Anyone dealing with epilepsy understands the challenges of getting through today can be nearly impossible to overcome. Planning for the future sometimes seems futile because the fear of the next privilege that seizures are going to steal is always looming. No sense can be made of the losses and no amount of reasoning makes a person feel better about epilepsy taking away their choices and abilities. Like it or not the sun keeps rising and setting and days go by that eventually turn into years as you plod through living with epilepsy. Whether you have only a few or many seizures per year please don’t let those events stop you from looking at your future with epilepsy.
I tried to encourage Charley by telling him that life could always be worse and he knew that statement was true but certainly did not enjoy having seizures. We lived day by day and slowly adjusted to the pieces of life Charley lost. I look back now and realize the loss of driving privileges and inability to work were not the greatest losses Charley suffered due to epilepsy. When he began to seizure in 1980 and for many years afterward the common theory about seizures was they caused no damage to the brain. Recent medical research papers still state that seizures cause no mental illness; however it is a known fact that epilepsy does cause psychosis. I am no doctor or expert on mental illness or categorizing medical conditions. I was neither of those things thirty years ago but I knew after every seizure or set of seizures Charley woke up a different person and his mentality was never the same. Something was always missing or reduced. His memory, motion and general ability to understand daily functions and responsibilities were forever dulled. I also knew his occasional bouts of psychosis were caused by seizures (not that I had the word psychosis to pin the problem on). I knew seizures were causing the psychosis because he displayed the exact same erratic behaviors months between episodes. The psychotic episodes were much like the seizures as far as my ability to predict what would happen after they began. How could those occurrences of unstable behavior not be seizure related?
I know your life with epilepsy is tough but be grateful for the research that has been done and the answers that are available today. In the 80’s and 90’s there was no internet or information concerning seizures. Most of our knowledge was gained by trial and error or came from the few books I could find locally and the brief time we had with Charley’s doctor’s when he had an appointment.
I spent nine years writing Epilepsy Unveiled and during that time a lot of information has become available on the internet. One of my main goals is to help others whose epilepsy is creating psychosis to recognize symptoms and seek help for the problem. During my research on the subject of epilepsy and psychosis two distinct things stand out: many doctors state in different ways that the psychosis that epilepsy creates is common, dangerous, and treatable and the caretakers or people who are dealing with psychosis assume the condition is rare, don’t understand the potential danger factors, and have no idea how or where to seek help. You would think information about a medical condition that doctors regard as common would not be so elusive. Unless you are a doctor looking for medical terms that describe the condition you really aren’t going to get many answers out of the information found on the internet.
The word psychotic carries with it negative connotations that most people are afraid of or do not want to discuss. Not me! I want to talk about psychosis because Charley and I blindly lived with some of the worse situations that epilepsy and psychosis can create. I want to prevent anyone else from living in the dark world that psychosis can create due to lack of information about the condition. If seizures are making you psychotic at times there is no reason to be ashamed or misinformed about that possibility. Perhaps your seizures have never created psychosis. Did you know that recent medical research asserts that 25% to 50% of people who have seizures (especially tonic-clonic, or grand mal) for more than 12 to 15 years will suffer some degree of psychosis?
Thus my question: What is your future with epilepsy?
As I write in Epilepsy Unveiled life with seizures is unpredictable and causes many unknowns. If you have seizures and continue to have them for a period of years there is a possibility that psychosis may become a part of your life which is not a big deal if you know the symptoms and can identify the problem. There are medications available that stop psychosis. No medication or help is forthcoming if the people dealing with psychosis have no clue what the problem is and cannot describe to their doctors the erratic behaviors that are a sign of psychosis.
Once again, my question: What is your future with epilepsy?
I sincerely hope if you are suffering with seizures you never have a psychotic episode. And I hope as a caretaker you never witness a psychotic episode. There are no guarantees with epilepsy. If your seizure situation becomes extreme and psychosis emerges the ability to immediately recognize the behavior for what it is and go to your doctor with confidence and get the help you need would be much better than being uninformed. Charley and I both described his behaviors to doctors but we did not have a clue they could be medically diagnosed as postictal, interictal or peri-ictal psychosis. Who would?
Today you might not have ever had a psychotic episode due to seizures. Tomorrow you might have the first. Be prepared. If you read Epilepsy Unveiled and psychosis is or becomes a part of your seizure situation you will be able to recognize the symptoms and go to your doctor with the confidence you need to accurately describe your situation and get help. I describe every aspect of Charley’s psychosis that I witnessed including extreme behavior patterns, chronic psychotic behaviors and how to recognize clusters of seizures that often create psychosis. I also parallel psychotic behaviors with medical terms so you can understand what those terms mean in regular people (not doctor) language.
No one can know for certain what their future with epilepsy will be. I have researched medical information and looked back on twenty-six years of living with epilepsy to help others learn to look forward and be prepared. Don’t let your future with epilepsy take you by surprise. It does not take long for undiagnosed psychosis to swallow a person whole. It is best to be aware of the unknowns that seizures can create so you are always in control of your future with epilepsy.
