Anchored in Faith: A Journey Through Epilepsy and Hope

Understanding Epilepsy: Causes, Types, and Symptoms

Epilepsy is a debilitating neurological disorder characterized by repeated seizures of various types and severity. It affects millions of people worldwide and can significantly impact daily life. Understanding the causes, types of seizures, and symptoms can help in managing and supporting individuals with epilepsy.

What Causes Epilepsy?

Epilepsy and seizures result from abnormal circuit activity in the brain. Several factors can contribute to the development of epilepsy, including:

Genetics: Some forms of epilepsy run in families, indicating a hereditary component.
Brain Structure Abnormalities: Congenital malformations or damage to the brain’s structure can lead to epilepsy.
Metabolism Changes: Metabolic disorders affecting brain function may trigger seizures.
Immune System Abnormalities: Autoimmune disorders can lead to epilepsy in some cases.
Trauma: Head injuries or physical trauma to the brain can be a significant cause.
Stroke: Interruptions in blood flow to the brain can result in seizures.
Tumors: Brain tumors may trigger epileptic activity.
Infectious Disease: Conditions such as meningitis, encephalitis, or neurocysticercosis can cause epilepsy.
Unknown Causes: In nearly 50% of epilepsy cases, the exact cause remains unidentified (idiopathic epilepsy).

What is a Seizure?

Seizures occur when abnormal electrical signals from the brain change the way the body functions. They can manifest in various ways, from convulsions and muscle spasms to strange sensations, emotions, and even unconsciousness. While some seizures are triggered by external factors such as high fever, infections, or metabolic imbalances, recurring seizures are often indicative of epilepsy.

Types of Seizures

Seizures can be broadly categorized into two main types: generalized and focal seizures.

Generalized Seizures

Generalized seizures affect both sides of the brain and often result in loss of consciousness and significant physical symptoms. The types of generalized seizures include:

Absence Seizures (Petit Mal): Brief, sudden lapses in attention, often mistaken for daydreaming.
Atonic Seizures: Sudden loss of muscle strength, leading to falls.
Tonic Seizures: Stiffening of muscles, often leading to falls or immobility.
Clonic Seizures: Repeated jerking movements.
Myoclonic Seizures: Sudden, brief muscle twitches or jerks.
Tonic-Clonic Seizures (Grand Mal): A combination of stiffening and jerking, often accompanied by loss of consciousness.

Focal Seizures

Focal seizures originate in a specific area of the brain and affect approximately 60% of people with epilepsy. They were previously known as partial seizures and can sometimes evolve into generalized seizures. The types of focal seizures include:

Motor Focal Seizures: Involuntary movements, such as twitching or jerking.
Sensory Focal Seizures: Changes in sensory perception, such as tingling, flashing lights, or strange smells.
Autonomic Focal Seizures: Affect autonomic functions like heart rate, sweating, or stomach sensations.
Psychological Focal Seizures: Affect emotions, memory, or cognition, sometimes causing hallucinations or fear.

How Are Different Symptoms during a Seizure Described?

Many different symptoms happen during a seizure. This new classification separates them simply into groups that involve movement.

For generalized onset seizures:

Motor symptoms may include sustained rhythmical jerking movements (clonic), muscles becoming weak or limp (atonic), muscles becoming tense or rigid (tonic), brief muscle twitching (myoclonus), or epileptic spasms (body flexes and extends repeatedly).
Non-motor symptoms are usually called absence seizures. These can be typical or atypical absence seizures (staring spells). Absence seizures can also have brief twitches (myoclonus) that can affect a specific part of the body or just the eyelids.

For focal onset seizures:

Motor symptoms may also include jerking (clonic), muscles becoming limp or weak (atonic), tense or rigid muscles (tonic), brief muscle twitching (myoclonus), or epileptic spasms. There may also be automatisms or repeated automatic movements, like clapping or rubbing of hands, lip smacking or chewing, or running.
Non-motor symptoms: Examples of symptoms that don’t affect movement could be changes in sensation, emotions, thinking or cognition, autonomic functions (such as gastrointestinal sensations, waves of heat or cold, goosebumps, heart racing, etc.), or lack of movement (called behavior arrest).

For unknown onset seizures:

Motor seizures are described as either tonic-clonic or epileptic spasms.
Non-motor seizures usually include a behavior arrest. This means that movement stops – the person may just stare and not make any other movements.

What to Do When Someone Has a Seizure

Stay with the person and start timing the seizure. Talk calmly and reassuringly to them.
Check for medical ID and administer rescue medication if prescribed.
Keep the person safe by guiding them away from harmful objects and encouraging others to give them space.
Turn the person onto their side to keep airways clear.
Do not put objects in their mouth or restrain them.
Stay with them until they are fully alert.

When to Call for Emergency Help

Seizure lasts longer than 5 minutes
Repeated seizures
Difficulty breathing
Seizure occurs in water
Person is injured, pregnant, or sick
Person does not return to their usual state
First-time seizure
The person asks for medical help

Epilepsy is a complex neurological disorder with various causes and seizure types. Understanding its symptoms and phases helps in better diagnosis and treatment. Consulting a medical professional for proper evaluation ensures individuals receive the best possible care and management option

A Personal Journey with Epilepsy: Adelaide’s Story

Just before COVID-19 impacted the world, we began noticing significant changes in our oldest daughter, Adelaide. As the pandemic unfolded, bringing lockdowns and the closure of my workplace, we navigated an uncertain medical landscape with limited access to healthcare. During this time, Adelaide suffered a concussion, leaving us questioning whether her symptoms were a result of the injury or something more.

For a year, we explored possibilities like ADHD and tics. But no—her eyes kept fluttering. She struggled to follow multi-step instructions, had difficulty in school, and found focus and memory increasingly challenging. She got hurt often, despite not being a clumsy child. Changes were difficult. Her thoughts and sentences sometimes became fragmented.

Then, one day, I received a call that Adelaide wasn’t responding to her friend calling her name. Thankfully, her friend alerted the teacher, and I rushed to pick her up and take her to the hospital. After clearing all her neurological exams, the doctor ordered an EEG test. Within 24 hours, we received a call from a pediatrician requesting an urgent appointment the next day.

He told us Adelaide had a form of absence epilepsy.

She was experiencing hundreds of seizures every day.

The Search for Treatment

Immediately, she was put on medication, and at first, we saw great improvement. But within weeks, the effects began to fade. Every two weeks, we increased the dosage, only to see the same pattern—the medication would lose its effectiveness.

Finally, we saw a pediatric neurologist who diagnosed her with a rare type of epilepsy called Eyelid Myoclonias: Absence Epilepsy. He informed us that this was not juvenile epilepsy—this would be lifelong.

Those words still bring me to tears.

The Medication Struggle

That spring, we began the exhausting cycle of trial and error with medications. Each adjustment brought side effects and pain, leaving our little girl in distress. Adelaide, once a vibrant and active child, would fold herself onto my lap, exhausted, while other kids played around her.

She was eventually labeled medication-resistant, meaning no medication fully worked. One medication, often regarded as the “gold standard” for children with epilepsy, turned our sweet girl into someone unrecognizable. She became angry, depressed, and withdrawn. We called it the “devil meds” because it made her feel hopeless—she wanted to die.

We had to remove her from that medication quickly—much faster than usual. The withdrawal was brutal. Nausea, dizziness, mood swings, pain, hot flashes, and cold chills consumed her. Christmas of 2023 was unbearable. Seven weeks of trying to adjust to the medication were followed by an emergency withdrawal in just one to two weeks.

The Emotional Toll

Watching your child suffer is one of the hardest things.

Things that are hard living with epilepsy:

Memory
Sleepovers, overnight outings, going to camp, or being away from people who understand and know what to look for.
Having to explain to parents that playdates require you to know seizure first aid.
Late nights and lack of routine.
Missed sleep or breaking bedtime routine.
Sleep is a very large trigger for seizures.
Fatigue
Focus
Siblings having to help keep an eye on you as you play.
Siblings watching their best friend and sister struggle.
Having other kids tell your daughter and her sister how people can die in their sleep from epilepsy.
Medication changes
Medication side effects
Taking medication daily
Taking any extra medication for other illness
You ideally should not be alone in a bathtub.
You should not swim alone.
You should not be around fire alone.
You should not be around heights alone.

It’s one thing to endure suffering yourself, but watching someone so young, whom you love, experience pain beyond their control is a different kind of heartbreak. For the past 2 years we have been in and out of doctor’s offices, constantly adjusting medications, hoping something will work and stick.

We even tried to train a service dog for Adelaide, only to have to rehome it within three days due to fear within our home. It was another crushing loss.

Our daughter is chronically ill. She will be for life- at least that is what they think. And nothing seems to fully keep her safe.

On good days, she has little to no seizures. On light days, she has some. On bad days, she can have many. Even a few seizures disrupt her memory, speech, and thoughts. She has fallen down stairs, walked into walls and doors, and suffered a concussion from falling.

She cannot be left alone in the bathtub or around water, fire, or heights.

Wrestling with Faith

Life feels overwhelming. How will she cope? How will she gain independence? How will she pursue her dreams?

Why would God allow this? Why would God ask this of us?

Hard things rarely make sense.

I don’t believe God wants Adelaide to have epilepsy—He could heal her. But He has allowed it.

So where does that leave me with God?

I could shut down. I could let depression and anxiety consume me. But that would drown everyone around me.

I could become bitter. But bitterness poisons the soul and only adds to suffering.

I could be angry. And sometimes I am. I cry out, Why her? Why us? Why, God, why? But anger gives me no answers, and the next day still comes.

All these emotions drain my strength more than I can afford.

So, I take my tiny bit of faith and face each day as it comes. Faith is believing in what I cannot see. I choose to trust that God will carry me, carry Adelaide, and carry our family.

My prayers feel unanswered many times. My strength is weak. I am tired. So tired.

But I have to keep going.

Because if I stop, Adelaide drowns.

Her life preserver is attached to mine. She is relying on me to move forward. I don’t have to pretend to be okay with this—I’m not. But I do have to teach her how to cope. It is our responsibility as her parents to show her how to navigate this, and to trust that God can use even this for good.

Some days, it feels like God doesn’t make a difference in our lives. But I press on, believing that healing, redemption, and restoration will come—even if it’s on the other side of heaven.

So if healing doesn’t come in this life… then what?

Choosing to Trust

I live with the tiny seed of faith I have left.

If I don’t trust that God is real, good, and able to restore, then what hope is there? If not God, then who? If not God, then what?

Faith is walking through daily hardship with the belief that there is a reason.

How has my faith been affected by our struggles?

I feel weak. My faith is threadbare. It is the size of a mustard seed..

This is our reality. This is our journey. It is messy, exhausting, and painful. But somehow, we keep moving forward—one step, one prayer, one small act of faith at a time.

For those who have epilepsy, a loved one with it, or a friend walking alongside someone who does, may these words inspire you to keep going. In the face of hardship, may you remember that you are not alone in the struggle. Even on the toughest days, even with a tiny bit of faith, that seed can make all the difference. Hold onto hope, and know that every step forward—no matter how small—is a victory. You are stronger than you think, and God sees every one of your struggles. Keep pressing on. You are never alone.