One Woman’s Journey Through the Ups and Downs of Her Epilepsy

Veronica C. shares her epilepsy journey of revelation and awareness.

Epilepsy, one of the more common neurological diseases, in which abnormal brain activity results in seizures, may be even more common than you realize.¹ In fact, approximately 1 in 26 people may develop epilepsy at some point during their lives, but it can manifest in many different ways.¹

Veronica C.^*, an advocate for people living with epilepsy, is no stranger to the disease; she had her first seizure when she was just 13. Decades later, she was shocked to discover she still had more to learn when she first heard about seizure clusters while attending a symposium at the American Epilepsy Society (AES) conference. “It was almost like the person speaking was talking about me,” she says. Seizure clusters are periods of increased seizure activity (two or more seizures in a 24-hour period) that are different than your usual seizure pattern.^2,3

Veronica’s journey

“So much of my life is based around my health,” Veronica notes. “I was on five different medications between the ages of 14 and 18, but my seizures weren’t well-controlled. I didn’t want my friends to know. I kept my diagnosis to myself.” Because there is a stigma associated with epilepsy, some people will try to refrain from sharing their condition or even try to deny having it.¹

She switched medications whenever they stopped reducing the number of her seizures, and even considered brain surgery. “There were times when my seizures were so strong, I didn’t think I’d live long enough to graduate,” she says. Her doctor suggested she enroll in a clinical trial, where she found a medication that helped — and received her inspiration to work as an advocate.

Then the stress of a new job began to trigger her epilepsy, specifically partial-onset seizures wherein the abnormal electrical activity begins in only one region of the brain.¹ At that point, she began taking BRIVIACT^® (brivaracetam) CV, which was effective in reducing the frequency of her partial-onset seizures.

Seizure clusters

Until that fateful day at the AES conference, Veronica wasn’t aware of seizure clusters. “Somehow my mom can always tell when I’m having absence seizures,” she notes. An absence seizure is a type of generalized seizure that involves brief staring spells.¹ “Once when we were talking, she said, ‘Do you realize you just had seven seizures in the hour we’ve spoken?’”

Seizure clusters vary from one person to the next and can be extremely disruptive.^3-5 People experiencing them often don’t know when they might happen, or when they will stop,^4-6 and they can lead to injury or even hospitalization.^7,8 They also don’t know how many seizures they will have — they just know there will be multiple.^4,5

At the symposium, Veronica suspected she’d been experiencing seizure clusters. “It just hit me — especially when they mentioned absence seizures back-to-back,” she says, thinking of her conversation with her mom. After the symposium, Veronica took the initiative to speak to her epileptologist (a neurologist who specializes in epilepsy) about the symptoms that made her suspicious she was experiencing seizure clusters — something all patients should do if they suspect they are having seizure clusters. Veronica is still working with her doctor to address the frequency of her seizures. If diagnosed with seizure clusters, treatment may include a rescue medication as needed. Treating seizure clusters may include being prescribed a rescue medication in addition to daily medications.^9-11 Although Veronica takes BRIVIACT for partial-onset seizures, BRIVIACT is not an approved treatment for seizure clusters.

Advice

Managing her partial-onset seizures with BRIVIACT and learning about seizure clusters has encouraged Veronica to keep working as an advocate for everyone living with epilepsy. Her advice for others is based on her own experience.

“Start doing research on your own,” she says. “And seizure tracking does make a difference,” she adds, noting that she uses a combination of a smartphone app and handwritten notes to do so.

In college, Veronica decided against going to graduate school because of the severity of her seizures, but her journey of living with epilepsy has inspired her. “If you told me years ago that epilepsy would be the reason why I would go back and get my master’s degree, I wouldn’t have believed you,” she says. “If you told me that seizures would inspire me to go to work as a fundraiser and advocate, I would have said, ‛No way!’ But you never know where the things that happen to you in this life will lead you. That’s why I’m here today, sharing my story. I wouldn’t say I’m fearless, but it’s changed my level of fear. Today I feel strong enough to deal with whatever happens.”

BRIVIACT^® (brivaracetam) CV is a prescription medicine that can be used to treat partial-onset seizures in people 4 years of age and older. Please see the following BRIVIACT Important Safety Information.

To learn more about partial-onset seizures, visit BRIVIACT.com. To learn more about seizure clusters and how a rescue medication may be able to help, visit nasalspraytreatment.com.

^*Veronica C. is an epilepsy advocate for UCB.

IMPORTANT SAFETY INFORMATION

What is BRIVIACT?

BRIVIACT^® (brivaracetam) CV is a prescription medicine used to treat partial-onset seizures in people 4 years of age and older.

– It is not known if BRIVIACT injection is safe for use in children.

– Children 4 years of age and older should only take BRIVIACT by mouth.

– BRIVIACT injection is only for use in people 16 years of age and older and may be given in the vein (intravenously) when BRIVIACT is not able to be taken by mouth.

It is not known if BRIVIACT is safe and effective in children younger than 4 years of age.

What is the most important information I should know about BRIVIACT?

BRIVIACT is a federally controlled substance (CV) because it can be abused or lead to dependence. Keep BRIVIACT in a safe place to prevent misuse and abuse. Selling or giving away BRIVIACT may harm others and is against the law.

Like other antiepileptic drugs, BRIVIACT may cause suicidal thoughts or actions in a very small number of people, about 1 in 500 people taking it.

Call a healthcare provider right away if you have any of these symptoms, especially if they are new, worse, or worry you:

– thoughts about suicide or dying

– attempts to commit suicide

– new or worse depression

– new or worse anxiety

– feeling agitated or restless

– panic attacks

– trouble sleeping (insomnia)

– new or worse irritability

– acting aggressive, feeling angry, or being violent

– acting on dangerous impulses

– an extreme increase in activity and talking (mania)

– other unusual changes in behavior or mood

Do not stop BRIVIACT without first talking to a healthcare provider.

– Stopping BRIVIACT suddenly can cause serious problems.

– Stopping a seizure medicine suddenly can cause seizures that will not stop (status epilepticus).

Who should not take BRIVIACT?

Do not take BRIVIACT if you are allergic to brivaracetam or any of the inactive ingredients in BRIVIACT.

What should I tell my healthcare provider before starting BRIVIACT?

Before taking BRIVIACT, tell your healthcare provider about all of your medical conditions, including if you:

– have or have had depression, mood problems, or suicidal thoughts or behavior

– have liver problems

– have abused or been dependent on prescription medicines, street drugs, or alcohol

– have any other medical problems

– are pregnant or plan to become pregnant. It is not known if BRIVIACT will harm your unborn baby.

– are breastfeeding or plan to breastfeed. It is not known if BRIVIACT passes into your breast milk.

What should I avoid while taking BRIVIACT?

Do not drive or operate heavy machinery until you know how BRIVIACT affects you. BRIVIACT may cause drowsiness, tiredness, dizziness, and problems with your balance and coordination.

What are the possible side effects of BRIVIACT?

BRIVIACT may cause serious side effects, including:

– See “What is the most important information I should know about BRIVIACT?”

– Nervous system problems. Drowsiness, tiredness, and dizziness are common with BRIVIACT, but can be severe. See “What should I avoid while taking BRIVIACT?” BRIVIACT can also cause problems with balance and coordination.

– Mental (psychiatric) symptoms. BRIVIACT can cause mood and behavior changes such as aggression, agitation, anger, anxiety, apathy, mood swings, depression, hostility, and irritability. Irritability and anxiety are common with BRIVIACT, and can be severe. People who take BRIVIACT can also get psychotic symptoms such as hallucinations (seeing or hearing things that are really not there), delusions (false or strange thoughts or beliefs), and unusual behavior.

The most common side effects of BRIVIACT include:

– sleepiness

– dizziness

– feeling tired

– nausea and vomiting

Side effects of BRIVIACT in children 4 to less than 16 years of age are similar to those seen in adults.

These are not all the possible side effects of BRIVIACT. For more information, ask your healthcare provider or pharmacist. Tell your healthcare provider about any side effect that bothers you or that does not go away. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to UCB, Inc. at ucbCARES^® (1-844-599-CARE [2273]).

Please see additional patient information in the Medication Guide on www.BRIVIACT.com or call 1-844-599-2273. This information does not take the place of talking with your healthcare provider about your condition or your treatment. For more information, go to www.BRIVIACT.com or call 1-844-599-2273.

References

Epilepsy Foundation. Accessed September 1, 2020. https://www.epilepsy.com/
Fisher RS, Bartfeld E, and Cramer JA. Use of an online epilepsy diary to characterize repetitive seizures. Epilepsy Behav. 2015;47:66-71.
Penovich PE, Buelow J, Steinberg K, Sirven J, and Wheless J. Burden of seizure clusters on patients with epilepsy and caregivers. Neurologist. 2017;22(6):207-214.
Cereghino JJ. Identification and treatment of acute repetitive seizures in children and adults. Curr Treat Options Neurol. 2007;9(4):249-255.
Detyniecki K, Van Ess PJ, Sequeira DJ, Wheless JW, Meng TC, and Pullman WE. Safety and efficacy of midazolam nasal spray in the outpatient treatment of patients with seizure clusters—a randomized, double-blind, placebo-controlled trial. Epilepsia. 2019;60(9):1797-1808.
Jafarpour S, Hirsch LJ, Gaínza-Lein M, Kellinghaus C, Detyniecki K. Seizure cluster: Definition, prevalence, consequences, and management. Seizure. 2019;68:9-15.
Buck D, Baker GA, Jacoby A, Smith DF, and Chadwick DW. Patients’ experiences of injury as a result of epilepsy. Epilepsia. 1997;38(4):439-444.
Haut SR, Shinnar S, and Moshé S. Seizure clustering: risks and outcomes. Epilepsia. 2005;46(1):146-149.
McKee HR and Abou-Khalil B. Outpatient pharmacotherapy and modes of administration for acute repetitive and prolonged seizures. CNS Drugs. 2015;29(1):55-70.
Agarwal SK and Cloyd JC. Development of benzodiazepines for out-of-hospital management of seizure emergencies. Neurol Clin Pract. 2015;5(1):80-85.
Poukas VS, Pollard JR, and Anderson CT. Rescue therapies for seizures. Curr Neurol Neurosci Rep. 2011;11(4):418-422.