Loving Someone With Epilepsy

When Zayan first told me that he has epilepsy, I didn’t believe him.  “You mean seizures, right?”  I was embarrassed at how much I didn’t know.

Epilepsy is a disorder of the brain that triggers recurrent seizures. It can be caused by different conditions that affect a person’s brain. A person is diagnosed with epilepsy when they have had two or more seizures that are not caused by another medical condition such as a high fever or low blood sugar.

Zayan was thirteen years old when he had his first seizure in his school computer lab in Dhaka, Bangladesh. “The moments leading up to my seizure are hazy, but when I woke up in the hospital, my mind was wiped clean.  I didn’t recognize my own father, whose tear-strewn face was fixated on mine.  I couldn’t even remember how to talk.”

Following the incident, Zayan took a long break from school to seek medical care.  He was diagnosed with idiopathic epilepsy, which is caused by an unknown factor that may be genetic. Epilepsy can be caused by different conditions, including stroke, brain tumor, brain infection, or traumatic brain injury. Zayan is one of the 60% of people where the cause of epilepsy is unknown.

Caring for someone during a seizure

As my friendship with Zayan grew, I became passionate about understanding how epilepsy impacted his daily life. One morning I witnessed a seizure suddenly take over his body and it was one of the most frightening moments we shared together. That experience made learning seizure first aid a priority for me so that I could take care of Zayan if and when he had another seizure.

If you know someone living with epilepsy, you might have to care for them during or after a seizure. The goal of seizure first aid is to keep the person safe until the seizure stops on its own. Stay with the person until the seizure ends and he or she is fully awake. After it ends, help the person sit in a safe place. Once they are alert and able to communicate, tell them what happened in very simple terms. Comfort the person and speak calmly.

You can take action to help someone during a seizure:

• Ease the person to the floor.
• Turn the person gently onto one side.  Loosen ties or anything around the neck that may make it hard to breathe.
• Clear the area around the person of anything hard or sharp to prevent injury.
• Put something soft and flat, like a folded jacket, under his or her head.
• Remove eyeglasses.
• Time the seizure.
• Check to see if the person is wearing a medical bracelet or other emergency information.
• Keep yourself and other people calm.

  

Call 911 if…

• The person has never had a seizure before.
• The person has difficulty breathing or waking after the seizure.
• The seizure lasts longer than 5 minutes.
• The person has another seizure soon after the first one.
• The person is hurt during the seizure.
• The seizure happens in water.
• The person has a health condition like diabetes, heart disease, or is pregnant.

Knowing what NOT to do is also very important for keeping a person safe during or after a seizure. Never do any of the following things:

• Do not hold the person down or try to stop his or her movements.
• Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
• Do not try to give mouth-to-mouth breaths (like CPR). People usually start breathing again on their own after a seizure.
• Do not offer the person water or food until he or she is fully alert.

Supporting someone with epilepsy

After his first seizure, Zayan struggled to understand how epilepsy would affect his life – Can I still play soccer?  Will my friends still like me? Will my friends and family look down on me or look at me differently?  Will the cost of my medicines be a burden to my family?  Will I be a burden to my family?

The first medicine Zayan was prescribed helped his seizures, but caused a lot of side effects, including rapid weight gain. After finding a medicine that worked for him, Zayan spent years learning to overcome the medicine’s effect on his mood and relationships. He is grateful for the support he received and that those close to him were able to come to terms with his condition.

With the support of his family and friends, Zayan has learned to keep his seizures in check and lead a normal life.  Today he has aspirations to become a pharmaceutical researcher who finds effective treatment methods for coping with epilepsy.

Resources for family, friends, and caregivers

If you have a loved one with epilepsy you can:

• Learn about epilepsy.
• Learn seizure first aid.
• Listen. Sometimes this is the best form of support.
• Ask what you can do to help.

People who take care of someone with epilepsy should learn everything they can about the disorder, and the specific type of seizures their loved one has.  Caregivers can work with their loved one’s healthcare provider to learn about treatment options, manage medicine side effects, and address other medical conditions the person may have. Caregivers may also benefit from connecting to others in their community who also deal with epilepsy.

Learn more

• CDC: Information for Families and Friends
• CDC: “You are Not Alone” toolkit for parents of teens with epilepsy.
• CDC: Managing Epilepsy
• CDC: Epilepsy and Disaster Preparedness
• Epilepsy Foundation

Update: At the authors request, the images included in the original post have been updated.