Epilepsy Caregiver Support Guide

“I will never forget the first time I saw my wife have a seizure. I felt pure panic, fear, confusion, uncertainty, and most of all helplessness. My knowledge of epilepsy came from what I’d seen on TV and movies. After a multitude of tests, hospital and doctors’ visits we received the diagnosis of epilepsy.  And I say ‘we’ because this is something that affects everyone who is involved. The doctor discussed treatments and follow up, but I left with more questions than were answered.  Most of all, “What do I do the next time she has a seizure?”

 

Over the years and countless seizures later I now know a lot more than I did back then. After talking with another man whose wife has epilepsy, we decided to create a support guide for other people in our shoes. Nothing can quite prepare you for watching your loved one have a seizure, but mentally preparing yourself and arming yourself with knowing what to do before, during, and after a seizure helps take away some of that fear and allows us to take care of the women we love.” – Blake G.

Caregiver Support Guide

Pre-Seizure Activity

1. UNDERSTAND SEIZURE TRIGGERS AND HOW TO AVOID THEM.

There are a multitude of things that can trigger a seizure. Here are some examples:

  • Missed Medication Dosage
  • Sleep Deprivation
  • Extreme or Chronic Emotional Stress
  • Low Blood Sugar
  • Hormonal Fluctuations (Menstrual Cycle)
  • Bright or Blinking Lights
  • Drugs or Alcohol
  • Fevers or Other Illness
  • Heat Stroke
  • Vitamin Deficiencies & Certain Foods

2. HAVE A SAFETY PLAN OF WHAT YOU NEED TO DO DURING A SEIZURE

3. KNOW WHEN TO CALL EMS (911)

4. BE AWARE OF ALL MEDICATION NAMES AND DOSES AND LOCATION OF RESCUE MEDICATIONS

Seizure Activity

Types of Seizures:

1. Tonic Clonic (Grand Mal) body stiffening, jerking, shaking, and loss of consciousness

2. Myoclonic – sudden jolt and stiffening of muscle tone

3. Atonic – instead of body stiffening, muscles may go limp and head may lean forward. These seizures are usually very short in span (around 15 seconds in length)

4. Absence Seizures (Petit Mal) – causes individuals to blank out or stare into space for short periods of time. Eyelids may flutter from rapid blinking or repetitive smacking of lips and chewing movements may occur

5. Simple Focal Seizures – symptoms can be tasting or smelling something in an odd way or a simple twitch of fingers, arm, or legs

6. Psychogenic Non-Epileptic Seizures (PNES) – pseudo-seizures

What to Do When A Seizure Occurs:

1. Stay calm

2. Move objects out of the way to avoid bodily injury

3. Loosen clothing around the neck

4. Place a pillow or something soft under their head

5. Lay them on their side

6. Remove eye glasses

7. Time the duration of the seizure and observe details to report to doctor afterwards

8. Continue to talk to them in a calming voice

What NOT to Do When A Seizure Occurs:

1. DO NOT put anything in their mouth

2. DO NOT try to hold them down

3. DO NOT try to give mouth to mouth resuscitation

When to Call an Ambulance:

1. If they are injured during the seizure

2. If the seizure lasts longer than 5 minutes

3. If they do not resume normal breathing

4. If the seizure happens in water

5. If there is no known history of seizures

Post-Seizure Activity

1. Stay with them until the seizure ends and they are fully awake and alert

2. Have them sit in a safe place and explain what has happened to them in simple terms

3. Continue to comfort them until they are ready to move about

4. Understand how to comfort children or those around if they have witnessed the seizure (educate them at their level)

5. Ensure plenty of rest, quiet, and relaxation for a few days after the event

6. Contact your doctor for breakthrough seizures and schedule appointment as advised

Authors:

James McFadden, M.Ed.
James R. McFadden, II M.Ed.
Blake Ghavami

~Husbands of Women with Epilepsy~

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