November is Epilepsy Awareness month. When it personally affected my family, it turned my world upside down, rearranged priorities, and established the fragility between life and death. A condition without a specific cause or cure, it affects over 50 million people worldwide. One in 26 Americans will be diagnosed. Treatment is primarily with medications. For 30% the symptoms are uncontrolled, leading to brain damage or death. Epilepsy costs an annual 15.5 billion in medical expenses and lost earnings, yet remains underfunded by the National Institute of Health; receiving less than 1% of monies for research.
What is it? Changes in the brain’s electrical balance that cause seizures that alter awareness, physical, movements, consciousness, or actions. Anyone can have seizures. A person with epilepsy has a lower threshold; having two or more unprovoked seizures greater than 24 hours apart. It can develop at any age; is considered to be lifelong; and is not contagious.
Causes: For 2/3, the cause is unknown. Common origins include genetics, traumatic brain injury, stroke, Alzheimer’s, fevers, brain malformations, autism, and maternal drug use. A neurologist or epiletologist is required for treatment.
What’s it like? A person may lose full or partial consciousness. Other symptoms include blank stares, uncontrolled jerking movements, sensitivity to lights, loss of bladder or bowel control, loss of balance, inability to speak, eye rolling, tongue biting, drooling, headaches, confusion, and loss of memory. Symptoms and types of seizures vary and are inconsistent.
When my family member shared her story of a partial seizure, she said it felt like being trapped in a tunnel of flashing lights; wanting to call out for help, but having no voice. Her body vibrated with each flash of light, tingling with pain. As quickly as it came, it was gone. Afterward, she slept to awaken disoriented with a migraine.
Common Triggers include poor sleep, temperature changes, flashing lights, medication changes, poor eating, changes in menstrual cycles, stress, and fluorescent lights.
First Aid for Seizures: When a person is having a seizure, it is scary for you and the person. Keep them safe. Protect their head. DO NOT put anything in their mouth. If they lose consciousness, turn them on their side to keep their airway open. Loosen collar and clothing. Speak calmly and reassuringly. Stay with the person until they are fully conscious. Seek medical help if necessary. Allow for rest afterwards. Note the symptoms and length of time for seizure.
Life with Epilepsy: It is frustrating coping with epilepsy. Depression, isolation, fear, and loneliness are common emotional challenges. For individuals and families, normalization and communication are fundamental. Take medications as prescribed. Exercise, eat right, get enough sleep, watch stress levels, and be aware of triggers. Create a seizure free environment. Keep a journal of seizures and symptoms. Encourage them to see beyond the diagnosis and discover their own inner gifts as many famous others have (i.e. Elton John, Prince, Michelangelo, Theodore Roosevelt, and Olympic Runner, Florence Griffith Joyner (Flo Jo)). Seek help. Ask questions. For more information, www.epilepsy.com.
– is a Wellness Educator and author; certified Arthritis Foundation exercise and self-help trainer with nearly two decades of experience as a geriatric and stress management specialist. She has a Master’s of Science in Organizational Leadership, Geneva College; a Master’s in Holistic Nutrition from Clayton College of Natural Health; and a bachelor’s degree in Therapeutic Recreation from Slippery Rock University.