What is the first thing you think of when you hear the word “Epilepsy?” What about “Seizure?” Normally, people think of someone on the floor convulsing. What they do not realize is that there are over 40 different types of seizures; some of these you will never know the person is having that seizure unless you know exactly what to look for. Unfortunately, that person will know and feel the after affects for sometimes and hour or days to come even with medicine.
Simply put, a seizure is a disruption in the brains electrical activity. Think of the electrical current being sent to a lightbulb, when that lightbulb flickers or goes out for a few seconds, that is a seizure. Epilepsy, is a recurring disruption of the electrical currents between various lobes.
Roughly 65 Million people globally have Epilepsy with 3.4 Million of those being Americans. There are approximately 150,000 new cases diagnosed in the United States each year. What is perhaps the most disheartening, is that 1/3 of all of those with Epilepsy, do not have a controlled case because there is not a current therapy that is effective for them. That is 21.45 Million people that live with uncontrolled seizures. Common triggers for seizures include lack of sleep, hormone changes, flashing lights, stress, particular foods, certain medications, alcohol or drug use, missed doses of medication, and low blood sugar.
Living with epilepsy is not easy. There is always a sense that you are walking on a glass bridge that has a thousand cracks, and a ravine of jagged rocks is there waiting to catch you. When my seizures returned, there was a new level of violence to them that I had not experienced. Previously, I had polite petit mal seizures. I just stared into space for a few seconds. This time, I would convulse for thirty minutes, as EMT’s and Doctor’s would struggle to get the lifesaving medicine into me. I would then wake up and be exhausted, have no concept of hours or days before having lost memory, and then the bruises from the actual seizure itself. I have never been beaten by another human being; however, when the police ask you if the domestic violence officer needs to come to you home, and your only choice is to show the very worried officer your hospital discharge papers you start to realize just how strange this new world is.
There is a fear of how people see you. You get nervous going out because unless you are with a “safe” person, what if something happens and your friend does not know how to handle the situation? Epilepsy is yes a physical disease; however, it is also a psychological warrior in that you have to plan for it.
When newly diagnosed with epilepsy, the looks of fear, anxiety, helplessness, what do I do if, did she do something to deserve this, is she demon possessed (yes in 2017 that is still asked), I will just stay over here because it is better not to get to close, and a thousand other glimmers that float across people’s face become a burden and a stress to bare. As the patient, you already struggle with understanding how your own life is changing. First, you are trying to understand what your own body just did to you. Second, you have the emotional fallout and instability. You actually go through the 5 stages of grief. Third, you then try and understand your seizures, triggers, if you have a tell or aura, you keep that log and try and find anything or everything that helps. Fourth and finally, you begin to step out into the world and realize that no matter what somehow you will overcome this.
The medication cocktail search may be easy or it may be hard, the sense of humor that will develop will be disturbing to those on the outside, I mean hey how many people get to have a lightning storm in the brain?
Epilepsy Foundation of America