Coming to terms with a diagnosis of epilepsy can often be difficult.
Learning that you or a loved one will face unpredictable seizures can feel destabilizing. But you're not alone. Around the world, 65 million people of all ages are living with this neurological condition. Treatment is most often effective to help epileptic children and adults live full and active lives.
What happens during an epileptic seizure?
There are different seizures and epilepsy types with various signs and symptoms depending on which brain circuits and structures are involved in the electrical misfiring.
Seizures often begin with a warning (called an aura) that can feel like inexplicable fear, anxiety, or a sensation of déjà vu. Auras can consist of flashing lights in one visual field and losing the ability to hear sounds from one ear clearly.
Epileptic seizures may have subtle manifestations like sudden, motionless staring, a jerk, or shaking movements of one extremity or the entire body.
In some seizures, patients can become unresponsive/unaware of their surroundings, or they may be unable to speak or repeat words or sentences. Or, they can include a convulsion with stiffening of the arms and legs that results in a fall to the ground followed by shaking of all four extremities with loss of bladder control or tongue biting.
Having a seizure while driving or swimming is dangerous and potentially deadly.
Seizures can make people vulnerable to injuries like bone fractures, concussions, bruises, and skin lacerations. Following an episode, it is common for people to become temporarily confused, disoriented, and tired.
Seizures can occur during waking hours or when sleeping. Often patients may not know that they've had an episode, particularly when seizures occur during sleep. "This is not infrequent," says Andres M. Kanner, M.D., neurologist and chief of the epilepsy division at the University of Miami Health System.
"You may suspect you've had a seizure during sleep if you've woken up to blood on the pillowcase because you bit your tongue, you've wet the bed, you find yourself on the floor, or you find bruises that you can't explain. You may wake up feeling tired with a headache or muscle aches from convulsing. If this happens to you — especially if it happens more than once — bring it to the attention of your physician."
What causes epilepsy?
There are many causes of epilepsy, but for about half of patients, the cause is unknown. The most frequent reasons include:
- traumatic brain injury
- brain tumors
- vascular malformation
- cerebral palsy
- viral and bacterial infections of the brain
- congenital malformations of the brain
- genetic disorders
How is epilepsy diagnosed?
The hallmark of epilepsy is recurring, unprovoked seizures.
"If you experience two seizures 24 hours apart, one seizure with structural abnormalities in a brain MRI, or abnormal electrical activity in an electroencephalogram (a test that investigates the electrical activity of the brain), a diagnosis of epilepsy can be established," Dr. Kanner says.
Get emergency medical care for anyone experiencing a seizure lasting five minutes or longer.
To establish the diagnosis of epilepsy, patients discuss with their doctor their personal and family medical history, including a detailed description of their seizures. The physician will conduct a neurologic examination, a variety of blood tests, and diagnostic tests, including CT or MRI scans of the brain to allow the doctor to identify any issues. In addition, an electroencephalography study can identify abnormal electrical activity in the brain.
The doctor will rule out other causes for seizures called "symptomatic seizures." These include transient medical disturbances that can cause irregularities in the blood chemistry or possible toxic effects of drugs and medications.
If you are preparing to see a neurologist because you've experienced one or multiple seizures, try to recall any possible triggers that immediately preceded the seizure.
- under stress
- drinking alcohol or taking drugs
- expecting/experiencing your menstrual period
Seizures can be tied to any of these conditions.
"Photosensitive epilepsy is caused by light flashing and certain computer games, but this is much less common than people think," Dr. Kanner says.
Identifying certain circumstances that may lead to your seizures can help you predict or avoid them in the future.
How is epilepsy treated?
"The accurate diagnosis of the type of seizures and epilepsy is essential for the proper selection of the treatment, which typically begins with the use of anti-seizure medication," Dr. Kanner says.
Some children experiencing seizures do not need medication long-term, as they may outgrow the condition.
When epileptic seizures do not stop with medication, surgery may be an option to cure the condition. This surgery removes the affected area of the brain. It is considered only when associated with minimal risk of negatively impacting normal brain function.
"The most important way for patients to manage epilepsy is being compliant with the prescription medication and avoiding missed doses, which can trigger seizures, "says Dr. Kanner. "For parents of children on anti-epileptic medication, the goal is to ensure the child is taking it as prescribed, which becomes more challenging during adolescence when children may push back against their treatment plan or even the diagnosis itself."
"In certain types of epilepsy, some patients may be able to go off their medicine after being seizure-free for two or three years," Dr. Kanner says. "However, the decision to discontinue a medication has to be made carefully with the treating neurologist, as seizures can recur after stopping the medication if patients are not carefully selected."
Advice for parents and newly diagnosed adults
Part of managing this condition is education. Become well-versed in your particular type of epilepsy. Identify the feelings or environmental triggers that precede a seizure. Learn and teach those around you how to react appropriately to avoid injury.
"Parents, ensure that your child's school is aware of what their seizure looks like and how to respond to one," Dr. Kanner says.
The other students in the class should also be told what to expect when a child has a seizure and what they can do. This will help avoid bullying and encourage productive responses in the classroom and on the playground if your child has an episode at school.
Adults, children, and parents also need to come to terms with the loss of predictability that comes with epilepsy.
"This loss of control can result in parents becoming overprotective of their child, which can negatively impact the child psychologically," Dr. Kanner says. "It's important to encourage normal psychological growth in children with epilepsy, with the help of a pediatric neurologist."
National and local organizations and online groups can also provide resources and support for those living with epilepsy.
If you or your child are seeking a diagnosis or treatment for epilepsy, contact the team at UHealth's Department of Neurology International Comprehensive Epilepsy Center. Call 305-243-3100 or request an appointment online.
Dana Kantrowitz is a contributing writer for UMiami Health News.
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