Kailey and Alan’s Journey with Epilepsy
This blog post is sponsored by SK Life Science, Inc.
Epilepsy can present a long, challenging journey for both patients and their families. For Kailey and her father, Alan, their story is one of perseverance, resilience, and unwavering hope. After years of searching for answers and trying various treatments, they’ve now found a path forward, one that they’re eager to share to raise awareness and support within the epilepsy community.
The Beginning of Their Journey with Epilepsy
Kailey was just 14 years old when she experienced her first seizure. She woke up in the middle of the night feeling like something was terribly wrong, but she didn’t fully understand what had happened. It wasn’t until months later when her parents witnessed one of her seizures that the family realized the true nature of what was going on.
Alan recalls the night Kailey had a seizure while falling asleep in their bedroom. Hearing her cry out for help, Alan and his wife rushed her to the emergency room, where Kailey was finally diagnosed with epilepsy. For the family, the diagnosis brought both relief and fear—relief in having an answer, but fear of the challenges ahead.
The Struggle to Find the Right Epilepsy Treatment
Over the next several years, Kailey and her family embarked on a difficult journey to find a treatment that could control her seizures. During this time, they tried several medications, but none provided the relief they were hoping for. Each treatment came with side effects that made it difficult to balance seizure control while continuing to go about everyday life.
Alan and Kailey spent countless hours researching treatments, speaking with doctors, and learning from others in the epilepsy community. One of the most challenging decisions they faced was whether Kailey should undergo a responsive neurostimulation (RNS) procedure, which involved implanting a device in her brain to help control her seizures. Kailey ultimately decided to go through with the surgery, but unfortunately, while her seizures decreased in frequency, they did not stop completely.
Finding Hope with XCOPRI (cenobamate tablets) CV
After some time had passed after the surgery, Kailey’s epileptologist recommended trying a newer treatment called XCOPRI, a prescription medication indicated for the treatment of partial-onset seizures in adults aged 18 and older. With the possibility of reduced seizures, Kailey decided to give it a try. Alan remembers the sense of hope they felt as they began this new chapter in their treatment journey.
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. I encourage you to read the Important safety information included at the end of this article.
For those struggling to control their seizures, discussing XCOPRI with a neurologist or epileptologist may be a critical step. Like any medication, XCOPRI has potential side effects, so reviewing the Important Safety Information and talking with a healthcare provider about the risks and benefits is essential. To learn more about epilepsy and XCOPRI, visit XCOPRI.com. See the Important Safety Information below.
Kailey started XCOPRI, and over time, her seizures began to decrease significantly. The turning point came during a time when Kailey’s partial-onset seizures were usually at their worst—during her menstrual cycle. They braced themselves for the usual seizures, but this time, none occurred. It was a breakthrough moment for the entire family.
Moving Forward
Since starting XCOPRI, Kailey’s seizures have dramatically reduced, giving her and her family a renewed sense of hope. Due to her reduced seizures, Kailey can now participate in many activities that once seemed out of reach. From spending time with friends to traveling and returning to the sports she loves, she’s been able to rediscover the things she’s passionate about.
Kailey and Alan continue to share their story to raise awareness about epilepsy and offer hope to others who are navigating their own epilepsy journey. Their message is one of resilience—reminding others that, even on the hardest days, it’s important to hold on to the hope that things will get better.
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.
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 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.
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 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 and Medication Guide.
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