Epilepsy 101

Empowering Epilepsy Conference

Maksim Parfyonov, MD FRCPC

Cleveland Clinic Epilepsy Center

October 13, 2026

Today

Epilepsy is common

1 in 26

people will develop epilepsy at some point in their life

  • About 3.4 million people in the U.S. and 50 million worldwide
  • About 150,000 new diagnoses in the U.S. each year
  • Most common in young children and adults over 60

What is a seizure?

  • A sudden, brief change in how the brain works
  • Caused by a burst of abnormal electrical activity in a group of brain cells
  • Brain cells normally “talk” in an organized way. During a seizure, many fire all at once
  • Most seizures stop on their own within 1 to 3 minutes

Where it starts shapes what you see

Brain area What the person may notice
Movement area Jerking or stiffening of an arm or leg
Vision area Flashing lights or shapes
Language area Trouble speaking or understanding
Temporal lobe Déjà vu, fear, a rising feeling in the stomach, staring
Both sides at once Loss of awareness, convulsion

This is why seizures can look so different from one person to the next.

Three phases of a seizure

  • An aura is the very start of a focal seizure. It can be a useful warning to get somewhere safe
  • Recovery can take minutes to hours. Confusion and sleepiness afterwards are expected

Provoked or unprovoked?

A febrile seizure in a toddler is frightening to watch, and is usually not epilepsy.

When is it epilepsy?

A person has epilepsy if any one of these is true:

One seizure does not always mean epilepsy. Some people have a single seizure and never have another.

Fisher et al., Epilepsia 2014

Things that can look like seizures

Getting the diagnosis right comes first. A phone video of the event is one of the most helpful things you can bring to an appointment.

Types of seizures

Older names you may still hear: grand mal (tonic-clonic), petit mal (absence), complex partial (focal impaired awareness).

What causes epilepsy?

Six broad groups:

  • Structural: scar, stroke, tumour, malformation
  • Genetic: often new, with no family history
  • Infectious, metabolic, immune
  • Unknown: still about half of people

In older adults, stroke and dementia are common causes.

The ILAE framework: seizure type, then epilepsy type, then syndrome, with the cause considered at every step.

How is it diagnosed?

  • The story of what happened, from witnesses too
  • Video of the event
  • EEG to look at the brain’s electrical activity
  • MRI to look at the brain’s structure
  • Sometimes blood and genetic tests

The next talk, Testing in Epilepsy, covers all of this in detail.

An EEG “spark” between seizures: a spike that supports the diagnosis.

Treatment: Anti-Seizure Medicines

No seizures, no side effects, on the simplest treatment possible.

About 2 in 3 people become seizure-free with medication.

Taking medication well

  • Same time every day. Pillboxes and phone alarms help
  • Start low, go slow
  • Never stop suddenly without talking to your team
  • Report side effects. There are usually other options
  • Ask about cost. Assistance programs exist
  • Keep an up-to-date medication list with you

When medications are not enough

  • After two well-chosen medications have not worked, the chance that a third alone will work is low
  • This is called drug-resistant epilepsy (about 1 in 3 people)
  • First, double-check the diagnosis and the dose
  • Then ask about a comprehensive epilepsy center. Options include:
    • Epilepsy surgery or laser ablation
    • Devices: VNS, RNS, DBS
    • Dietary therapy (ketogenic diet)
    • Newer and targeted medications

Vagus nerve stimulator (VNS): a small device under the skin of the chest.

Know your triggers

Common triggers:

  • Missed medication
  • Poor or short sleep
  • Alcohol, or withdrawal from it
  • Illness and fever
  • Stress
  • Menstrual cycle
  • Flashing lights (a small group of people)

A seizure diary helps you and your team spot patterns.

Seizure first aid

Time it. Stay calm and stay with the person.

The recovery position, once the jerking stops.

When to call 911

  • Nothing in the mouth. A person cannot swallow their tongue
  • If a rescue medication has been prescribed, follow the seizure action plan
  • A one-page seizure action plan for school, work and family is worth asking for

Safety at home

  • Water is the biggest risk: showers over baths, never swim alone
  • Care with heights, ladders and hot stoves
  • Bathroom doors unlocked
  • Padding on sharp corners if falls are common
  • The right level of caution depends on how well seizures are controlled

Driving and work

  • Rules differ by state. Your neurologist will tailor advice to your seizures
  • Pause driving during medication changes
  • Jobs with driving, heights, water or heavy machinery may need adjustments. Many accommodations are possible

Tolchin et al. (AAN/AES/Epilepsy Foundation), 2025. State-by-state rules: epilepsy.com

Everyday life

  • Medical ID bracelet or phone medical ID
  • Pack extra medication in your carry-on
  • Keep doses on schedule across time zones

Wearable seizure alert devices can notify family during convulsive seizures, including at night.

SUDEP

Sudden Unexpected Death in Epilepsy

  • About 1 in 1,000 adults with epilepsy each year. Lower in children
  • Biggest risk: frequent tonic-clonic seizures, especially in sleep

What lowers the risk

  • Take medication every day
  • Push for better seizure control
  • Nighttime supervision or alert devices for those with night seizures

Harden et al., Neurology 2017

More than seizures

  • About 1 in 3 people with epilepsy will have depression or anxiety at some point
  • Memory, attention and learning difficulties are common, and help is available
  • Children may need school supports
  • Sleep matters for mood and for seizures

Mood and memory are part of epilepsy care. Bring them up at every visit.

Take-home points

  • A seizure is a brief electrical storm. Epilepsy is an ongoing tendency to have them
  • Most people become seizure-free with medication
  • If two medications have not worked, ask about an epilepsy center
  • Know seizure first aid, and when to call 911
  • Sleep, medication routine and a seizure diary go a long way
  • You are part of the care team

epilepsyhandbook.com

Thank you

Questions?