Epilepsy – What you should know
Epilepsy: a practical guide for the person living with it—and the people who love them
Epilepsy can feel unpredictable, and that unpredictability can be stressful for everyone involved. The goal of this article is to replace fear with usable knowledge: what epilepsy is, what seizures can look like, how to treat and manage it day-to-day, what to do during a seizure, and how loved ones can support without taking over.
(This is general education, not personal medical advice. If you’re worried about new seizures, worsening seizures, or medication side effects, it’s worth contacting a clinician who treats epilepsy.)
1) What epilepsy is (and what it isn’t)
Epilepsy is a brain disorder that causes repeated seizures. A seizure is a change in normal brain activity that can last from seconds to a few minutes. (CDC)
One seizure doesn’t always mean epilepsy. Many people have a single seizure in their lifetime, and epilepsy is typically defined by a pattern/risk of recurring unprovoked seizures (there are formal clinical definitions used by specialists). (World Health Organization)
Epilepsy isn’t contagious. You can’t “catch” it from someone else. (CDC)
Most people with epilepsy can live full lives. Treatment works well for many, though some people need more support and different approaches to get good seizure control. (CDC)
2) Seizures don’t always look like what movies show
A lot of people picture only the “fall down and shake” kind of seizure. That’s real—but it’s not the only form.
Seizures might look like:
- staring and being unresponsive
- confusion, wandering, or not making sense
- unusual movements (lip smacking, fidgeting)
- sudden loss of muscle tone (a drop)
- full-body stiffening/jerking with loss of awareness (CDC)
The big categories you’ll hear
- Focal seizures: start on one side/area of the brain. Awareness can be intact (focal aware) or affected (focal impaired awareness). Sometimes they spread and become a convulsive seizure. (CDC)
- Generalized seizures: begin (or appear to begin) on both sides of the brain at once and often affect awareness. (CDC)
- Unknown onset: when the start isn’t observed (for example, some night seizures). (Epilepsy Foundation)
Why this matters: seizure type strongly influences which treatments are most likely to help. (Epilepsy Foundation)
3) Getting the right diagnosis really matters
Not every “seizure-like” event is epilepsy. Some events that can mimic seizures may have other physical or psychological causes (for example, low blood sugar, heart rhythm issues, and functional/dissociative seizures). That’s one reason a careful evaluation is so important. (Epilepsy Society)
Clinicians diagnose epilepsy by combining:
- a detailed history of what happened (witness descriptions help a lot)
- a neurologic exam
- EEG (records brain electrical activity)
- brain imaging like MRI, when needed, to look for structural causes (Mayo Clinic)
Practical tip: If it’s safe, a loved one can record a short video of an episode to show the clinician. That can speed up accurate diagnosis.
4) Treatment: what helps, and what “success” can look like
Epilepsy treatment is individualized—but there are common pillars.
Anti-seizure medicines
For many people, medication is the first and most effective step. CDC notes medicines work for about 2 in 3 people with epilepsy, and it can take time (and sometimes combinations) to find the best fit. (CDC)
Key habit: Take medicine exactly as prescribed. Missing doses can raise seizure risk and can increase the chance of serious complications. (CDC)
If seizures aren’t controlled
If seizures continue, other treatments may be considered, such as:
- surgery (for certain seizure patterns)
- devices (neuromodulation like vagus nerve stimulation)
- dietary therapies (like ketogenic diet—medical supervision matters) (CDC)
A hopeful reality check
With proper diagnosis and treatment, it’s estimated that up to ~70% of people could live seizure-free. (World Health Organization)
That doesn’t mean everyone becomes seizure-free—but it does mean there are real reasons to keep working the plan with your clinician, especially if seizures persist.
5) Daily life: reducing seizures and staying safe
Know your triggers (if you have them)
Not everyone has triggers, and triggers don’t cause epilepsy—but they can make seizures more likely for some people. (CDC)
Commonly reported triggers include:
- lack of sleep
- missed medication
- stress
- alcohol or substance use
- illness
- flashing lights/patterns (for a smaller subset)
- hormonal changes (CDC)
What works in real life: a simple “seizure log” (sleep, stress, meds, alcohol, illness, menstrual cycle, time of day) can reveal patterns you can actually act on.
Driving and independence
Driving rules depend on where you live. For example, CDC notes many U.S. states require a seizure-free period (length varies by state). (CDC)
In the UK, guidance includes notifying the DVLA and following their rules about when you can drive again. (nhs.uk)
This topic can feel emotional because it’s tied to independence. It helps to treat it like any other safety rule: temporary restrictions are about keeping you and others alive.
Water safety
Swimming and water sports can be risky—avoid swimming alone and talk to your clinician about what’s safest for your situation. (CDC)
6) Seizure first aid everyone should know
If you only take one thing from this article, take this.
What to do during a seizure
CDC’s key steps include:
- Stay calm and stay with the person
- Move dangerous objects away
- If they’re on the ground, turn them gently on their side to help keep the airway clear
- Time the seizure
- When it ends, help them recover somewhere safe; reassure them and explain what happened (CDC)
What NOT to do
- Don’t hold the person down
- Don’t put anything in their mouth
- Don’t give food or water until they’re fully alert (CDC)
When to call emergency services (911 in the U.S.)
Call if:
- the seizure lasts > 5 minutes
- they have another seizure soon after
- they have trouble breathing or waking up
- they’re injured
- it happens in water
- it’s their first seizure
- they are pregnant or have diabetes and lose consciousness (CDC)
7) The serious stuff, explained gently: prolonged seizures and SUDEP
Status epilepticus (a medical emergency)
Repeated seizures close together or a seizure that won’t stop can raise risk of brain injury or death and needs urgent care. (CDC)
SUDEP (sudden unexpected death in epilepsy)
SUDEP is rare, but it’s a real concern many families worry about. CDC defines SUDEP as death in someone with epilepsy that isn’t due to injury, drowning, status epilepticus, or another known cause. (CDC)
CDC notes:
- Experts estimate roughly 1 in 1,000 U.S. adults with epilepsy per year may die from SUDEP (lower in children). (CDC)
- Main risk factors include generalized seizures and uncontrolled/frequent seizures. (CDC)
- Taking seizure medicine as prescribed is highlighted as one way to lower risk. (CDC)
This is a good topic to discuss directly with an epilepsy clinician—because the best risk-reduction plan is almost always: better seizure control + consistent medication + a clear action plan. (CDC)
8) Make a plan (this reduces panic for everyone)
A Seizure Action Plan is a one-page “what we do if X happens” document. Mayo Clinic describes it as a roadmap (especially useful for schools/work) that includes seizure type, what the person’s seizures look like, whether rescue medication is used, and when to contact family or seek urgent help. (Mayo Clinic)
What to include:
- seizure types and typical length
- what’s normal after a seizure (confusion? sleep?)
- when to call emergency services
- rescue medication instructions (if prescribed)
- emergency contacts
- clinician info
- allergies/other conditions
9) The relationship side: how to support without smothering
For the person with epilepsy
You deserve two things at the same time:
- safety
- agency (control over your own life)
A good balance sounds like:
- “Here’s what I need help with during/after a seizure.”
- “Here’s what helps me feel normal again afterward.”
- “Here’s what doesn’t help (even if it’s well-intended).”
Also: mood changes, loneliness, and anxiety/depression can show up alongside epilepsy. That’s not weakness—just part of the health picture. CDC explicitly notes the mental health impact and emphasizes support. (CDC)
For loved ones
Your job isn’t to become the “seizure police.” Your job is to become a steady teammate.
What helps most:
- Learn seizure first aid (practice the steps mentally)
- Help build the seizure action plan
- Encourage medication routines without shame (“Want a reminder system?” beats “Did you forget again?”)
- Ask what support feels respectful (“Do you want me to check in, or give you space after?”)
Also: caregiver stress is real. If you’re constantly on edge, it’s worth getting support too.
(If anyone is in immediate emotional crisis in the U.S., 988 is available for urgent mental health support.) (CDC)
10) A short “pocket card” summary
During a seizure:
- Stay calm, stay with them
- Clear hazards, cushion head if needed
- Turn on side if on the ground
- Time it
- Reassure after
Never:
- restrain
- put anything in the mouth
- give food/water until fully alert (CDC)
Call emergency services if:
- 5 minutes
- repeats
- breathing/waking problems
- injury/water
- first seizure
- pregnancy/diabetes with loss of consciousness (CDC)
Trusted places to learn more (and share with family)
If you want a “single click” resource hub, these are consistently solid:
- CDC’s Epilepsy pages (basics, treatment, first aid, safety) (CDC)
- World Health Organization epilepsy fact sheet (global perspective + stigma) (World Health Organization)
- Epilepsy Foundation (seizure types, treatment options, first aid training) (Epilepsy Foundation)
- NHS epilepsy overview (practical living issues like driving and pregnancy considerations) (nhs.uk)
