Caregiver Guide

Epilepsy is a complex and often confusing disorder. It can be scary if a loved one has a seizure and you don't know what to expect or how to respond. Knowing what's happening and what you should do is important when caring for someone with epilepsy. Being informed and prepared is the best way to fight back against the neurological condition.

While epilepsy concerns vary depending on age, there are some general-care measures that everyone who is around someone with epilepsy should know.

First, it's important to know what kind of epilepsy your loved one has and what it means. Not all seizures are the same.

• Tonic-clonic (grand mal): This is the seizure more commonly associated with epilepsy. The person loses consciousness, falls to the ground, and suffers from convulsions. It can last between five and 20 minutes before the person regains consciousness. Fortunately, oftentimes the patient will receive some kind of advanced warning that a seizure is coming, otherwise known as an aura.

• Absence (petite mal): During this seizure, only a loss of consciousness occurs without the motor response. The person will seem to stop what they are doing and stare off for a short time. They have no memory during that period.

• Myoclonic: This type involves brief jerking movements from both sides of the body, ranging from subtle to dramatic but the person is conscious during it. These are most common in infants.

• Complex partial: Automatic repetitive behavior is a key aspect of the complex partial seizure. A person will repeat a small gesture, like moving his or her mouth or picking at an object, for a short time while his or her consciousness is altered. Also during this kind of seizure – which research suggests occurs in the frontal lobe – a person might have uncontrollable laughter or fear, experience deja vu or hallucinations, or smell unusual odors.

• Simple partial: The most subjective of all seizures, simple partial seizures are characterized by brief altered or unusual sensations, detachment, inability to speak, or altered senses. Often, they affect emotions with sudden, unexplainable feelings of fear, happiness, anger, or sadness. Sometimes a euphoric or heightened consciousness-like feeling occurs.

While the partial or myoclonic seizures require no outside assistance and often pass unnoticed by others, the more serious seizures require immediate care, especially the tonic-clonic seizures and others that affect the whole brain.

Stress, sleep deprivation, or being emotionally upset can heighten the risk of a seizure, so caregivers should focus some effort on a person's mental well-being. That includes paying attention to emotional, social, psychological, and work relationships and stressors.

Often those who experience an aura are able to prepare themselves for the oncoming seizure. If they are able to articulate that to you, then you can provide some help, even if it is letting the person know you won't leave his or her side.

If your loved one has a seizure, it's important to remain calm. It is not uncommon for a person to fall asleep after the seizure for up to 20 minutes. Stay with the person, noting the length of the seizure.

When helping a friend or loved one prepare for a seizure, follow these other steps:

• Clear the area around the person of anything they might hit.

• Cushion head with something soft.

• Loosen clothing around his or her neck.

• Turn the person to the side to open the airway.

• Do not attempt to put anything in the person's mouth. Contrary to popular belief, a person having a seizure cannot swallow his or her tongue.

• Do not attempt to hold the person still.

• Do not attempt CPR unless the person has stopped breathing.

• If the seizure continues longer than five minutes, call 911.

• Reassure the person once they regain consciousness.

Encountering a seizure for the first time might be a scary thing to witness, but your help can make a world of difference to the person going through it.

Those with epilepsy can live regular lives with the right treatments and precautions. Still, there are moments when they might need assistance. The right care, comforting words, and some understanding go a long way.