Understanding Epilepsy

Epilepsy is not the moment when your brain takes control of your body, then violently tosses it back and forth. It is not the tongue biting, the absent stare, the losing bladder control, the fainting, the drooling, or the involuntary yell when the air is expelled from your lungs. THAT is the seizure. Most people with Epilepsy spend 99% of their lives in the interictal stage. (Epilepsy.com)


Interictal: the time between seizures


Having a seizure sucks. It just does. But, I am not really aware until I have had one that I actually had a seizure. So, I only deal with the aura and the postictal stage of the actual seizures. It is the interictal time, in my opinion, that is THE most difficult. Unless someone has actually spent the time to read the information or asked the person, the general population thinks that Epilepsy is the seizure. The interictal time is different for each person. This is what keeps me up at night and alters my daily life. Not the seizure.

• Fear of having a seizure-especially when I am in public


• Figuring out how I am going to go buy groceries


• The inability to keep up physically-fatigue


• The need for more sleep than most people


• Trying to hide my limitations so that no one knows I am struggling


• Extreme anxiety


• Auras-mostly when I am stressed or tired. (Numbness/tingling in my lips, visual disturbances in new environments-seeing things move that really aren't there, feeling the bed move when no one is moving, the feeling of "electrical surges "zaps" when I close my eyes, nausea, rapid heart rate, sweating, changes in my speech, the inability to think of the right word to say, short-term memory loss.)


• Taking medication every day for an unknown amount of time


• Medication that interrupts the normal sleep cycle-resulting in fatigue, anxiety, and agitation


• Managing the stress, anxiety, medication, and sleep


• Managing my own health care and treatment plan-finding the right physician is VERY difficult


• Bring awareness to those who do not understand

These are just the things I deal with on a daily basis. This does not include my actual life; work, home, child. I am thankful that I do not have to worry about having a soft floor in my house in case I fall. Or, knowing that I will never be able to drive again. Some people have brain surgery to CONTROL, not get rid of entirely, their seizures.

And, without warning-some people never wake up the next morning because they died in their sleep from SUDEP. Yes. That is a real issue. It happens. And, that is what those of us who battle this disorder are faced with every single day.

Epilepsy does not go away. The medication does not control this interictal period. My brain still has abnormal activity. The medication just controls the seizures. Knowing that family and friends really do understand this disorder means the world to me and the rest of us who deal with this. We look fine on the outside. But, we are dealing with a GIANT monster on the inside. I can still do everything I did before and be just as, or more, successful professionally. But, I do have an added stress. My employer is the best ever and I mentally give them a giant hug everyday.

I hope that understanding what Epilepsy really is, and what it is not, allows people to take a step back and think for a moment. It really is appreciated by all of us who have Epilepsy and those who advocate.