Epilepsy FAQs - The Danny Did Foundation

Epilepsy FAQs

Aiden Wirth 14 yrs aug

Knowledge Is The Antidote For Fear

Epilepsy is a major cause of neurological disability affecting over 60 million people worldwide. Unlike stroke & Alzheimer’s disease, which primarily impact the elderly, many patients with epilepsy are children or young adults, who may be affected for decades. It is critical for patients and caregivers to themselves about the condition and treatment options. This FAQ section represents some of the common questions about epilepsy.  

The section below represents many of the questions about epilepsy. 

Epilepsy is a neurological disorder of varying types and severities that are characterized by recurrent seizures. When a person has had two or more seizures more than twenty-four hours apart which have not been provoked by specific events such as a stroke, brain injury, infection, fever, or changes in blood sugar, they may be diagnosed with epilepsy. If you have epilepsy, surges of electrical activity in your brain can cause recurring seizures. 

Not all seizures are the result of epilepsy. Seizures may relate to a brain injury or a family trait, but often the cause is completely unknown.  

Seizures are uncontrolled surges of abnormal and excessive electrical activity in your brain and can affect how you appear, awareness, movement or behaviors. Where and how the seizure presents itself can have serious effects. A seizure can be provoked or unprovoked. A provoked seizure has an acute, known cause. 

  • Sometimes it is hard to tell when a person is having a seizure. A person having a seizure may seem confused or look like they are staring at something that isn’t there. Other seizures can cause a person to fall, shake, and become unaware of what’s going on around them.
    Seizures are classified into two groups.
    • Generalized seizures affect both sides of the brain.
    • Focal seizures affect just one area of the brain. These seizures are also called partial seizures.
  • A person with epilepsy can experience more than one kind of seizure.
  • Usually, a seizure lasts from a few seconds to a few minutes. It depends on the type of seizure.
  • Epilepsy can be caused by different conditions that affect a person’s brain. Some known causes include:
    • Stroke
    • Brain tumor.
    • Brain infection from parasites (malaria, neurocysticercosis), viruses (influenza, dengue, Zika), and bacteria.
    • Traumatic brain injury or head injury.
    • Loss of oxygen to the brain (for example, during birth).
    • Some genetic disorders (such as Down syndrome).
    • Other neurologic diseases (such as Alzheimer’s disease).

For two out of three diagnosed with epilepsy people, the cause is unknown.

  • A person who has a seizure for the first time should talk to a health care provider, such as a doctor or nurse practitioner. The provider will talk to the person about what happened, and look for the cause of the seizure. Many people who have seizures take tests such as brain scans for a closer look at what is going on. These tests do not hurt.
  • There are many things a provider and person with epilepsy can do to stop or lessen seizures. The most common treatments for epilepsy are:
    • Medicine. Anti-seizure drugs are medicines that limit the spread of seizures in the brain. A health care provider will change the amount of the medicine or prescribe a new drug if needed to find the best treatment plan. Medicines work for about 2 in 3 people with epilepsy.
    • Surgery. When seizures come from a single area of the brain (focal seizures), surgery to remove that area may stop future seizures or make them easier to control with medicine. Epilepsy surgery is mostly used when the seizure focus is located in the temporal lobe of the brain.
    • Other treatments. When medicines do not work and surgery is not possible, other treatments can help. These include vagus nerve stimulation, where an electrical device is placed, or implanted, under the skin on the upper chest to send signals to a large nerve in the neck. Another option is the ketogenic diet, a high fat, low carbohydrate diet with limited calories.
  • There are several ways you can find a neurologist or an epileptologist near you. Your primary care or family provider can tell you about types of specialists. The National Association of Epilepsy Centers also provides a list of its member centers, organized by state.

Whether you’re going in for your first appointment or you have been to several, it is beneficial to prepare in advance to help make the best use of your visit.

  • What is the exact diagnosis?
  • What is likely causing the seizures?
  • What are the treatment options, and what are some alternative approaches?
  • What side effects can be expected with treatment, and how can they be managed?
  • What kinds of tests do we need, and would more frequent testing help?
  • Should we see an epileptologist?
  • Ask about seizures that occur during sleep.
  • What types of devices exist that can alert a caregiver when seizure activity occurs?
  • Ask about MRI tests, both with and without contrast.
  • Ask the doctor to discuss the risks presented by epilepsy, including SUDEP.
  • What should prompt a call between scheduled visits?
  • Self-management is what you do to take care of yourself. You can learn how to manage seizures and keep an active and full life. Begin with these tips:
    • Take your medicine.
    • Talk with your doctor or nurse when you have questions.
    • Recognize seizure triggers (such as flashing or bright lights).
    • Keep a record of your seizures.
    • Get enough sleep.
    • Lower stress.

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