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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
Re: Time for the specialists!
Submitted by 3Hours2Live on Thu, 2013-09-05 - 05:40
Re: Time for the specialists!
Submitted by Missy Muffet on Thu, 2013-09-05 - 14:36
I just saw your post. This forum design is confusing.
Funny you mentioned the Munchausen by proxy syndrome. The ENT implied that when I asked him why there was drainage from his ear after all of the tests came back fine. He first tried to suggest son was putting water into his own ear. When I said it wasn't possible, he said sometimes mothers do stuff to their kids. So I challenged him to test the drainage to see if it was water or cerebral fluid. I hate doctors. This ENT is why I'm worried about talking to the PCP. The ENT made me feel insecure about trying to get to the bottom of what's happening with my son. I needed to come here to get the courage to push forward.
Since he was put on antibiotics for sinus infection and tooth abscesses, it seems the ear drainage as stopped. He has an appointment with a neurosurgeon on Monday regarding the clear discharge from his ear. I'm wondering if I should still keep that appointment since the drainage has stopped.
I just saw your post. This forum design is confusing.
Funny you mentioned the Munchausen by proxy syndrome. The ENT implied that when I asked him why there was drainage from his ear after all of the tests came back fine. He first tried to suggest son was putting water into his own ear. When I said it wasn't possible, he said sometimes mothers do stuff to their kids. So I challenged him to test the drainage to see if it was water or cerebral fluid. I hate doctors. This ENT is why I'm worried about talking to the PCP. The ENT made me feel insecure about trying to get to the bottom of what's happening with my son. I needed to come here to get the courage to push forward.
Since he was put on antibiotics for sinus infection and tooth abscesses, it seems the ear drainage as stopped. He has an appointment with a neurosurgeon on Monday regarding the clear discharge from his ear. I'm wondering if I should still keep that appointment since the drainage has stopped.
Re: Time for the specialists!
Submitted by Missy Muffet on Wed, 2013-09-04 - 03:09
I'm definitely going to talk to the doctor. I'm aware of the possibility that it's schizophrenia. I sure hope it's not. I just feel it's super important to be certain it's not epilepsy before someone just jumps to the conclusion he has schizophrenia.
Intrusive thoughts do happen with sever anxiety disorders and OCD. Up until now, that's the diagnosis we've been operating under. The thoughts get worse when he's under more stress or when depression mixes with his stress. He never mentioned the intrusive thoughts. It wasn't until 3 years ago he mentioned that he heard his thoughts in his head his whole life. They are his thoughts, not someone talking to him. He didn't tell me until a few months ago about the intrusive thoughts and what specific intrusive thoughts were tormenting him.
The PCP was already treating his anxiety with Klonopin for the past 3 years. Son refused antidepressants due to a bad side effects when he was younger. When he talked to me two months ago, I called the doctor at night and the doctor called a prescription in for Zoloft. We've been slowly increasing the dosage to avoid bad side effects. He's at 75mg per day. 200mg is optimum for treating OCD, and we're aiming for as high as he can tolerate. So far, so good. He is making progress everyday. There is an antipsychotic waiting for him at the pharmacy if he ever decides to try it. So far, he hasn't.
I'm not trying to avoid getting him help. I've been trying to find out what's wrong with him for years and years. I'm more afraid of his doctor, who is my doctor, thinking I'm a hypochondriac and not taking my concerns about my son seriously. He's a really good doctor. I'm dealing with my own insecurities about feeling like I have him under a microscope and I'm seeing things that aren't there. I came here for validation that my concerns are justified. Everyone has done a good job of helping me with that. I will definitely call the doctor and go see him to share all of this.
I'm definitely going to talk to the doctor. I'm aware of the possibility that it's schizophrenia. I sure hope it's not. I just feel it's super important to be certain it's not epilepsy before someone just jumps to the conclusion he has schizophrenia.
Intrusive thoughts do happen with sever anxiety disorders and OCD. Up until now, that's the diagnosis we've been operating under. The thoughts get worse when he's under more stress or when depression mixes with his stress. He never mentioned the intrusive thoughts. It wasn't until 3 years ago he mentioned that he heard his thoughts in his head his whole life. They are his thoughts, not someone talking to him. He didn't tell me until a few months ago about the intrusive thoughts and what specific intrusive thoughts were tormenting him.
The PCP was already treating his anxiety with Klonopin for the past 3 years. Son refused antidepressants due to a bad side effects when he was younger. When he talked to me two months ago, I called the doctor at night and the doctor called a prescription in for Zoloft. We've been slowly increasing the dosage to avoid bad side effects. He's at 75mg per day. 200mg is optimum for treating OCD, and we're aiming for as high as he can tolerate. So far, so good. He is making progress everyday. There is an antipsychotic waiting for him at the pharmacy if he ever decides to try it. So far, he hasn't.
I'm not trying to avoid getting him help. I've been trying to find out what's wrong with him for years and years. I'm more afraid of his doctor, who is my doctor, thinking I'm a hypochondriac and not taking my concerns about my son seriously. He's a really good doctor. I'm dealing with my own insecurities about feeling like I have him under a microscope and I'm seeing things that aren't there. I came here for validation that my concerns are justified. Everyone has done a good job of helping me with that. I will definitely call the doctor and go see him to share all of this.