Answers to common questions about epilepsy

Magnetic Resonance Head Scan Images on Computer Monitor While Scanning.

Epilepsy is a complex disease that causes recurrent seizures. An epilepsy doctor who can pinpoint the cause of the seizures and provide a range of treatment options can be life-changing for patients. The University of Chicago Medicine specializes in this area and these experts.

UChicago Medicine has two NAEC-accredited Level 4 Comprehensive Epilepsy Centers — one for adults and one for children — which is the highest national designation for hospital expertise in treating all forms of epilepsy, as well as the ability to offer the full range of treatments, including social work and neuropsychological support.

We want people with seizures to live their best possible life. As a neurologist who specializes in medical and surgical treatment of adults with epilepsy, my priority is to personalize the treatment plan for every patient, even early on in the journey.

Here are some common questions that patients often ask me about epilepsy.

Are you born with epilepsy, or does it develop?

A little bit of both, depending on the age and the reason for your epilepsy. You can be born with a tendency to have seizures. If there’s an intrauterine injury to the brain tissue, maybe from a stroke or an infection, that may put you at risk for seizures early in life.

At other times, a brain injury later on in life, such as a major concussion, brain infection, a bleeding stroke or other trauma to the brain, can lead to epilepsy. Regardless of the kind of injury, the tendency to develop epilepsy is in your genes, just like the color of your eyes or your height.

If you’re born with a genetic defect in the genes that control the flow of electricity in the brain, it may cause seizures at various points in your life. It doesn’t mean you’ll start having seizures as soon as you’re born. Seizures can present early on in life, but they can also be dormant for a long time and then show up when other health issues arise.

Is epilepsy genetic?

About 30% to 40% of epilepsy is caused by genetic predisposition. Experts believe that, in many cases, a genetic predisposition combined with environmental triggers lead to epilepsy. A mutation in a person’s genes can put them at risk of developing epilepsy. Often, these are the genes that control the excitability of nerve cells (neurons) in the brain.

Genetic tests are widely available that may help plan treatment in some kinds of genetic epilepsy cases. Many people with genetic mutations may never develop epilepsy. It is important to know that genetic does not mean the same as inherited.

Is epilepsy inherited? Will I pass it on to my children?

A very small percentage (2-4%) of people have inherited epilepsy. Genetic generalized epilepsy is more likely to be inherited by children if a parent has it. Focal epilepsy, the most common type overall, is not usually inherited. First-degree relatives of people with inherited epilepsy have a twofold- to four-fold higher risk for epilepsy. Although that’s an increased risk, it is important to remember that the overall risk is still very low.

At what age does epilepsy usually start?

Across a person’s life span, there are two times when the chances of developing epilepsy are the highest: in children in their first year of life, and in adults ages 55 and up, as people develop strokes, brain tumors or Alzheimer's disease, which all can cause epilepsy.

If I have seizures, do I have epilepsy?

Often, yes, but not necessarily. If you have recurrent, repeated seizures that are not provoked by anything in particular, you have probably been given a diagnosis of epilepsy. The first year after being diagnosed with seizures or epilepsy is important in terms of getting on the right treatment plan, identifying triggers and patterns, and making sure an emergency action plan is formulated with your doctor.

Most people with epilepsy get better with the first or second medication they try. If a primary care doctor or a general neurologist is taking care of your epilepsy, and you’ve already tried two medications that haven’t worked, you'll definitely want to bring up the possibility of being evaluated at an epilepsy center like ours.

In-depth testing is needed to clarify whether the problem is epileptic seizures or another medical condition that mimics seizures or epilepsy. We can do that with video EEG monitoring in the hospital or by recording your brain waves in the home with ambulatory EEG monitoring. It helps us see how your brain waves behave during episodes. That gives us a lot of guidance for deciding whether seizure medications are needed, which medications are most likely to work and establishing the next steps.

Can marijuana help?

Research suggests that CBD, one of two major ingredients in marijuana, could potentially help control seizures. A number of studies have shown the benefit of specific plant-based CBD products in treating specific groups of people with epilepsy who have not responded to traditional therapies. There may even be some indirect benefit to your epilepsy because it can reduce anxiety, stress levels and improve sleep, all of which are known to trigger seizures.

The decision to use CBD is a very individual one and determined on a case-by-case basis. It does not replace medication. Synthetic cannabidiol products are only FDA-approved for specific types of epilepsy, so it’s important to talk to your physician about whether you would benefit from cannabidiol products. They can also interact with your medicines, so inform your doctor if you are taking or plan to try them.

What injuries can result from epilepsy?

Bruises, falls, breathing problems and burns are common. Falls can cause more serious problems, like broken bones, concussions and head injuries. While uncontrolled seizures increase the chance of injury, it often depends on the type and length of the seizure, where you’re at when it happens and whether it becomes a seizure emergency.

What is a seizure emergency?

It’s when there’s a long convulsive seizure (called a “grand mal,” a "tonic-clonic” or “convulsive status epilepticus") that lasts more than five minutes, or when there are many back-to-back seizures without the patient recovering in between to their normal self. It requires immediate attention.

Can I die from a seizure?

It’s unlikely, but it can happen. For example, a person can choke on their own vomit and die during a seizure. To prevent this, someone having a seizure should immediately be turned on their side.

Swimming or taking baths alone should be avoided, as drowning poses a risk, even in just a few inches of water. Driving or walking on a train platform also can pose a problem. Before getting behind the wheel of a car, people with epilepsy should check with their Secretary of State’s office to see if it’s safe and legal for them to drive.

These risk should not prevent a person with epilepsy from leading a safe and healthy life. It’s essential to learn seizure first aid and develop a Seizure Action Plan with your epilepsy doctor to avoid accidents. It will help you and your loved ones know what to do if a seizure or seizure cluster occurs.

Can I live a normal life with epilepsy?

Yes! With early, proper treatment, people with epilepsy can live full lives with minimal restrictions. A multidisciplinary approach, like the one available at UChicago Medicine, can help you get a head start on navigating your epilepsy and maximizing your quality of life. The first year after a seizure is critical in getting you on the right track to achieve both seizure freedom and to manage your side effects. An epileptologist can help guide you on what to expect.

Can a person with epilepsy have a healthy baby?

Yes, but for the best possible chance at seizure freedom and a healthy future family, it’s important to see an epileptologist who can identify the cause of your seizures and determine the safest medications to treat them before and during pregnancy.

The epilepsy care team will work with your obstetrician before, during and after your pregnancy and manage any extra steps, such as monitoring your medication levels during pregnancy. It’s important to avoid triggers during pregnancy, such as sleep deprivation or stress.

Can epilepsy be prevented?

No, but there is a lot of research ongoing in this area! Until more is known, you can help yourself by taking charge of your treatment, tracking your seizures, identifying and managing your seizure triggers and preventing seizure emergencies.

Hiba Haider, MD

Hiba Haider, MD

Hiba Haider MD, FACNS, FAES, is a board-certified neurologist specializing in the medical and surgical treatment of epilepsy in adult patients.

Read more about Dr. Haider