What is it like to live with epilepsy? – Interview with Kathryn

What is it like to live with epilepsy? – Interview with Kathryn


Hi Kathryn! Please tell us a little about yourself and your medical journey thus far.

Hi! My name is Kathryn, I’m from Medfield, MA and I’m currently a senior at Boston College studying biology and medical humanities on the pre-medical track.

A few things about myself: I absolutely LOVE dogs (I have 3!), I’m a huge Pats fan, and I’ve been a competitive soccer player for as long as I can remember. I was originally trying to play on a varsity team in college, but due to previous injuries, plans changed and I now play on a competitive club team at BC.

Although I’ve loved my time playing on the BC team, it was during a game in the national semi-finals that my medical journey started. In the last half, I suffered a severe concussion. I was elbowed in the back of the head and then fell to the ground and hit my head on the grass. Standard concussion symptoms ensued, but a week or so into the concussion, I started experiencing seizures. I was brought into numerous hospitals in Boston. I met with about 30+ neurologists, had many EEGs, and still doctors were unable to figure things out.

One night, things took a turn and I went into status epilepticus. I was rushed into the emergency room only again to be met by another doctor who didn’t know what to do. It was at this point my family and I decided to seek care in New York and get answers. After meeting with a neurologist, neurosurgeon, neuropsychiatrist, and chiropractor, I was diagnosed with epilepsy and cerebral tonsillar ectopia (a condition where the C1-6 vertebrae are inverted, cutting off blood and CSF flow to the brain and trapping toxins).

What do you experience and/or feel before a seizure occurs?

Typically, I have a few auras before a seizure. To name a few, I’ve felt: numbness, tingling (typically on the left side of my body), weird smells, sudden wave-like headaches, and an occasional rise of uneasiness. All of these don’t usually occur at the same time, but I have had combinations of them before.

What do you experience and/or feel during a seizure?

For me personally, I don’t feel anything during a seizure. When I wake up after having one, I don’t remember much of what happened. I’m typically very confused as to what happened.

How often do your seizures occur and how long do your seizures typically last?

Currently, my seizures occur 4-5x per day for about 20 minutes. Due to their duration and frequency, most of my seizures are rescued in order for me to attend my classes.

What do you experience and/or feel once the seizure is over?

Whenever someone says “you know, I feel like I’ve been hit by a bus,” I understand what they mean now, especially after a seizure. When I wake up from one, my entire body usually aches, my mind is foggy, and I generally have a decent headache. It’s hard for me to think and process information for a period of time post-seizure, but improves as the day goes on.

What’s hardest for me is as the day goes on and the more seizures I have, it gets even harder to process information. You feel more exhausted and more so as though you’ve run about three marathons in one day.

What does it feel like to receive rescue medication?

Receiving rescue medication was rough for me at first. I have the nasal Midazolam medication and to be honest, when my parents first used it, I cried. It burned! Totally did not expect it. I’ve gotten used it now, but I definitely had an adjustment period.

How do you feel after you have received a dose of rescue medication?

After it’s administered, I feel very flustered and my nose burns for a bit, but it eventually subsides. I do wake up after receiving the medication with the same feeling I have after waking up from an un-rescued seizure. There are seizures as well that have felt worse than others-  I’ve woken up and had major headaches, been very drained/exhausted, and in general in a lot of pain.

How many seizure medications do you take daily and how often?

Currently, I’m on two seizure medications that I take six times a day. I have many reminders in my phone to keep track :).

How does taking seizure medication every day affect you? Do you experience any side effects? If so, what are they?

At first, I had adverse effects to my seizure medications. I felt extremely dizzy to the point where the entire room would spin and I couldn’t focus on anything. I would have to sit down for about a half hour and just wait for it to pass. Nausea and vomiting were also frequent side effects in the beginning as well. These effects subsided as I started taking the meds more and more. Thankfully, I no longer experience any side effects.

What does it feel like to have an EEG?

To be honest, having an EEG is not my favorite thing in the world– I cannot get past the whole glued-electrodes-in-my-hair concept (still can’t). I feel like I’m strapped to the bed most of the time and that moving around is tough, especially sleeping. The electrodes and cap after a while do get a bit itchy, but feel better after they change the wrapping!

Do you feel stigma around having seizures?

Socially, I don’t feel stigmatized for having seizures. My friends, family, and boyfriend are extremely supportive and helpful throughout the entire process and I’m extremely grateful for all of them. From the beginning, they have always been accepting and encourage others do the same.

I have, though, had issues with a few professors in terms of stigma and seizures. I’ve been approached by a few recommending I drop out as they felt it would be an easier way to handle the condition. They believed the stress of it all would be too much to handle with school. Although disheartening to hear it from a teacher, I’ve learned one of the best ways to navigate this is by facilitating open conversation. Throughout these past semesters, I’ve met with each of my professors and have had honest conversations about my condition. From there, we were able to work out plans to complete the same course work but in a different way.

Stigma (from my experience) develops when one side does not understand/have ample information about the other. By initiating dialogue, it begins to close this gap, hopefully helping each side understand the other a bit more.

What are some of your hopes and dreams for the future?

In the future, I one day hope to become a doctor that works in pediatrics. Doctors meet patients at some of their most vulnerable moments- both good and bad. With kids, this is especially impactful as these moments are something that shape life moving forward. When kids go through these moments, just as I have before, I want to provide as much support and care as I can.

As a pre-med student, what are some hopes you have for the field of epilepsy research?

Some hopes I have for epilepsy research would include more detailed studies on post-traumatic epilepsy and additional causes to seizures. One thing I’ve found in my experience is that we’ve had to think very creatively until we found a solution that worked, as many neurologists haven’t seen epilepsy develop from my situation. I hope that as more research is conducted, scientists learn more about how damage caused by a TBI (or another injury) triggers or contributes to the onset of an epileptic seizure.

As an unexpected member of the epilepsy community, what has been your experience in your “new” everyday life?

Adjusting to my “new” everyday life was a difficult transition at first. It was hard managing a schedule around seizures and constantly being under supervision of others. It took time for me as well to get accustomed to being unable to do certain activities like run, play soccer, ski- all activities I thoroughly enjoy doing. I hope that when the seizures get under control I’m available to return to some of these events. As I’m getting into a routine, I’m definitely more adjusted and things are easier to manage. I’m able to find different ways to stay active, get out, and see friends.  Similar to my academics, I had to find different ways of going about normal activities.

What would you like people who haven’t experienced epilepsy to know?

Managing epilepsy is a full time job and certainly not an easy task. It takes a village and I’m beyond thankful for all the help and support of my family and friends. They have been and continue to be truly remarkable throughout this entire process.