This is a question that comes up time and time again when someone learns I have epilepsy. In fact, it would be safe to assume most people with epilepsy have heard this question in some form at one time or another. Frankly, sometimes this question can be annoying. It’s no fault of the asker of course. The asker is just trying to understand and most of us appreciate that, but it’s a very difficult question to answer. This answer may vary from person to person with this neurological disorder. Epilepsy comes in many forms so what it feels like will most likely vary as well. So instead of trying to answer this question on behalf of ALL epileptics, I’ve instead decided to answer this question with my own experience of this disorder. I hope it helps to answer this question at least a little a bit.
I have found that in reality, this question is, in fact, two different questions. The first question is just what it sounds like. What does it, in fact, feel like to have epilepsy? The other of course is: What does it feel like to have a seizure? I consider these two different questions and each could be a post on its own, but here I will try and make the answer brief. In the future, I may write more detailed posts on each question.
Question 1: What does it feel like to have epilepsy?
First, let me start out by emphasizing that epilepsy varies in severity. Some people have several seizures a day and this can cause disabilities and make it very difficult to live a normal life. What epilepsy feels like for someone on this end of the spectrum will be very different from someone like me. I, on the other hand, have found control with my seizures and have found a way to live a somewhat normal life. Before I found control my seizures were spaced out with months in between so mine was much milder than what many others may experience. So my answer to this question will be extremely different from what others might tell you or describe to you.
Before I had found control with my seizures what if felt like was different. If we think of life as race or marathon then having epilepsy was a bit like having fifty-pound weights to your ankles and arms and watching all your peers easily sore ahead of you with no hope of ever catching up. No matter how hard you try to run and catch up you are always hopelessly behind.
Having a seizure can require you to drop what you’re doing for the day or sometimes even a couple of days to recover. When you’re not seizing you are dealing with the horrible side effects from the medication. There were times I couldn’t walk straight. I looked like a drunk girl trying to walk to her next class in high school. The room was always spinning. My hands were always shaking. On top of that, the medicine made it hard for me to learn so for years I believed I was stupid. After all, how could someone try so hard and still only get D’s and F’s? I must have been dumb right?
Epilepsy was a thief that robbed me of my self-esteem, confidence, will power, and desire to socialize. I began to isolate myself because I didn’t feel like anyone really understood. So I felt alone so I spent time alone. Fortunately, I have a very stubborn friend who was talented at taking me places when I didn’t want to go. If it hadn’t been for her I never would have left my room. I truly hope everyone with this neurological disorder finds a friend just like her.
Even now with control it still has an impact. The one thing that never goes away whether you are controlled or not is the fear. The fear you live with every day of your life. Every time I don’t sleep well there is the fear lingering that today I might have a seizure because lack of sleep has always been a trigger. Every time I had my period I wonder will I have a seizure? Although I have a driver’s license I still hate driving. Why? Because the moment I get in that car I wonder what would happen if I should have a seizure behind the wheel. This is why my husband does most of the driving. He knows I live with that fear. It’s the fear I have as I now am in my fifth pregnancy hoping I don’t seize during my pregnancy. Hoping that my medication doesn’t cause a deformity such as cleft lip. Wondering if one day my kidneys will fail because of the medicine I have to take to lead a normal life. Having epilepsy means to live in fear every day. It means forever wondering if you will seize today and if that seizure might be the one that kills you.
Question 2: What is it like to have a seizure?
What many people don’t realize is what a broad question this really is. There are many types of seizures and the answer will change depending on what kind of seizure it is. To learn more about the different kinds of seizures check out my beginner’s guide. For the sake of trying to keep this short, I will share with you what it was like for me to have a tonic-clonic seizure or a granmal seizure. These are what many people think of when they hear the word seizure.
A seizure begins before the actual falling and shaking bit. Many of us have what we call auras and these are warnings that you are about to have a seizure. For me even though I do receive these warnings I often am too far gone to say something to someone. In the Cleveland Clinic when I was having a week long EEG we discovered I act normal and can respond normally at the beginning of my seizures. Which explained why my parents had never seen the beginning of my seizures.
So for me, I begin to notice my eyes jumping or crossing. So, for example, I could be watching a movie when what I’m seeming jumps. This will happen over and over again. At that moment I’m mostly annoyed I can’t get my eyes to stop doing that. If I am gearing up for a tonic-clonic is just doesn’t occur to me to say something. I am already too far into that process for my brain to properly process that information.
As for the actual seizure part, I can’t tell you much. For a tonic-clonic, I completely black out. I don’t know what it feels like to go through the actual seizure as I am unconscious at this point and frankly I am happy I can’t remember the actual seizure. I really wouldn’t want to. What I do remember is the horrible aftermath that comes after.
I usually wake up on the floor. I am usually very confused and if in a place where people are around it’s almost guaranteed people I don’t know are staring at me. I don’t know why I am on the floor or how I got there. I don’t know who these people are staring at me. As if this wasn’t enough to process it’s like the flood gates to all my emotions magically unleash. Like in the movie Two Towers when the Ents unleash the river. All this emotion just hits me. I am angry, sad, happy, everything all at once. I always start sobbing and I can’t control this. Meanwhile, if someone decided to call the paramedics they are trying to ask me a dozen questions at the same time. If I wasn’t so emotional and confused I probably would tell them to go away only not so nice.
I then pass out. A tonic-clonic is a very exhausting thing. It’s like running a few marathons back to back without any rest. There is just no hope of staying awake. If it’s a one and done situation and the person doesn’t have more than one they will most likely want to go home. The ER has never really helped. Usually, they take med levels, you wait hours, and then are sent home and told to call your doctor. In my case, such a trip risks more seizures as the well-intentioned ER doesn’t allow me to get the rest I desperately need. It can take me anywhere from a day to a few days to fully physically recover. Although it can take much longer to recover mentally. Having a seizure in public or in front of friends is embarrassing and may tempt many like myself to stop going out for risk of another.
I hope this helps you understand even just a little what it’s like to live with this disorder called Epilepsy. If you yourself would like to share your perspective on what having epilepsy is like or having a seizure is like message me on Facebook and we will work something out! If you are a parent or loved one living with someone with epilepsy and want to share your perspective I would love to work something out with you as well! If you would just like to support the cause and help spread awareness you can share this post or check out the epilepsy awareness wear in the swag shop up top!