Epilepsy disrupts nerve cell activity in the brain and causes seizures. Epilepsy has various causes, including an abnormality in brain structure or wiring, an imbalance in nerve-signaling chemicals, or a change in brain cell features. While these seizure disorders are not yet completely understood, there are both genetic and non-genetic types of epilepsy. Genetics may be a contributing factor in even non-genetic epilepsy. Learn about epilepsy causes, symptoms, risk factors, and treatment options.
people in the U.S. live with epilepsy
of patients diagnosed can control their seizures with medication and/or surgical intervention
What Causes Epilepsy?
For those with epilepsy, seizures occur as the result of a disruption in the electrical communication in the brain, whether due to an illness or infection, brain damage, brain tumor, or abnormal brain development. These seizures can look like changes in sensation, emotions, or behavior as well as convulsions, muscle spasms, and loss of consciousness.
There are different types of seizure disorders associated with epilepsy, including mesial temporal lobe epilepsy, post-stroke or post-concussive epilepsy, and genetic or pediatric inherited epilepsy. Individual seizures are often classified based on where they begin. A focal, or partial, seizure begins with an electrical discharge in a localized area or one side of the brain, while a generalized seizure involves both sides.
Epilepsy Risk Factors
For the six out of 10 people with non-genetic epilepsy, the cause of the disorder is unknown, though experts believe genetics can still play a role. In addition, people who have brain damage as the result of a stroke or traumatic brain injury may also have a higher risk for epilepsy. Research is currently exploring how certain infections, developmental and metabolic disorders, dementia, and other conditions may serve as a root cause of epilepsy.
Currently, about 3.4 million people in the U.S. live with epilepsy. One in 26 people in the U.S. will develop epilepsy while about 9% will experience a seizure. Epilepsy affects all ages and races, but the incidence is higher in children and older adults.
Epilepsy Signs and Symptoms
The primary symptom of epilepsy is recurrent seizures without a clear trigger. Epilepsy can also cause a person to experience strange sensations, emotions or mood shifts, and changes in motor function and behavior in addition to convulsions, muscle spasms, stiffness, changes in heart rate and breathing, and loss of consciousness. The symptoms and outcomes of each seizure or seizure cluster can range from severe and life-threatening to more benign in nature.
A person receives a diagnosis of epilepsy after having two or more unprovoked seizures—that is, not caused by a known medical condition—at least 24 hours apart. Brain scans such as magnetic resonance imaging (MRI) or computed tomography (CT) or tests that measure electrical activity in the brain such as electroencephalography (EEG) can assist with diagnosis.
While most seizures do not cause long-term damage to the brain, repetitive uncontrolled seizures may cause brain damage and contribute to behavioral or emotional changes. Patients with epilepsy may also be limited in their independence or the types of activities they can engage in, such as being unable to drive, because of the risk of seizures.
Appropriate treatment and prognosis depend on the cause of epilepsy and type of seizure. For about 70% of patients diagnosed with epilepsy, seizures can be controlled with medication and/or surgical intervention. However, for others, their seizures may not be responsive to medication. Specialized diets can also help control seizures, especially in cases when medication is ineffective or causes significant side effects. Neuromodulation devices, which stimulate nerves in the brain, can also be effective in preventing or reducing seizures by disrupting the abnormal brain activity leading up to a seizure.
While the frequency and severity of seizures can be managed through medication and surgical techniques, there is currently no cure for some forms of epilepsy. Additional research is needed to more effectively determine a seizure’s origin point and to predict and prevent seizures from occurring.
Orlena was driving with her young daughter in the car when she suffered a stroke because of a rare brain vessel disorder called Moyamoya. After two brain surgeries and six months unable to care for her daughter, Orlena began to reclaim her independence and became a Moyamoya advocate.
At 15 years old, Zoe has been navigating her Tourette syndrome diagnosis for eight years. “I had to figure out at a young age how my emotions affect my tics, from good to awful ways. It has been frustrating to figure out on my own and learn to deal with. This was the first moment in my life where my parents couldn’t fix something for me.”
Sasha was diagnosed with epilepsy after sustaining a soccer-related brain injury in high school. Since then, Sasha has worked to find both a treatment that controlled her seizures and a career that fulfilled her desire to care for others. “Life isn’t meant to be lived taking multiple medications and having seizures you can’t control.”
Before frontotemporal lobe dementia, sometimes called Pick’s disease, Ken Keene Sr. was a respected community member and a handyman who could fix anything. For his oldest son and namesake Ken Keene Jr., there was nothing his father couldn’t do: “To my family, he was just that super dad. Then all of a sudden he’s reaching out for help.”
It started with a twinge. After a simple surgery and some physical therapy, Morgan wasn’t getting better. It took two more surgeries before she was diagnosed with Complex Regional Pain Syndrome (CRPS) type II.
In 2018, Kelly was diagnosed with glioblastoma after an MRI confirmed that a golf-ball-sized tumor above her right ear was affecting the left side of her body. After surgery to remove the tumor, Kelly was able to get through her darkest days with a healthy dose of humor. Now she is an advocate for other patients living with strokes and brain tumors.
When her father was diagnosed with vascular dementia in 2005, Nancy quickly shifted into the role of his caregiver. Nancy and her sisters drew from their individual strengths to provide their father with medical assistance and emotional support until his passing in 2012. At that time, he was diagnosed again with Lewy body dementia. “No matter what your financial situation, there’s probably going to be help out there… Just don’t do it alone, because burning yourself out is not going to help anybody.”
Maureen worked as a high school English teacher until she started experiencing a confusing array of symptoms that affected her ability to work, along with her relationships with family and friends. After visiting numerous specialists for years, Maureen received a delayed diagnosis of Lewy body dementia. Now Maureen wants to raise awareness about what life is like with living with this disease. “I felt that I just wanted to offer something to this community that I hadn’t been able to find really.”
For the first 32 years of his life, Joey experienced seizures from epilepsy. For several years, Joey worked hard in his career as a pipe welder and in construction until his seizures started happening more frequently and intensely. Brain surgery became Joey’s only viable option for treatment. Doctors were unsure if Joey would be able to survive after finding more brain damage than expected, but he surprised everyone by thriving during his post-surgery recovery.
At age 40, Ben was perfectly healthy and active until he started noticing the early symptoms of a neurological condition that weakened his physical movements. After a 2-year search for his diagnosis of X-linked adrenoleukodystrophy, he began his journey as an advocate for others living with rare diseases. Last year, Ben joined the board of the American Brain Foundation to further his impact.
In 2002, while her young daughter battled a fatal diagnosis of pons glioma, Michele experienced a life-threatening brain hemorrhage when a brain malformation she likely had since birth ruptured. She experienced drastic changes in the way her brain functioned, especially in regard to memory and spatial awareness. Today, Michele is still learning to adjust. “When someone’s brain is not functioning correctly it impacts everything in their life. It impacts how they think, how they feel about themselves, it’s a very hopeless space to be in as a person.”
Matt is a husband, father, and professional photographer. Over the past 11 years, he has had surgeries and radiation to remove five benign brain tumors. Following the third surgery, he began to experience more struggles in his daily life. “I think the biggest loss is my relationship to my family. They saw me as the dad and strong. Now they can’t count on me as much. It’s important to support people with brain disease ‘cause it can happen to anybody.’”
When she was in her early 30’s, Mary Jo’s relationship with her parents was forever altered by brain disease. Her father suffered a subdural hematoma, was diagnosed with diabetic neuropathy, and experienced a stroke while her mother was diagnosed with Alzheimer’s and dementia. “They’re a responsibility that I have to take care of as they have taken care of me.”
Tom suffers from dystonia, a painful neurological movement disorder with no known cure. When he first started experiencing strange pains and cramps in his neck muscles, he saw chiropractors and physical therapists—but when this didn’t help, Tom started down a long and painful road to an eventual diagnosis. Before his diagnosis at 30 years old, Tom was an athlete and an entrepreneur, but as his symptoms worsened, even performing everyday tasks became a challenge. Before long, the pain became debilitating. Over time, Tom learned to accept his new limitations and focus on his physical and mental health.