How I Found My Way Forward With Epilepsy

For a long time, I didn’t know that the moments when I felt disoriented and confused were seizures.

I would come out of an episode unsure of what had happened, what I had done, or how I had gotten somewhere. At first, I brushed the episodes off. They seemed harmless, and I was a social and active guy who wanted to keep living my life as usual.

But over time, they became more frequent. They started interfering with my work and my everyday life. Eventually, I was involved in an accident that made it clear I could no longer ignore what was happening.

Like many people who live with epilepsy, my journey to finding answers was long and often frustrating. It took years before I received the correct diagnosis, and even longer to find a treatment plan that gave me control over my seizures. 

The Long Road to Answers

Getting answers wasn’t quick or easy. For years, my symptoms were misunderstood, and my doctor visits didn’t provide much clarity. It wasn’t until I began seeing a new neurologist who conducted more in-depth testing that I was officially diagnosed with epilepsy. Finally just having a name for what I was experiencing brought some relief, but it also meant accepting that major changes were ahead.

I began learning about seizure types, potential triggers, and the different treatment options available. Finding the right treatment plan involved a lot of trial and error. Some medications reduced my seizures but came with difficult side effects. Others didn’t seem to help at all. It was frustrating, especially when I was doing everything I could and still didn’t feel in control of what was happening.

When Epilepsy Changed My Everyday Routine 

Epilepsy affected much more than the moments when I was having a seizure. It changed how I moved through the world and how much independence I felt I had. Losing the ability to drive was especially difficult. One of my favorite things to do was take my daughters out for “Daddy Daughter Date Night,” as it gave us some quality time to connect and gave their mom some time to herself. After my diagnosis, my wife didn’t feel comfortable with me driving alone or with our daughters. That was a harsh new reality for me to accept. 

Over time, I also became more aware of the role fatigue and stress played in my life. I began prioritizing rest and finding ways to better manage everyday pressures. I adjusted my sleep schedule, set clearer boundaries at work, and leaned on friends and family who understood what I was going through.

Those changes didn’t make epilepsy disappear, but they helped me feel more in control of my daily life.

Finding a Treatment That Fit My Needs

Managing epilepsy isn’t one-size-fits-all. My neurologist and I worked closely together to find a balance between reducing my seizures and managing side effects. It was a process that required time, patience, and honest conversations about what was and wasn’t working.

After I had tried several treatment options, my neurologist introduced XCOPRI^® (cenobamate tablets) CV, a once-daily oral prescription medicine approved for the treatment of partial-onset, or focal, seizures in adults.

My first thought was, “Is this just another drug we’re going to add that’s not going to work?” I was also hoping that a change to my treatment plan might eventually allow me to reduce or completely stop taking at least one of my existing medications and some of the side effects I was experiencing.

XCOPRI was added to my treatment plan gradually, and my healthcare team continued to monitor me regularly. After adding XCOPRI, I began to notice a difference. I started having a significant reduction in my episodes, and eventually, I was able to reduce one and stop taking a few of my other medications. For the first time in a long time, I felt like I was finally finding a path forward.  

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 a serious allergic reaction that may affect organs and other parts of your body, such as the liver or blood cells.

XCOPRI can cause liver problems. Tell your doctor right away if you have any symptoms of liver problems, including yellowing of the skin and eyes, nausea, vomiting, unusual darkening of the urine, or feeling tired or weak. XCOPRI may cause problems with the electrical system of the heart called 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 also 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.

My transition to XCOPRI was gradual, with regular monitoring from my healthcare team to help ensure its safety and effectiveness. It took some time to get things right, but once I started experiencing a reduction in my seizures, I could focus on living again. 

Consistency also became an important part of my treatment plan. I took my medication as prescribed, tracked my seizure activity, and stayed alert to potential triggers. Over time, I noticed a reduction in my seizures.

Beginning to Feel Like Myself Again

As my seizures became less frequent, I started to reestablish a daily routine. I reconnected with hobbies, planned trips with my family, and began thinking about my goals again instead of focusing only on my limitations. Epilepsy is still part of my life,” I’ve said, “but it doesn’t control my life anymore. 

My experience has also taught me that managing epilepsy goes beyond medication. For me, it includes communicating openly with my healthcare providers, continuing to learn about my condition, paying attention to my mental health, and staying connected with people who understand what living with epilepsy can be like.

The road to finding the right treatment plan wasn’t simple, and it didn’t happen overnight. But continuing to ask questions, speak honestly about my experiences, and work with my healthcare team helped me find a path forward.

I encourage others living with epilepsy to keep having open conversations with their healthcare providers, stay informed about available treatment options, and connect with patient communities that can offer encouragement and shared understanding.

To learn more about XCOPRI, visit www.xcopri.com and talk with your doctor.

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.

Please see full Prescribing Information and Medication Guide.