Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

I'm not doing good.

  Hello,   

     My name is John Stephens. When I was in the Marine Corps. I was deployed to Iraq in 2004, where a mortar landed behind me causing a TBI (Truamatic Brain Injury). Not until 2009 did I start receiving treatment from all the affects of war. About 2 yrs ago I began having auras that everyone at first thought were panic attacks due to my PTSD. The seizures which were complex-partials at first, then turned into violent grand-mals with multiple trips to the ER via ambulance, biting my tongue, chewing, not coherent. I don't remember anything after that feeling that a seizure is coming on. My wife who is my caregiver and is amazing, records the episodes on her phone for the DR's to see. I can't watch them or even hear about my seizures in fear that it will bring another one on. I also deal with constant nausea. I constantly live in fear that I will wake up in the ER again. In fact in writing this I feel uneasy opening up about all this. However This is what I feel. An aura that begins with extreme fear, that I will die or that the whole world is ending. Everything that is familiar becomes unfamiliar. I then get extremely tired and fall asleep. That's when all the fun begins. After that, when I finally come out of these episodes I feel as though I've been gone for a month and don't remember anything. I usually end up in the ER/hospital. I Constantly feel like a burden to everyone. My 5 children ages 15,13,9,and twin 3 yr olds. All have seen and dealt with my seizures. I can't live like this anymore and feel all alone. It has really helped reading others stories of the same experiences. I live in Southern California and haven't found much help out here except from my DR's at the VA. The last seizure I had, I felt like I was on the brink of insanity. Something only someone who has seizures can understand in my opinion. Then I shut down and don't want to talk. I need help! I need support! I can't put this all on my family anymore. This has become my new normal.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P