How does it feel to have a seizure? What’s it like living with epilepsy? What do people with seizures wish their friends and family members knew about what they’re experiencing? Northeast Texas Neurology Associates is grateful these women were willing to share their stories to give others hope.

Meredith

Meredith started having seizures when she was 13. She has tonic-clonic seizures, which are also called grand mal seizures. Her original diagnosis was generalized epilepsy, but she feels her later diagnosis of juvenile myoclonic epilepsy is more accurate and precise. Here are portions of her interview.

What’s it like when you have a seizure?

Every seizure is a little different, but for most of them I haven’t been conscious. I have myoclonic jerks a lot before a seizure where my arms lurch out, but generally I black out, fall down, and wake up sore and confused. It takes a while for reality to set in and whoever is with me has to keep telling me I had a seizure. I mostly feel disoriented and the haze lasts for a while.

What happened the first time?

I was riding in my brother’s convertible in the back seat. My brother and my mom were in the front seat, and I was triggered by the sun flashing in and out of the trees. I must have been conscious for the first few seconds, but it felt like a while. I remember shivering but not being cold and thinking something was happening. When I woke up an ambulance was there.

How do other people describe your seizures?

(Long pause) Scary. I’m always around family, so it’s really emotional and difficult to watch. I’ve heard I jerk and it looks weird and freaky and scary. I feel like for the few minutes I’m actually seizing I have the cheap seats.

How did you feel emotionally when you started having seizures?

When I first had seizures, I was so upset, and I felt like everyone else was pretending things were okay because they were trying to be positive. It was so hard to deal with. I’ve always prioritized my independence, and teenagers want their personal space. I couldn’t drive or even be alone without someone being afraid I was going to seize.

The most impactful thing I remember after I was diagnosed was one time when my brother said, “You know, it just sucks.” He expressed that it was a big deal.

Did medication affect how you feel?

The first medication I took made my seizures stop, but I really hated taking it. At the time it was the mildest medication, but it still messed me up. I was angry that I might have to take it the rest of my life. I’ve flushed pills, I was just mad at the whole situation.

I felt emotionally blocked, like I processed things differently than my friends. Also, that medication severely depresses your sex drive, and I couldn’t understand why all my friends couldn’t seem to control their hormones.

When you have epilepsy, especially as a teenager, you feel like you’ve been dealt a bad hand. You want to test your boundaries, so you do things like skip your medication. Once in college I ran out of medication at the same time I ran out of money, and I skipped taking it for a few days until I got paid, pulled an all-nighter and had a seizure.

What do you want other people to know about having seizures?

It helps when people who know me educate themselves on having seizures, and let me know that they did. For family members and close loved ones, I’d say the most important thing is to take care of yourself emotionally and realize it affects you deeply. The person having the seizure obviously comes first when it’s happening, but after, you also need to allow yourself space to heal.

What about people going through it now?

After I had a seizure this year, I got on Keppra, which has been really easy. I haven’t felt emotionally different like I did on the first medication. Taking bad medication really helped my frame of mind now, since this is so much better.

I’d tell people don’t do anything without consulting your neurologist. I took myself off my medication because at the time continuing to take it was more terrifying than the thought of having a seizure. I didn’t talk to a doctor about my myoclonic jerks and they were a sign something was still going on.

There have been people like me who got off medication and maybe weren’t properly diagnosed. There have been so many advances. There are new medications to take, even ways to modify your diet.

Nykole

At 27 years old, Nykole was enrolled in grad school working on her master’s when she had her first seizure.

How do you describe what you experience?

I have what they call an aura. I get a tingling on the left side of my body in my leg or my arm, and sometimes in my cheek. I’ve never experienced it on my right side. Initially my window was about 20 or 30 seconds before a seizure, and after that I don’t remember anything. The first time they labeled me a stroke victim, and that’s what EMS responded to.

Afterward, I can’t talk. It’s almost like I’m in a different realm. It’s usually three or four hours before I become coherent. I feel really lethargic and my brain is slow to process. I become agitated, and the next day I still feel slow.

In October of 2016 I had a seizure driving. My aura has changed and I didn’t have time to pull over, so I hit a bridge. My hands gripped the steering wheel and when I seized I turned the car and slid into a bridge. All the air bags deployed, so I had injuries from that and burns from the seatbelt.

How did you process what was happening?

It was something I didn’t accept right away. My independence was taken away, and the first year was a roller coaster. I was really angry inside, and I wasn’t sure if it was the medication. For a while I was suicidal.

It was difficult to move back home with my family and have my mom and dad take me to work. I can laugh about it now, but at the time it was hard.

My parents would take me to work in my car and I wanted to tell them how to drive it. It was hard losing my independence.

The doctor increased my medication every two weeks until I reached therapeutic levels, and I had very dark thoughts.

The small things in life you take for granted are taken from you. I couldn’t lock doors when I went to my room or the bathroom. I had to notify someone when I was going to be around water. I had to be careful with curling irons and cooking, I couldn’t use lawn equipment. It was hard.

What do you tell people about your epilepsy?

I’ve never been uncomfortable with people assessing me or asking questions. I travel a lot for work, and when I do, I always let whoever is sitting next to me know I have epilepsy and give them a little bit of information about what to do on the off chance I have a seizure.

I give them permission to touch me, to get me to safety. I tell them I could vomit or urinate. I warn them what could happen and let them know not to stick anything in my mouth, just protect my head.

One of the hardest parts is people not understanding how you feel about medicine or about losing your independence. I don’t want them to think I’m a freak or that something’s wrong with me. I have a neurological condition, something they haven’t found a cure for yet.

What do you want to say to people going through it?

It’s not as scary as it sounds. All the tests aren’t scary. It’s something you eventually have to accept as part of who you are and who you will become. Patience becomes your best friend. You have to be patient with your feelings and with others. Having a support system is so important, so if you don’t have that from family and friends reach out to other epileptics or find a support group.

I’m also very open about having suicidal thoughts, because I want people to be aware that it happens. I don’t think others should judge you.

Dr. Jetter has been just amazing. My husband and I are about to have a child, and I’ve been really nervous about that whole process. The whole group at Northeast Texas Neurology Associates has been so supportive the whole time.

Sarah

On the first day of first grade, Sarah began having seizures that impacted her ability to speak. It was over a year before she started taking a medication that brought them under control. She doesn’t remember very much of that time. When she became an adolescent, an East Texas neurologist thought she may have grown out of them and weaned her off medication. Recently she started having symptoms again.

What do seizures feel like when you’re a child?

My first seizure I just remember being scared. I kept getting tongue twisted all day at school. Then when we were walking to the car it’s like I took a step and I froze. I couldn’t move. I was shaking, and my brain in the back felt funny. I felt dizzy. I couldn’t talk.

I didn’t know what was happening; we were just going to the hospital. My dad was driving so fast.

How are things different now?

What I feel is like when you have a chill, but not exactly. Then I feel like I can’t move. I’m aware of what’s going on, because I can look at the clock and note the time if there’s one in my line of view. Then it’s like when a photo loads, but there’s a lag.

It’s sort of like in the movies after a bomb goes off. I feel like when the person staggers to their feet and moves in slow motion. There’s no ringing sound like in the movies, it’s silent or sounds are distorted.

What did you feel emotionally?

I felt bad about all the worrying my family had to do. I didn’t mind taking medication though. I think if people have epilepsy and they find the right treatment, they shouldn’t take being seizure-free for granted.

Finding a Neurologist in East Texas

When asked what they wanted others to know about seizures, all three women expressed the importance of finding and working with a good neurologist. Meredith stressed seeing someone who provides not just medication but also helps manage seizures with diet and other alternative approaches.

Nykole said while other neurologists had been helpful in evaluating and treating her epilepsy, her experience with Northeast Texas Neurology Associates was the best. “Dr. Jetter does a great job of letting people know all their options,” she said. “Finding a neurologist that fits you and suits your personality is key, and she is just top notch.”

Dr. Jetter treats adolescents and adults with epilepsy. Contact Northeast Texas Neurology Associates for an appointment today.

What’s it Like to Have Seizures? 3 East Texans Share