I'm wondering about temporal lobe seizures

Posted by mebster69 @mebster69, Jan 16, 2018

My son who is 28yo has survived some major traumas in his life including E. coli when he was three and in 2007 he was stabbed five times by a guy and then in 2009 he was shot in the chest and was in a coma for a week and a half. Well in 2015 I watched my son fragment that is the only way I can discribe it. He no longer wanted to be called by his name then he claimed to be God and he talks in very strange language sometimes. He exhibits some very strange behavior at times and extreme emotions. From what I have been able to witness h appears to be fragmented or splintered in his mind. This is very hard to watch and it breaks my heart. I am wanting to know if there is a place I can take him in washington state to get tested. Also I'm curious if any of these major traumas and illnesses could trigger these seizures later in life? Thank you

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Colleen Young, Connect Director | @colleenyoung | Jan 16, 2018

Hi @mebster69
I can only imagine who difficult it must be as a parent to witness your son's behavior. I'm tagging a few other members who have experience with temporal lobe seizures. Please meet @amckinley75 @dawn_giacabazi @micakath @bellap @doughboy47

Is your son currently seeing a neurologist?

12271997 | @12271997 | Mar 22, 2018

I have had over 3700 left temporal lobe seizures. They affect the right side of the body when you have a seizure. It handles short term memory, reasoning, and sequencing

nethshelley | @nethshelley | Mar 22, 2018

I understand what you are going through. My son, who is now 37, was diagnosed with temporal lobe epilepsy at the age of 13. While he does not exhibit the extreme Behavior, or report that he has seen God, This Is Not Unusual from what I have read. In fact there is one story of a nun who had thought she was speaking to God for many years until she was diagnosed with temporal lobe epilepsy. In her case she was extremely devastated as it shook her whole world. My son reports that although he has not seen God or spoken to him he has experienced a a form of nothingness that he can only describe as spiritual. Temporal lobe epilepsy has been linked with religious experiences for many people as it apparently triggers seizures in the area of the brain responsible for religious thought. I hope you are able to find a neurologist to work with your son. In my son's case he has never fully accepted his seizure disorder and has refused to see a neurologist. He also would not take his medicine until he was about 24, which unfortunately resulted in more brain damage then he should have had. He is still experiencing seizures as well as severe depression which apparently is related two temporal lobe epilepsy. His seizures have gotten worse over the years. I had hoped that they would become less bothersome as they do with some people. I have noticed that this form of epilepsy is very detrimental to ones personality, and in fact have read about a temporal lobe epilepsy personality syndrome. In my son's case he went from being extremely creative to less so and has become more rigid in his thinking. While he is still an excellent human being and my favorite person on Earth, it has been heartbreaking to watch him go through what he has. I hope your son will be less resistant to treatment and more accepting of his disease than mine has been. I hope you are able to find a neurologist very well-versed in temporal lobe epilepsy because it is a complicated disease and has many side effects such as depression. My heart goes out to you and to your son. If you would like to speak with me more I am open to that and would be happy to help you in anyway I can.

Gem | @gemmax | May 4, 2018

@mebster69 There are good regional diagnostic hospitals in Washington, particularly Seattle. Have you been to a familydocotor or a local neurologist who can refer you? sometimes if you haven’t it can take longer toget an appointment. And also they can do much to determine exactly who you need to see and determine if TLE is likely. For most people, temporal lobe epilepsy does not cause seizures (convulsions). it is adifferent type of syndrome. It is also usually well controlled by the right medicines. It sounds as if your son needs thorough exam by a good neurologist who can determine just what is wrong. If it is TLE, it is outside of the box to my knowledge. Is your son experiencing convulsive seizures? I would think that you can find someinfoon the Mayo Clinic website so that you can have a better idea of what it is like, I hope you find the answers that you need.