Living with Epilepsy: My Story, My Truth

Epilepsy is something most people don’t really know much about. For me, it’s just part of who I am—part of my head, part of what’s happening inside my brain. Sometimes something triggers it off, and I’ve learned over time that epilepsy can come from many different causes.

Because I’ve had a brain injury, many assume that’s the only reason I developed epilepsy. But epilepsy doesn’t have just one cause. It can be genetic, it can arise from brain tumors, infections, complications, or even without a clear reason at all. And it’s not one fixed condition either—it has many types and patterns, which makes it complicated and often misunderstood.

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Types of Epilepsy and Seizures

There are four main classifications of epilepsy:

• Focal epilepsy: Seizures begin in one specific area or side of the brain.

• Generalized epilepsy: Seizures involve widespread areas of the brain from the start.

• Combined (Focal and Generalized) epilepsy: A mix of both focal and generalized seizures.

• Unknown onset epilepsy: When it’s unclear if seizures are localized or widespread.

No matter the type, seizures are the common thread. And even seizures themselves aren’t all the same. For example:

• Absence seizures: Brief, sudden lapses in awareness (“staring spells”).

• Tonic-clonic seizures: Stiffening of the body (tonic phase) followed by jerking movements (clonic phase).

• Focal aware seizures: A person is fully awake and aware during the seizure.

• Focal impaired awareness seizures: Awareness is altered—confusion or disorientation occurs.

Personally, I live with myoclonic epilepsy, which involves sudden, brief, involuntary muscle jerks (myoclonus). I also experience tonic-clonic seizures. These can be especially dangerous because they involve stiffening, loss of consciousness, and convulsions—making medication vital for prevention.

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Diagnosis and Medication

Epilepsy is usually diagnosed through imaging and brain activity tests—like an MRI to study the brain’s structure and an EEG to measure its electrical activity.

In my case, I take a combination of medications:

• Brivazen (Briviact): The toughest for me, as it caused behavioral changes like aggression, irritation, and agitation.

• Lacoset (Lacosamide): Helps with seizures but comes with side effects like headaches, dizziness, blurred or double vision, tremors, and mood disturbances.

• Fycompa (Perampanel): Controls seizures but often makes me dizzy, drowsy, clumsy, or less alert.

The irony of epilepsy treatment is this: the side effects of the medications can sometimes feel as overwhelming as the seizures themselves. But they remain necessary because keeping seizures under control is the top priority.

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Beyond Medication: Living with Epilepsy

Epilepsy is so much more than seizures or side effects. It’s the in-between moments—the lifestyle adjustments, the patience it demands, the way it tests your stability of mind.

I’ve lived with epilepsy for 30 years, and it has shaped my life with fear, uncertainty, stigma, but also resilience and lessons I continue to learn every day.

One of the biggest reasons stigma exists is simple: a lack of awareness. People don’t understand what epilepsy really is, or how diverse and complicated it can be. That’s why sharing our experiences matters—every story counts.

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A Ray of Hope

Living with epilepsy isn’t easy. But then again, who ever said life was easy? It’s a different path—one that calls for strength, compassion, and hope. Can I every be seizure free or will this just be a long -term chronic problem?

I once wrote a book about my head injury- Touching Void... Surviving a Car Accident; but I realized that still wasn’t enough for people to truly grasp what a brain injury—and epilepsy—can do to a life. So here I am, taking a first step into writing more openly through blog posts.

Through this, I want to:

• Raise awareness about seizures and epilepsy.

• Dispel myths and misconceptions.

• Share my lived experiences.

• Leave people more informed than before they came.

Because while epilepsy may be part of me, it does not define me.

This is my first step.