My Journey Toward Seizure Freedom
For as long as I can remember, I’ve wanted to act. But when I collapsed in a college acting class, my lifelong dream was shattered.
I had been reciting a Shakespeare monologue when the room started to close in. My professor was speaking, but I couldn’t think, couldn’t understand as the heat in the room began to feel somehow tangible. The next thing I remember was waking up, staring at the ceiling surrounded by my classmates. I heard someone say I’d been out for almost five minutes and to call an ambulance, but I had no idea where I was nor how I’d gotten there.
When I arrived at the hospital, the doctors explained that I had experienced an “absence seizure.” They also explained I needed to reach out to an epileptologist for treatment right away, as this hadn’t been my first seizure, and it probably wouldn’t be my last.
In the months leading up to that day, there were times I had felt off. At first, I thought I was just tired from my exhausting schedule of waking up early, attending classes all day and play rehearsals at night, memorizing lines, doing homework, and repeating it all over again. I chose to dismiss the nights I woke up on the floor of my dorm room or at the bottom of the stairs in my building. Deep down I knew that if I acknowledged that something was wrong, it would compromise my dream of becoming an actress and pursuing musical theater.
But that day was different. I could no longer ignore what had just happened in front of my professor and classmates.
When the epileptologists at a nearby hospital confirmed my epilepsy diagnosis a few days later, I was speechless, contrary to my usual nature. No one in my family had epilepsy, and the very word “seizure” conjured the image of violent convulsions. I, on the other hand, was experiencing types of seizures that I had never heard of — focal seizures with alerted awareness and complex partial seizures. My seizures felt like out-of-body experiences. I would stare into space, twitch, then lose complete control over my body and go limp while I drooled.
In the months after my diagnosis, my seizures became more obvious. As part of my regular monitoring, my neurologist asked me to record how many seizures I was experiencing per day. One day, I called to tell him I experienced 90 seizures before 5 p.m.. He told me to come to the hospital immediately. Upon arrival, I was put in a coma to protect my brain from more seizures. When I awoke, my neurologist told me I had experienced 156 seizures in 24 hours.
That’s when my epilepsy treatment journey started. Over the next five years, I tried dozens of medications. One medicine wouldn’t work, so we would move on to the next and the next, managing to bring my seizures down to a few dozen per day. Eventually, my parents suggested I get another opinion, but I was unsure. I was worried that I would insult my doctor. During an open conversation with him, however, he surprised me. He encouraged me to seek a second opinion, and I credit him for ultimately helping me toward a solution – albeit through another provider.
I flew from Connecticut to Maryland to meet my new doctors, and it was worth every mile. I immediately had surgery to remove 90 percent of my left hippocampus, the part of the brain that controls short-term memory. With no more short-term memory, which meant no way to memorize my lines, I was forced to quit school and say goodbye to theater. Though the surgery worked in reducing the number of seizures I was having, I continued to have seizures over the years.
As I grew older and more experienced in my diagnosis, I became more comfortable with taking an active role in my care. I quickly realized what a collaborative doctor-patient relationship looked like and how essential it was to finding a treatment plan that worked for me. When I wasn’t responding to the surgery or medications the way my doctor and I hoped, we continued to explore new options. He encouraged me to keep pushing, and in turn, I fought hard for results.
Once, he told me about a clinical trial for a potential epilepsy treatment and asked if I wanted to participate. He mentioned that in clinical trials, the drug — now known as XCOPRI® (cenobamate tablets) CV— had the potential to significantly reduce partial-onset seizure frequency. My doctor informed me that any new medicine I try has risks and benefits, and we discussed all of the potential side effects of XCOPRI®, including the most common side effects such as dizziness, sleepiness, headache, double vision, and feeling tired. I was hopeful and decided I could do this.
Please see full Prescribing Information and Important Safety Information for more information about XCOPRI®. Mary Kate’s experience is her own. Individual results may vary. Always talk to your doctor with any questions.
I flew to the trial site in Maryland weekly to receive the medication. Per treatment instructions of the study, my doctor slowly increased my dose, and that’s when I started to see a change. While the results will differ for each person, as I continued my treatment with XCOPRI®, I experienced fewer seizures. I went from having multiple seizures a day to having only a handful in a three-month period. XCOPRI® was working for me.
After 12 years, it felt strange not experiencing a seizure throughout the day, but it was a welcomed change. Today, two years after my initial dose of XCOPRI®, I only experience seizures once every six weeks.
I’m so appreciative of my doctors, family and friends for their continued support and for never giving up. Although I experience infrequent seizures now, I celebrate them as a reminder of how far I’ve come in my epilepsy journey.
Epilepsy changed my life in many different ways. I continue to wake up every morning and remind myself of three things that I am grateful for. I stand with the more than 3 million other Americans who also gain their strength from epilepsy. This condition isn’t something we have to face alone. By sharing our stories, we can give one another the strength and confidence to keep moving forward together.
For more information about XCOPRI®, please visit www.xcopri.com.
IMPORTANT SAFETY INFORMATION AND INDICATION FOR XCOPRI® (cenobamate tablets) CV
DO NOT TAKE XCOPRI IF YOU:
- Are allergic to cenobamate or any of the other ingredients in XCOPRI.
- Have a genetic problem (called Familial Short QT syndrome) that affects the electrical system of the heart.
XCOPRI CAN CAUSE SERIOUS SIDE EFFECTS, INCLUDING:
Allergic reactions: XCOPRI can cause serious skin rash or other serious allergic reactions which may affect organs and other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your healthcare provider right away and go to the nearest emergency room if you have any of the following: swelling of your face, eyes, lips, or tongue, trouble swallowing or breathing, a skin rash, hives, fever, swollen glands, or sore throat that does not go away or comes and goes, painful sores in the mouth or around your eyes, yellowing of your skin or eyes, unusual bruising or bleeding, severe fatigue or weakness, severe muscle pain, frequent infections, or infections that do not go away. Take XCOPRI exactly as your healthcare provider tells you to take it. It is very important to increase your dose of XCOPRI slowly, as instructed by your healthcare provider.
QT shortening: XCOPRI may cause problems with the electrical system of the heart (QT shortening). Call your healthcare provider if you have symptoms of QT shortening including fast heartbeat (heart palpitations) that last a long time or fainting.
Suicidal behavior and ideation: Antiepileptic drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your health care provider right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood.
Nervous system problems: XCOPRI may cause problems that affect your nervous system. Symptoms of nervous system problems include: dizziness, trouble walking or with coordination, feeling sleepy and tired, trouble concentrating, remembering, and thinking clearly, and vision problems. Do not drive, operate heavy machinery, or do other dangerous activities until you know how XCOPRI affects you.
Do not drink alcohol or take other medicines that can make you sleepy or dizzy while taking XCOPRI without first talking to your healthcare provider.
Do not stop taking XCOPRI without first talking to your healthcare provider. Stopping XCOPRI suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus).
XCOPRI may affect the way other medicines work, and other medicines may affect how XCOPRI works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
PREGNANCY AND LACTATION:
XCOPRI may cause your birth control medicine to be less effective. Talk to your health care provider about the best birth control method to use.
Talk to your health care provider if you are pregnant or plan to become pregnant. It is not known if XCOPRI will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while taking XCOPRI. You and your healthcare provider will decide if you should take XCOPRI while you are pregnant. If you become pregnant while taking XCOPRI, talk to your healthcare provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1-888-233-2334 or go to www.aedpregnancyregistry.org.
Talk to your health care provider if you are breastfeeding or plan to breastfeed. It is not known if XCOPRI passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby while taking XCOPRI.
COMMON SIDE EFFECTS:
The most common side effects in patients taking XCOPRI include dizziness, sleepiness, headache, double vision, and feeling tired.
These are not all the possible side effects of XCOPRI. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch.
XCOPRI is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep XCOPRI in a safe place to prevent misuse and abuse. Selling or giving away XCOPRI may harm others and is against the law.
XCOPRI is a prescription medicine used to treat partial-onset seizures in adults 18 years of age and older. It is not known if XCOPRI is safe and effective in children under 18 years of age.
Please see additional patient information in the Medication Guide. This information does not take the place of talking with your healthcare provider about your condition or your treatment.
Please see full Prescribing Information.