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I’m a Mom With Epilepsy—These Are Some of the Biggest Misconceptions I Face Every Day

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Have you ever experienced a truly pivotal moment—something that, whether you realized it at the time or not, changed the course of your life? For Chrissy Nettekoven Spears, that moment was when she had her first seizure, over a decade ago.

Many people with epilepsy have a variable number of seizures, but for Spears, the number was high.

"At first we just thought they were these one-off events and explained them away... but then they became more and more frequent," Spears says. She eventually reached the point where she was having partial-onset (focal) seizures (a type of seizure where you remain conscious) as often as over 50 times per day.

After a winding path of doctor appointments, she was ultimately diagnosed with epilepsy. A former soccer player, Spears was coaching collegiate soccer during this time, but had to put her coaching career on pause. And this was just one of many instances when she felt that she needed to take a step back from activities she was passionate about.

When she had her son Gabe, it was often difficult to read him books or communicate with him during her seizures, but Spears felt like she had no choice but to live with these restrictions.

After multiple years of trying dozens of different treatments, she was eventually able to significantly reduce her seizures when she found the epilepsy medication that worked for her.

"I was able to stress, worry, and fear less that a seizure was going to disrupt certain things. And that was liberating."

Starting on XCOPRI® (cenobamate tablets) CV is what ultimately enabled Chrissy to significantly reduce her focal seizures.

"We had exhausted all of the options available to me at the point when I had found out about this medication, but after learning about XCOPRI®, I felt optimistic that I might eventually be able to reduce my seizures," Spears says. "I woke up one day and realized I hadn’t had any seizures that week, and it just morphed into this day-by-day realization that my seizures were becoming less and less frequent. I experienced a significant reduction in my seizures, and I was able to stress, worry, and fear less that a seizure was going to disrupt certain things—and that was liberating."

Please see full Prescribing Information and Important Safety Information for more information about XCOPRI®. Chrissy’s experience is her own. Individual results may vary. Always talk to your doctor with any questions.

Now able to focus her efforts on advocating for others in the epilepsy community—and raising Gabe—Spears is sharing three common misconceptions about epilepsy she wants people to better understand as a woman and mother living with the condition.

Keep reading for three epilepsy misconceptions that Spears wants to set straight.

Misconception 1: Epilepsy is rare

Spears noted one of the biggest epilepsy misconceptions is not realizing how common it is. "I think a lot of people—if they don't know somebody with epilepsy—think that it's a rare condition, even though it's one of the most common neurological disorders in the world," she says. According to the WHO, epilepsy is a chronic disorder characterized by recurrent seizures that impacts nearly 50 million people worldwide, including more than 3.4 million people in the U.S.

Misconception 2: People living with epilepsy aren't able to live a full life

"People think that if you have epilepsy, you aren't able to live a full and fulfilling life," Spears says, but that couldn't be further from the truth. The key, she notes, is adapting your mindset.

"I knew there were going to be some limitations in my life, and I was going to have to adapt and change what I did versus things that other moms did, and that was a little bit difficult," Spears says. "I had to reconcile that and realize it's just different. It's not worse. It didn't make me any worse of a mom. It just made me a different mom."

Misconception 3: Epilepsy looks the same for everyone.

The final point she stresses is that epilepsy looks different for everyone living with it. "People have this image in their mind that epilepsy is a person shaking on the floor, when epilepsy actually manifests in so many different ways," Spears says.

According to the Epilepsy Foundation, seizures can take on many different forms and affect different people in different ways. Understanding this nuance can help those living with the condition advocate for themselves, which Spears emphasizes the importance of.

"It's hugely important to find your voice, and use it, and advocate for yourself to your health care team, especially as you seek the possibility of zero seizures," she says. " I think it's easy to just settle when you feel like your healthcare team is not listening to you well enough. So we have to, as women, sometimes speak up even louder than the world tells us to or what we're comfortable with." Because advocating for yourself is the first step toward making the possibility of zero seizures your reality.

Photo: Chrissy Nettekoven Spears

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.

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.

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