Dealing with epilepsy · Misconceptions

The Anatomy of an “Almost” Seizure

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There is a specific kind of exhaustion that comes from the “almost” seizure. In the community, we often talk about auras—those strange, sensory warnings that something is coming. Sometimes they lead to a full event, and sometimes they just… linger.

An aura is like seeing a storm on the horizon. You start the mental checklist: Am I near something sharp? Should I sit down? Who is around me? You prepare for the drop, the loss of consciousness, the total surrender of control. But then, the storm passes without breaking. The “static” in your head clears, the nausea fades, and you are left standing there, heart racing, waiting for a blow that never landed.

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Career counseling · Dealing with epilepsy

Career Counseling: The Disclosure Dilemma

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One of the most frequent questions I grapple with is: When do I tell them? In a job interview, you are there to sell your best self. You highlight your skills, your reliability, and your drive. You don’t exactly want to lead with, “By the way, my brain occasionally glitches and I might need to lie on the floor for twenty minutes.”

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Dealing with epilepsy · Misconceptions · Not too personal

The Lifestyle Trap: It’s Not Just “Stress”

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If I had a Euro for every time someone suggested a “lifestyle change” to cure my epilepsy, I could probably fund my own research lab. We’ve all heard it: “Have you tried yoga?” “Maybe you should quit gluten.” “Is it just because you’re stressed?”

While sleep and stress management are vital tools for any chronic condition, there is a dangerous misconception that epilepsy is a failure of discipline. It frames a neurological disorder as a lack of “wellness.” When people offer these tips, they are often trying to be helpful, but they are also trying to make sense of something scary. If it’s just about “stress,” then it’s something they can control. If it’s a random electrical storm in the brain, that’s much more unsettling.

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Dealing with epilepsy · Misconceptions

Myths debunked #3: “If you had a seizure, I would know what to do”

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Most people think they’d handle a seizure well.

They wouldn’t. Or not automatically.

Confidence is not preparation

People assume it’s common sense. It’s not.

Otherwise, fewer people would:

  • panic
  • crowd
  • give random instructions
  • try things they saw once and never questioned

Good intentions don’t equal useful actions.

The classic mistake

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Not too personal · Dealing with epilepsy

The “Epilepsy Tax” on Time

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Most people measure their productivity in hours or task lists. For those of us with epilepsy, we have to account for a hidden “tax” on our time that no one else sees. It isn’t just the few minutes a seizure might last; it’s the hours, or sometimes days, that follow.

When a seizure ends, the world expects you to “reset” because you look like yourself again. But internally, the brain is rebooting like an old computer after a crash. There is the post-ictal fog where words feel just out of reach, the crushing fatigue that no amount of coffee can fix, and the mental “re-calibration” required to remember what you were doing before the lights went out.

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