Finding a Diagnosis
Kailey: My first time having a seizure was very scary. I was 14 years old, alone in my bedroom, when I woke up in the middle of the night terrified, feeling as though someone was pushing me down. I felt like the entire night had been deleted from my brain. My first instinct was to go to Google and look up the word “seizure” only because I had heard it on a TV show and at school. My thoughts were racing: What’s going on? Did I have a seizure? I didn’t know what happened to me. What I would later find out was that I was experiencing undiagnosed nocturnal seizures that went on for months until my parents witnessed me.
Alan: When Kailey first started having these episodes, my wife and I took her to the pediatrician, and she was diagnosed with night tremors. However, as a police officer (through my training) and in my gut, I had suspected epilepsy, although I was hesitant to share that belief with our family. Then, one night in 2014, Kailey was falling asleep in our bedroom, and we witnessed her having a seizure. I remember hearing her screaming, “Dad!” and knew something was wrong, so we rushed her to the emergency room — where we received her epilepsy diagnosis.
Kailey: Hearing about my diagnosis was both a relief and a nightmare. Initially, I was hesitant to share my epilepsy diagnosis with my friends, but they were all nice and supportive. Sharing my epilepsy diagnosis with my family was also important to me because they became my support system. It brought me some peace of mind knowing that my sister, a registered nurse, was trained in epilepsy first aid and knows how to administer emergency treatments. I became more conservative about sharing my epilepsy diagnosis after I started experiencing tonic-clonic seizures, which involve both tonic (stiffening) and clonic (twitching or jerking) phases of muscle activity. Some people I had already confided in would sometimes make fun of people having seizures on TV. In the back of my mind, I thought, that’s me. Don’t equate me to a fish out of water or anything like that. Epilepsy is serious. Epilepsy can kill.
Exploring and Evaluating Treatments
Alan: Finding a treatment plan that worked for Kailey was challenging and took quite some time. During that time, we learned epilepsy and seizure treatments can come with side effects. When Kailey started having side effects from the different treatments she was trying, we became increasingly cautious when doctors would recommend a new treatment. We turned to the internet, pharmaceutical manufacturers’ websites, and the broader epilepsy community on social media for more information. When finding the right treatment plan, we quickly learned it’s important to balance the positive effects with the adverse reactions and other risks.
Kailey was trying various treatment plans for roughly two-and-a-half years until she was almost 18 years old, but the seizures were still happening. That’s when one of her neurologists recommended Kailey consider having a responsive neurostimulation (RNS) device implanted in her brain. They wanted to cut out the portion of Kailey’s brain that might be causing the seizures, so this was a major decision for us. At this point, we just wanted the seizures to stop, so Kailey decided to have the surgery.
Kailey: Even after having this major surgery that my family and I were so nervous about, I was still experiencing seizures, although the frequency slowed a bit. At that point, my epileptologist recommended a treatment called XCOPRI (cenobamate tablets) CV, a prescription treatment for treating partial-onset seizures in adults 18 and older. My doctor had not used it before, but the data he read made him confident that I would be a good candidate to try it. I decided to try XCOPRI.
Select Safety Information:
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 and see the full accompanying prescribing information and medication guide. Kailey is a real-life XCOPRI patient, but individual results may vary. Speak to a doctor to see if XCOPRI is right for you.
Discovering What Worked for Kailey
Alan: After being on XCOPRI, Kailey started to experience a reduction in seizures. Since she often had tonic-clonic seizures during her menstrual cycles, that period was an important time to see how XCOPRI would affect her. When the time came, we were on high alert as usual, but nothing happened.
From having three to four seizures a week, we started to see a significant reduction in her seizures. Since finding the right treatment, it has given us all a new sense of hope. We are so happy to see our daughter growing and thriving.
Kailey: Now that my seizures have been reduced, I am open to making new friends and returning to practice sports I’m passionate about. I can travel, go to the movies with my friends, stay home alone and watch my dogs — it’s like I was a bird inside a cage, and someone just opened it, and I can fly away. These days, I’m able to enjoy many of the activities I used to love with my friends and family.
Reflecting On Our Journey
Kailey: Living with epilepsy can be an isolating experience, and embarking on a new treatment journey can be scary — there are so many unknowns. If you’re newly diagnosed with epilepsy, make sure you do your research and listen to what others living with epilepsy have to say. If I could go back and tell myself one thing, it would be — it’s a long journey, you must be tough, and you have to fight through it because it will get better. There will be ups and downs, but you have to keep fighting. When you’re having a bad day, think about the good days. When you have a good day, remind yourself this is what you’re capable of.
Alan: There are going to be ups and downs. There will be times when you think, “This is the worst,” but you can’t always think like that, right? You have to keep fighting. There are bad days, but there are also good days. As a patient, you have to make it through the bad days and accept and build on the good ones. I’ve always told Kailey that when she’s having a bad day, she should think about the good days. Then, when she has a good day, I try to reinforce it and say, “See, this is what you’re capable of. Don’t dwell on those bad days.”
Kailey: I have to remember that a bad day is not the end of the world — I have experienced worse. Now, I try even harder to be grateful for the good days no matter what.
To learn more about epilepsy and XCOPRI, visit https://www.xcopri.com/ and see the Important Safety Information below.
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.
PM-US-XCOP-1484 9/24
Kailey and her father, Alan, reside in the San Francisco Bay Area. Kailey attended the City College of San Francisco, where she studied graphic design, and Alan is a retired police officer of 33 years in the Bay Area. Alan retired earlier than planned and stepped in as Kailey’s primary caregiver when she was diagnosed with epilepsy in 2014 to help navigate through the uncertainty of epilepsy as a family. Today, Kailey and Alan continue to advocate for the epilepsy community by sharing their story across multiple channels to raise awareness of the disease.
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