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 Missy Muffet on Thu, 2013-09-05 - 15:17

Yes, the doctor will increase doses and add medications over the phone.  He has been on Klonopin for the past 3+ years.  His dosage was increased to 1mg twice a day when he started the antidepressant medication two months ago.  He's up to 2mg per day of Klonopin and 75mg of Zoloft.  We're still increasing the Zoloft medication by 12.5mg per week.  In two weeks, he'll be up to 100mg of Zoloft.  There is a prescription for a low dose antipsychotic waiting for him at the pharmacy, but my son hasn't decided to try that yet. 

We have quite a few teaching hospitals and universities in Pittsburgh.  The universities are a good idea.  I'll wait until I talk to the PCP before going that route.  My appointment with the PCP isn't until the 18th, 2 hours prior to my son's appointment on the same day.  I'll call his nurse to see if I can talk to him on the phone about all of this.  

I wanted to add that my son will go to the PCP.  He trusts the PCP.  

Yes, the doctor will increase doses and add medications over the phone.  He has been on Klonopin for the past 3+ years.  His dosage was increased to 1mg twice a day when he started the antidepressant medication two months ago.  He's up to 2mg per day of Klonopin and 75mg of Zoloft.  We're still increasing the Zoloft medication by 12.5mg per week.  In two weeks, he'll be up to 100mg of Zoloft.  There is a prescription for a low dose antipsychotic waiting for him at the pharmacy, but my son hasn't decided to try that yet. 

We have quite a few teaching hospitals and universities in Pittsburgh.  The universities are a good idea.  I'll wait until I talk to the PCP before going that route.  My appointment with the PCP isn't until the 18th, 2 hours prior to my son's appointment on the same day.  I'll call his nurse to see if I can talk to him on the phone about all of this.  

I wanted to add that my son will go to the PCP.  He trusts the PCP.  

Re: Wondering if son has temporal lobe epilepsy

Submitted by mereloaded on Fri, 2013-09-06 - 09:14
Ok, so he won't go to specialized cared, however, please keep in mind that he is unable to make health decision for himself as his judgement is impaired. You cannot leave it up to him to get appropriate help because he can't under his current state. Please don"t wait until something bad happens to realize this. There are ways to get him help, including seeking conservatorship of his health care decisions. This is standard procedure when you care for people that cannot make such decisions for themselves. Just wanted to let you know. Best of luck

Re: Wondering if son has temporal lobe epilepsy

Submitted by Missy Muffet on Fri, 2013-09-06 - 15:09
No doctor in the world would say his judgement is impaired.  It's not easy to legally force someone to treat themselves.  Not to mention he would lose the trust of the only person he trusts.  Not a good plan. 

Sign Up for Emails

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