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5 Essentials Epilepsy Caregivers Should Know

Posted on June 30, 2023

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. Although individuals with epilepsy all have unique needs, there are some basics that every caregiver ought to know, like medication side effects and how to provide seizure first aid. Here’s a quick list to keep in mind, along with an important reminder to collaborate with the neurology health care provider on treatment options and care decisions.

Remember, 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, and the symptoms of each may vary. When caring for someone with epilepsy, you’ll need to see and understand what’s going on to respond appropriately and report back to the doctor with an accurate description of what happened.

According to the International League Against Epilepsy, there are three primary types of seizures. Focal-onset seizures start in a distinct area of the brain. However, generalized-onset seizures affect both sides of the brain at the same time. A third type, unknown onset, happens when someone is alone or asleep and wasn’t witnessed by another person.

All types of seizures can cause motor symptoms or nonmotor symptoms. Examples of motor symptoms in focal-onset seizures include:

  • Fast muscle twitching
  • Jerking movements
  • Limp or weak muscles
  • Tense and rigid muscles

During a focal-onset seizure, the person may also perform repetitive motions like rubbing their hands together, clapping, chewing, or lip smacking. Limp or tense muscles and muscle twitching can also happen in generalized-onset seizures. In addition, sustained rhythmic jerking or epileptic spasms (where the body extends and flexes repeatedly) can happen.

Some seizures involve nonmotor symptoms, which aren’t always as readily noticeable. In a focal-onset seizure, the nonmotor symptoms may include feeling hot or cold, cognitive changes, sudden emotions, goose bumps, or a lack of movement, known as behavior arrest. Nonmotor symptoms in a generalized-onset seizure can involve staring spells, brief eyelid twitching, or twitching of another body part.

Caregivers play an essential role in observing seizures. Although you don’t need to know all the terminology or be a seizure expert, you should understand what to watch for and expect.

2. Understand How To React During a Seizure

In addition to keeping track of the seizure signs and symptoms, you’ll need to ensure the person you’re caring for is safe during a seizure. An epilepsy and seizure training program will allow you to practice and see demonstrations of what to do during a seizure. You can call your local hospital to see if any programs are available.

During a seizure, remain calm and gently place the person on their side for better breathing. Check for anything tight around the neck, remove their eyeglasses, and put something soft and flat under the person’s head. Don’t hold someone down or try to restrain them during a seizure. Instead, take away anything nearby that’s hard or sharp to clear the space and 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 someone’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 probably don’t need medical attention just because of a seizure alone. Although you’ll want to inform their doctor that a seizure occurred, you don’t need to call 911 unless the following conditions occur:

  • 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.
  • An injury happens during the seizure.
  • The person is in water during the seizure.
  • After the seizure, the person has trouble walking or breathing.
  • The individual has additional health conditions, like diabetes, pregnancy, or heart disease.

Ask the neurologist about any other reasons you should seek emergency care. When in doubt, you can always call to speak with a health care professional and determine if 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 your schedules to make sure you can be around for high-risk situations. 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.

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 ensure they’re safe before leaving them alone. Having backup people, like local family members, is helpful so you can reach out if you cannot 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.

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

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. 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. 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 (like substance abuse) that warrant medical treatment.

It’s easy to find yourself focusing on epilepsy alone, but you shouldn’t lose sight of other risk factors and potential health conditions. Caring for the whole person means paying attention to their physical and emotional needs, including mental health changes. Aside from epilepsy treatment, overall quality of life and well-being must be on your radar.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 115,000 members and caregivers come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

As a caregiver, do you have any formal first-aid training for epileptic seizures? How do you address mental health issues as part of epilepsy care? Share your experience in the comments below, or start a conversation by posting on your Activities page.

    Posted on June 30, 2023
    All updates must be accompanied by text or a picture.

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    Kiran Chaudhari, M.B.B.S., M.D., Ph.D. is a specialist in pharmacology and neuroscience and is passionate about drug and device safety and pharmacovigilance. Learn more about him here
    Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here

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