting room. I was trying to fill out the patient forums and asked him when the drainage started. He gave me a non-answer and went on about not needing to be there. He just intensified and moved on to attacking me and said I needed to get a life (I wish I could!) and a bunch of other things. I started the cry. Not loud, just a couple of tears. It wasn't like there was a scene. We were alone. My husband said quietly, "Don't cry." My son continued to say nasty things to me, and I calmly gave my husband the parking ticket and said I would wait in the car. They were at the car in 5 minutes. My son told the receptionist he couldn't see the doctor because of "family problems." Great.
We got home and I started to pack. My husband was trying to brainstorm with me about where I will go. He suggested that I contact a friend whose boyfriend is waiting for his lease to run out, suggesting I sublet it from him for the last two months. I told him I didn't think I wanted to stay in the Pittsburgh area---that I needed to get far away but I was in no frame of mind to have the slightest idea where I wanted to go. My husband said he knew me and that I would spend the entire time away worrying about our son. I didn't know if I wanted a cabin in the woods, a small town with cafes, or a big city. I couldn't think. I called my girlfriend and planned to stay with her for a few days so I could have time to calm down and figure out where I wanted to go.
In the meantime, my husband talked to my son who told him that he would go to the neurosurgeon after he got his teeth removed. One of the things I told my son was that I was tired of his bailing on appointments, often all the way when we got to the office. I've never had panic attacks in my life until this crap happens. Anyways, I loaded the car and was saying goodbye. My son said, "Don't go." And I wanted to go so badly. I told him that he was my world for two decades and I did love him very much but I needed a break. My husband reiterated the importance of my needing a break. I finally said I would stay but I needed to visit my friend for the day. My girlfriend lives in another county. I left him for 6 hours and spent 4 hours visiting with my girlfriend. He hadn't been alone without me or my husband for months so this was a big deal.
My girlfriend says don't unpack my car. But I'm going to repack because half the things I packed weren't things I wanted because laundry wasn't done. I can take this time to formulate a plan of exactly where I will go if I need to leave.
So, my plan is this. My son is getting his teeth removed on Thursday. I will have him call the neurosurgeon's office himself today or tomorrow to reschedule for when he will be recovered from the dental surgery. He needs to start taking personal responsibility for the appointments. It seems he finally understands the importance of this appointment with the neurosurgeon.