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Living with epilepsy is a deeply personal journey that can change not only how you see yourself, but how you connect with others. For Jason Raether, a middle school nurse in Sioux Falls, SD, his diagnosis didn’t stop him from caring for others—it deepened his empathy and strengthened his commitment to educating those around him.
From Diagnosis to Clarity
Jason has spent the past 25 years practicing as a nurse, and today he serves as the school nurse for a bustling middle school of more than 750 students. However, in 2010, he found himself on the other side of patient care when he experienced his first seizure in front of his wife.
After being rushed to the hospital, and performing various testing, an EEG confirmed that Jason had epilepsy. He immediately began anti-seizure medication, determined to manage his condition and get back to caring for others.
However, as months passed, his seizures persisted. By 2011, he had increased his medication dosage, hoping for better results. Instead, he found himself feeling disoriented. “I just felt like I was in a daze,” Jason recalls. “I was functioning, but I wasn’t really present.”
That changed when he met a new neurologist who recognized that Jason’s body may have become too used to his current medication. Together, they explored other options and decided to try XCOPRI® (cenobamate tablets) CV, a prescription medication approved for the treatment of partial-onset seizures in adults 18 and older.
Jason began his transition to XCOPRI and he felt an immediate difference. “The transition was easy, and I haven’t had any seizures since starting XCOPRI,” he shares. “I also feel like I have more clarity now that I am taking a lower dosage and less medication overall.”
Like any medication, XCOPRI has risks and benefits. Do not take XCOPRI if you are allergic to it or have a genetic problem (called familial short QT syndrome) that affects the electrical system of the heart. XCOPRI can have serious side effects including serious allergic reaction which may affect organs and other parts of your body like the liver or blood cells. XCOPRI may cause problems with the electrical system of the heart (QT shortening). Antiseizure drugs, including XCOPRI, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have suicidal thoughts or actions, or new or worsening depression, anxiety, or irritability. XCOPRI may cause problems that affect your nervous system, including 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.
These are not all of XCOPRI’s side effects. We encourage you to read the Important safety information included at the end of this article.
Finding Strength Through Empathy
Jason’s work as a nurse has always been rooted in compassion. But since his diagnosis, he’s found a deeper purpose in connecting with students and families who face similar challenges.
At his middle school, Jason not only provides medical support, he also teaches staff members how to respond when a student experiences a seizure. When students come to him scared or embarrassed about their epilepsy, he offers understanding words that few others can.
“I tell them, ‘I was in your shoes about six months ago,’” he said. “My seizures look the same as yours.”
That honesty brings comfort to his students and confidence to their parents. “When I tell them that I also have epilepsy, I see the relief in their faces,” he says. “They know I understand.”
Spreading Awareness and Breaking Stigma
Jason’s passion for advocacy was ignited when he attended an epilepsy awareness walk in Florida. Seeing others have seizures in real time—surrounded by compassion instead of fear—opened his eyes to the power of community and understanding.
“That day, I knew I wanted to be more involved,” he says. “I wanted to help care for people with epilepsy and eliminate the stigma that still exists.”
For Jason, every day at school is another opportunity to lead with empathy, educate others, and remind those with epilepsy that they’re not alone. His journey from patient to advocate shows how understanding your own challenges can inspire hope—and healing—in others.
For more information on XCOPRI, 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 or life threatening 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 healthcare 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.
Liver problems: XCOPRI may cause liver problems. Your healthcare provider will do blood tests to check your liver before you start XCOPRI and while you take XCOPRI if needed. Tell your healthcare provider right away if you have any symptoms of liver problems, such as: yellowing of the skin and eyes (jaundice), nausea, vomiting, unusual darkening of the urine, or feeling tired or weak.
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.
DISCONTINUATION:
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).
DRUG INTERACTIONS:
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 healthcare provider about the best birth control method to use.
Talk to your healthcare 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 healthcare 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.
DRUG ABUSE:
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.
INDICATION:
XCOPRI is a prescription medicine used to treat partial-onset seizures in adults.
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.
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