It is a given that the word epilepsy instantly brings to mind the thought of seizures. There is no doubt that seizures are frightening. I witnessed thousands of seizures and learned how to remain calm as I took care of Charley but after the episodes I always had the shakes, weak knees or both. Seizures can scare the devil out of anyone because there is no way to fully prepare for them. When you think a seizure is going to occur it doesn’t and when you think a seizure is not going to happen, sure enough, it does. Trying to live a productive life and adjust to the unknown is very difficult. However; seizures are a known aspect of epilepsy that research produces much information about.
There is another aspect of epilepsy that is far more frightening than seizures and that is postictal psychosis. A seizure usually stops the person with epilepsy by causing them to fall and convulse. Postictal Psychosis does the opposite by making the person with epilepsy mentally unstable, overly aggressive, hyperactive, moody and sometimes violent. That is what postictal psychosis did to Charley and he is the one case I speak of. Since postictal psychosis was not a well known aspect of epilepsy in the 80’s and 90’s, unlike seizures, I had no clue what was causing Charley’s irrational behavior. How was I to know clusters of seizures were causing him to be psychotic? I don’t care who you are if the person you love has seizures and they begin to display psychotic behavior you are not going to instantly recognize the psychosis and say, “Hey, I think your epilepsy is causing you to be psychotic. We need to find a doctor to take care of this.” How would you know? That is one of the reasons I wrote Epilepsy Unveiled. No one should have to miserably live with psychotic behavior for years and years before stumbling upon epilepsy and clusters of seizures as the cause of their misery.
When Charley had a seizure he fell down and slept. When he suffered with postictal psychosis he constantly paced and never slept. Charley’s behaviors followed an exact pattern months and years between psychotic episodes. I knew in my heart epilepsy had to be the cause of his irrational behaviors but could find no information confirming my suspicions. It is very important for everyone dealing with epilepsy to understand there are bad aspects of seizures other than convulsing; dangerous aspects, hidden aspects, violent aspects, scary aspects and life threatening aspects. Those aspects of epilepsy are created by psychosis.
In Epilepsy Unveiled I describe Charley’s patterns of behavior in order to help others with recognition of clusters of seizures which create postictal psychosis and psychotic behaviors so they can recognize what is going on in their seizure situation and get help. No one should have to live the misery we did due to lack of information.
Reading the following stories puts into perspective how important it to create awareness of epilepsy as a cause of psychosis.
Epileptic Man Found not Guilty of Murder:
http://voices.yahoo.com/epileptic-man-found-not-guilty-murder-5498855.html
Violence and Epilepsy: A Close Relation Between Violence and Postictal Psychosis:
A Case of Postictal Psychosis:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2322913/
Postictal psychosis: presymptomatic risk factors and the need for further investigation of genetics and pharmacotherapy
http://www.annals-general-psychiatry.com/content/5/1/9
If you are suffering with or witnessing psychosis along with your epilepsy please contact me through the contact tab on this website and describe your symptoms. I want to create a page on this website describing psychotic symptoms other people who are living with epilepsy experience. We have to create a better awareness and help people cope and immediately get medical help if their seizure situation spins out of control. You can’t get medical help if you do not know what you are dealing with!!!
Hello Ariana,
I apologize for the years that have passed since you posted this on my website. My family has had one tragedy after another since 2012. I am trying to get back in touch with my epilepsy friends and begin some new writing and post current information. Your story would probably sound beyond belief to many people. To me, that is an exact story of the psychotic behaviors that I have witnessed hundreds of times. I pray that you are doing well and consulting with an epilepsy specialist. God Bless, Lola
I had postictal psychosis about a year and a half ago. I had a seizure, was taken to the hospital, and released a short time later, even though both my husband and my sister didn’t think I was ready to go home — I was acting really slap-happy and weird. When my husband got me back home, I started acting very strangely. I thought that if I didn’t write some sort of nonsense phrase perfectly, our whole family would die in a horrible car wreck. My husband called an ambulance, but I wouldn’t let him ride with me because I thought we would die in a firey wreck.
The whole time I was riding in the ambulance, I kept hearing this music that was kind of like the chimes that play when a grandfather clock makes when it is about to chime the hour. I believed that I was now six degrees of separation from everyone in the world and that now the world was going to end. Then I believed that I died and was reincarnated, and that was the reason that I was in the hospital right now — because I was a baby and had just been born.
I tried to escape from the hospital more than once. I couldn’t tell dream from real. I slapped my sister in the face and tried to kick the doctor between the legs. Suddenly there were a lot of very tall security officers in the room — that part was real. I was restrained and put in a bed with an alarm so they could tell if I got out of bed. I did try to escape a few more times and they had to bring me back to my bed. I was on surveillance, and every time I went to the bathroom (the only place they didn’t have a camera), someone would come and knock on the bathroom door to ask if I were OK.
My husband came with the kids every morning to visit with me — I remember very little of this. In the afternoon, my sister would come and visit and bring games and photos and books, trying to bring me back to something familiar — I was more lucid at these times. My sister would take me walking out in the hall — I had the IV with a rolling post or whatever it’s called, so you can be hooked up to the IV but still walk around. I would say, “this all seems so real,” and she would say “this IS real.”
Eventually my escape attempts got further and further apart; I started acting more normally every day. I remember one day, near the end of my stay, my husband and the doctor came in and said, “hey, look at this. She’s wearing makeup!”
Finally (about six days later), they considered me well enough to send home, but I was very tired and only got off the couch or out of bed for maybe a couple of hours at a time. I didn’t go back to work for about two weeks after I got out of the hospital.