Epilepsy Explained: It’s More Than Seizures

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One of the biggest misconceptions about Epilepsy is that people think once the epileptic seizures are controlled, everything is fine and life is easy once again.

Well, I am here to say – that it couldn’t be further from the truth.

Epilepsy, like ADHD and Autism, exists on a spectrum — and how it affects a person depends on the individual, brain region, and seizure type – even if seizures are “controlled”.

What is Epilepsy?

Epilepsy is an underrepresented complex neurological condition that causes seizures and other daily struggles. A seizure happens when there’s a sudden surge of electrical activity in the brain — almost like a power surge that temporarily scrambles signals and can fry electrical components.

In a healthy brain, neurons communicate through carefully timed electrical impulses. But in epilepsy, this balance is disrupted. Groups of neurons can suddenly fire all at once, in a way that’s uncontrolled and excessive — like a circuit shorting out. Where and how this activity spreads in the brain is what shapes the type and severity of the seizure.

Living with epilepsy can feel like balancing on a wall — blindfolded, hands tied, unsure where to place your foot next.

Seizures aren’t always dramatic or obvious. Some are just a few seconds of zoning out, a weird feeling in the stomach, or muscles twitching without warning — while others involve stereotypical epileptic tonic-clonic seizures.

What Triggers Seizures?

Triggers vary from person to person, and just because something triggers one person doesn’t mean it will for another. Some people have none at all. Others may have several. And sometimes, seizures happen without warning or reason at all.

Here are some of the most common triggers reported by people with epilepsy:

• Sleep deprivation: A lack of proper rest is one of the most common triggers — even just staying up too late or poor-quality sleep can lower the brain’s seizure threshold.
• Stress or anxiety: Emotional stress doesn’t always feel like a physical trigger, but it can have a powerful effect on the brain. For some, even low-level daily stress builds up and contributes to seizure activity.
• Flashing lights or patterns: Though less common than people assume, photosensitivity can cause seizures in response to flashing lights, flickering screens, or certain visual patterns.
• Hormonal changes: For some, seizures are linked to the menstrual cycle or hormonal shifts. This is called catamenial epilepsy and often requires a different treatment approach.
• Illness or fever: Being unwell — especially with a fever — can increase seizure likelihood in some people.
• Missed medication: Skipping doses or inconsistent medication timing is a major trigger and can make seizures more frequent or severe.
• Alcohol or substance use: Drinking heavily, withdrawal from alcohol, or using certain drugs can lower seizure threshold and interact dangerously with anti-seizure meds.
• Overstimulation or sensory overload: Environments that are too loud, bright, crowded, or overwhelming can be difficult to process and trigger focal activity for some people.

It’s important to note that triggers are not the same as causes. Epilepsy is a neurological condition — triggers just make seizures more likely to occur in people who already have it.

Keeping a seizure diary can help identify patterns, especially when memory is patchy or post-seizure recall is limited. Not every trigger can be avoided, but knowing your own risk factors gives you more control — and that alone can make a big difference.

Different Types of Epilepsy

There isn’t one single type of epilepsy — there are many. The type a person has depends on where in the brain the seizure starts, and how far it spreads throughout the brain.

Focal Seizures

A focal seizure is generally isolated to one area of the brain. Sometimes though this activity can spread to other areas of the brain causing a secondary generalisation.

Focal aware

Previously known as a “simple partial”, this means you’re conscious during the seizure. You might feel strange sensations — like tingling, fear, déjà vu, or a sudden wave of nausea. These often come from the temporal or frontal lobe, affecting memory, emotions, or movement.

Focal impaired awareness

Formerly “complex partial”, this often involves confusion, loss of awareness, or automatic movements like lip-smacking or fidgeting. These are also linked to the temporal lobe and can deeply affect memory and communication.

Generalized seizures

Generalised seizures affect more than one area of the brain at a time hence the name ‘generalised’.

Absence seizures

Often seen in children. These look like sudden “switch offs” — blank stares, stillness, or rapid blinking. They affect consciousness, often without warning, and may be mistaken for daydreaming.

Tonic-clonic seizures (previously “grand mal”)

These are what many people picture when they hear “seizure.” The body stiffens (tonic phase), then jerks rhythmically (clonic phase). There’s usually a loss of consciousness and a longer recovery. These can involve multiple brain areas, including motor and sensory regions.

Myoclonic seizures

Quick, shock-like muscle jerks — often in the arms or upper body. These usually last just seconds but can happen in clusters. They come from disruptions in the motor cortex, especially in generalized epilepsy syndromes like Juvenile Myoclonic Epilepsy (JME).

Clonic seizures

Rhythmic, repeated jerking movements. These look like the clonic phase of a tonic-clonic seizure but happen on their own. They are connected to motor brain regions and can affect both sides of the body or just one.

Tonic seizures

Sudden stiffening of muscles, usually in the back, legs, or arms. The person may fall or freeze mid-movement. These are often tied to frontal lobe disruptions and can occur during sleep or waking hours.

Atonic seizures (also known as “drop attacks”)

A sudden loss of muscle tone causes the person to collapse or drop objects. These are short but dangerous due to the risk of injury. Atonic seizures involve motor regulation areas and are common in people with epilepsy syndromes like Lennox-Gastaut.

Unknown Onset

Sometimes, doctors don’t know where the seizure starts — especially if it happens at night or there’s no EEG data which is quite common. General EEG scans are quite weak and only detect surface level electrical signals within the brain which often means people are left not knowing where seizures originate in the brain.

There are ways for doctors to test further but these often mean more invasive methods to find the root causes. These tests are usually reserved for people experiencing frequent, treatment resistant seizures.

Seizures are damaging to the brain, so, its a doctors priority to get them under-control as fast as they can. There are distinct features of epileptic seizures that enable doctors to accurately diagnose the condition rather than attributing it to something like Psychogenic Non-Epileptic Seizures (PNES) which happens quite often.

If you or someone you know is struggling to get diagnosed, try and get some video evidence. It is often the difference between a quick diagnosis and one that takes longer.

How do seizures affect the brain?

Seizures don’t just come and go without leaving a mark. Over time, they can affect how the brain functions — especially if they’re frequent or not well-controlled.

Every seizure is essentially a burst of uncontrolled electrical activity in the brain. If seizures are left untreated and uncontrolled, certain brain areas can become overworked, damaged or they can even become stuck in unhealthy cycles that results in a myriad of other challenges no one ever considers.

Short-term Impact: The Postictal Phase

The moments after a seizure are often overlooked, but for many people, the aftermath can be just as hard — if not harder — than the seizure itself. This is known as the postictal phase. It’s the brain’s recovery window, and how long it lasts can vary from minutes to hours — sometimes even days.

During this time, people might experience:

• Extreme fatigue: the kind that makes getting out of bed feel impossible — like your body has shut down completely.
• Confusion or disorientation: not knowing where you are, how you got there, or what just happened.
• Memory loss / amnesia: losing time or forgetting conversations, sometimes even hours after a seizure.
• Speech or language issues: slurred words, inability to speak, or struggling to find the right words — even when you know what you want to say.
• Dissociation: feeling disconnected from your body or surroundings — like you’re behind glass, or watching yourself from the outside.
• Sensory overload or shutdown: lights too bright, sounds too sharp, touch feeling wrong — or the world going completely flat and muted.
• Headaches or migraines: especially common after tonic-clonic seizures, sometimes lasting hours or days.
• Muscle soreness or injury: lingering aches, bitten tongue, or bruises from falls — often without memory of how they happened.
• Emotional shifts: crying without knowing why, irritability, sudden numbness, or feeling emotionally raw and exposed.
• Time distortion: minutes may feel like hours, or whole parts of your day might vanish from memory.
• Social misunderstanding: others may mistake recovery for laziness or distraction — while your brain is fighting to restart.

The postictal phase is also unpredictable. Some people bounce back quickly, while others need the whole day to recover. And because it’s invisible to others, it’s often mistaken for laziness or zoning out — when really, the brain is just doing its best to reboot.

Long-term Impact: The Accumulated Toll of Seizures

When seizures happen regularly, they can start to leave a longer-lasting imprint on the brain. Over time, especially without effective treatment, seizures may cause structural and cognitive changes.

Here’s what that can look like:

• Memory decline: especially in people with temporal lobe epilepsy. Long-term seizure activity can affect how the brain stores, retrieves, or connects memories.
• Slower thinking and processing: conversations feel harder to follow, information takes longer to absorb, and simple decisions can feel like puzzles.
• Executive dysfunction: trouble planning, organising, starting tasks, or switching between them — even when you’re mentally trying. This can overlap with conditions like ADHD, which co-occur with epilepsy at high rates.
• Emotional regulation issues: increased anxiety, mood swings, or depression. Long-term epilepsy can affect emotional centres in the brain and is often linked with comorbid mental health struggles.
• Chronic stress and hypervigilance: living with the unpredictability of seizures often causes heightened alertness, sleep disturbances, or a constant sense of “waiting for the next one.”
• Personality shifts: subtle or noticeable changes in behaviour over time — including increased irritability, social withdrawal, or emotional flattening — are commonly reported, especially in frontal or temporal lobe epilepsy.
• Reduced independence: limitations with driving, working, or managing daily tasks can affect confidence, autonomy, and even financial stability.
• Social isolation: feeling misunderstood, judged, or excluded due to stigma or unpredictability — often leading people to withdraw or mask their symptoms.
• Visible brain changes: long-term, uncontrolled seizures may lead to physical changes in brain structure — such as gliosis (scarring), volume loss, or atrophy in affected regions, especially visible on MRI scans.
• Developmental impacts in children: frequent seizures can interfere with learning, emotional development, and social skills during critical growth periods — often requiring extra support in school or therapy.
• Invisible disability burden: because much of epilepsy’s toll is cognitive or emotional, others may not see what you’re navigating daily — making it harder to ask for (or receive) support.

In children, repeated seizures can disrupt development. In adults, it can interfere with independence — affecting jobs, relationships, and even self-worth. And while not everyone experiences damage, it’s a real concern, especially for those with frequent or uncontrolled seizures.

It’s why neurologists work quickly to reduce seizure frequency. It’s not just about stopping the seizure — it’s about protecting the person behind it.

Bonus: Executive Dysfunction: Why Daily Tasks Feel So Hard

How epilepsy medication affects daily life

Once seizures are controlled, living with the aftermath isn’t the only challenge to deal with. For many, managing the side effects of epilepsy medication can be just as tough — and often invisible.

Anti-seizure medications (also known as anti-epileptic drugs or AEDs) are the cornerstone of epilepsy treatment, but they come with a wide range of effects that can influence nearly every aspect of daily life. And while they help prevent seizures, they can also affect how you think, feel, and function.

Here’s how epilepsy medication can impact day-to-day life:

• Cognitive fog: Many people describe feeling mentally slowed down — like your brain is stuck in low gear. Concentration, short-term memory, and processing speed can all take a hit.
• Fatigue and drowsiness: Some medications cause chronic tiredness or make you feel sedated, even after a full night’s sleep. This can make simple tasks feel exhausting.
• Mood changes: Certain medications — like levetiracetam (Keppra) — are linked to mood swings, irritability, depression, or even rage. These emotional shifts can come on suddenly and feel hard to control.
• Coordination and balance issues: Some AEDs affect motor control, making you feel dizzy, off-balance, or clumsy — especially at higher doses or when adjusting meds.
• Gastrointestinal issues: Nausea, appetite changes, or digestive discomfort are common, especially when starting a new medication.
• Hormonal or reproductive effects: Certain medications can interfere with menstrual cycles, fertility, and hormonal regulation — particularly in women and people assigned female at birth.
• Vitamin deficiencies and bone health: Long-term use of AEDs like phenytoin or carbamazepine can reduce vitamin D and calcium levels, increasing the risk of osteoporosis.
• Drug interactions and sensitivity: People with epilepsy often have to be careful about other medications or supplements, as interactions can alter seizure thresholds or intensify side effects.

Adjusting to these medications isn’t always linear. It can take months, sometimes years, of trial and error to find the “right” combination that controls seizures while minimising side effects – not just settling for survival.

Living with epilepsy means balancing seizure control, side effects, and daily challenges — often all at once. If you’re struggling with your current medication, you’re not alone. Don’t be afraid to speak up, ask questions, and advocate for what your brain needs. You deserve care that works with you, not against you.

For a breakdown of epilepsy medications and side effects, see the Epilepsy Foundation’s Medication Guide.

Wrapping up, for those at the back

Just to be clear — epilepsy isn’t over when the seizures are “under control.”

It doesn’t mean everything goes back to normal. For many people, the hardest part starts after the seizures stop.

There’s the mental fog, memory issues, and emotional shifts that come out of nowhere. The exhaustion that doesn’t lift. The post-seizure recovery that takes hours or days. The meds that help but also cause their own problems — from mood changes to fatigue to feeling not quite like yourself.

There are long-term effects too. Epilepsy can change how the brain works over time, and that affects thinking, emotions, independence, and confidence. These changes are real, even if you can’t see them.

So if someone says they have epilepsy, and they seem fine — don’t assume they are. They might still be dealing with symptoms, limitations, or side effects every single day.

Controlled seizures are a goal. But they’re not the finish line. For many, myself included, it is where recovery really begins.