If you’re good at thinking on your feet and staying calm during an emergency, you probably have what it takes to care for someone with epilepsy.

Everyone with epilepsy has unique needs. But there are some basics every caregiver should know, including possible medication side effects and what to do during a seizure.

Here’s a quick list to keep in mind. Remember, always work with the person’s neurologist or healthcare provider on treatment options and care decisions.

You don’t have to be perfect to be a good caregiver. You just have to be willing to learn and provide the level of support needed. Here’s how.

1. Learn How To Describe a Seizure

There are several different types of seizures. They can start in different parts of the brain and cause different symptoms.

When caring for someone with epilepsy, you’ll need to notice and understand what’s happening. That way, you can respond to seizure emergencies and report back to the person’s healthcare provider with an accurate description.

Types of Seizures

There are three basic types of seizures:

• Focal seizures, which start in a distinct area of the brain
• Generalized seizures, which affect both sides of the brain at the same time
• Unknown seizures, which may happen when someone is alone or asleep, so others don’t see what happened

Seizure Symptoms

Seizures can involve motor symptoms, nonmotor symptoms, or both.

Motor Symptoms

Examples of motor symptoms may include:

• Clenching teeth
• Drooling
• Fast muscle twitching
• Incontinence (loss of bowel or bladder control)
• Jerking movements
• Limp or weak muscles
• Rapid eye movements
• Tense and rigid muscles

In complex focal seizures, the person may also perform repetitive motions like blinking, grunting, or lip smacking.

Another possible symptom is sustained rhythmic jerking or epileptic spasms (when the body extends and flexes repeatedly).

Nonmotor Symptoms

Some seizures involve nonmotor symptoms, which aren’t always as noticeable.

Nonmotor symptoms may include:

• Bitter or metallic tastes
• Hearing unexpected sounds
• Skin tingling or numbness
• Staring
• Sudden emotions

Caregivers play an essential role in observing seizures. Although you don’t need to know every term or be a seizure expert, it helps to understand what to watch for and expect.

2. Understand How To React During a Seizure

In addition to keeping track of seizure signs and symptoms, you’ll need to help keep the person safe during a seizure.

Get Seizure First Aid Training

An epilepsy and seizure training program can help you practice and see demonstrations of what to do during a seizure. You can also call your local hospital to ask whether any programs are available.

Stay Calm

During a seizure, remain calm and gently place the person on their side for better breathing. Loosen tight clothing or jewelry around the neck. Remove their eyeglasses, and put something soft and flat under the person’s head.

Avoid Common Mistakes

Don’t hold someone down or try to restrain them during a seizure. Instead, create a safe space. Move away any hard or sharp objects to reduce the risk of injury.

It’s a common myth that someone can swallow their tongue during a seizure — that’s not true. Never put anything in the person’s mouth or offer them something to eat or drink until they’re fully conscious and alert.

3. Be Aware of When To Call the Doctor

People with epilepsy who have a history of seizures may not need emergency medical attention for every seizure. Still, let their healthcare provider know that a seizure happened.

Reasons To Seek Emergency Medical Help

You may not need to call 911 unless:

• The seizure lasts longer than five minutes. Start a stopwatch as soon as the seizure begins, if possible.
• A second seizure occurs shortly after the first one ends.
• The person has trouble breathing or waking up after the seizure.
• An injury happens during the seizure.
• The person is in water during the seizure.
• The person has never had a seizure before.
• The person has diabetes and loses consciousness.
• The person is pregnant.

Ask the neurologist about any other reasons you should seek emergency care. When in doubt, you can always call to speak with a healthcare professional and determine whether more follow-up is needed.

4. Figure Out When To Tag Along

Seizures can happen unexpectedly. If you don’t live with the person you’re caring for, you’ll need to coordinate schedules so you can be around for higher-risk situations.

When To Be Present

Examples include leisure activities in or near the water, like a trip to the beach or pool. It’s also a good idea to tag along for important medical visits so you can take notes and ask questions. Some people with epilepsy drive, but you can also help provide transportation if they don’t.

Find Extra Support

Unfortunately, it’s not always possible to predict when the person you’re caring for will need help. If they have a seizure, you may need to stick around longer than planned to make sure they’re safe before leaving them alone.

Having backup people, like local family members, is helpful so you can reach out if you can’t be there when needed. You can also encourage the person to wear a medical alert bracelet to help notify you of an emergency.

One MyEpilepsyTeam member shared how theirs works.

“I’ve had all my seizures over the last three years without family around, but I’ve got an Embrace bracelet, so it alerts caregivers you assign to let them know you’ve had a seizure. It’s by text and call alert,” they explained.

Using technology to help provide an additional level of safety and support can make you a more effective caregiver and offer greater peace of mind for everyone.

“I’ve got an Embrace bracelet, so it alerts caregivers you assign to let them know you’ve had a seizure. It’s by text and call alert.”

— A MyEpilepsyTeam member

5. Emphasize That Daily Routines Matter

Ideally, people with epilepsy should aim to prevent seizures in the first place. Maintaining healthy routines and getting enough sleep are essential for this goal.

Aim for Consistency

Caregivers can support condition management by encouraging a consistent sleep schedule, healthy eating habits, anti-seizure medication adherence, safe and regular exercise, and stress management.

Reach Out

Try to facilitate opportunities for the person you’re caring for to connect with others and join support groups so you’re not the only person they can depend on. Watch for signs of depression or unhealthy coping mechanisms, such as substance use, that may warrant medical support.

See the Big Picture

It’s easy to focus on epilepsy alone, but try not to lose sight of other risk factors and potential health conditions. Caring for the whole person means paying attention to physical and emotional needs, including mental health changes. Along with epilepsy treatment, overall quality of life and well-being should stay on your radar.

Join the Conversation

On MyEpilepsyTeam, people share their experiences with epilepsy, get advice, and find support from others who understand.

What are your top tips for caring for someone with epilepsy? Let others know in the comments below.