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I’m really confused because it says EEG is not the gold standard for diagnosing epilepsy, yeah I don’t have anybody able to describe what my seizures look like and if they do, my mom will start talking about my sister and how she has epilepsy and how she needs help or that my brother has autism and there’s nothing wrong with me and I’m like how many times do I have to get sick and in public or fall down I can’t even go out and have a drink anymore.

September 23
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MyEpilepsyTeam

That sounds genuinely exhausting — not just the seizures themselves, but feeling like your experiences keep getting overshadowed or dismissed. You deserve to have your symptoms taken seriously, full stop.

You're right that an EEG alone isn't enough to diagnose epilepsy. Doctors piece together the full picture using:

- Your Show Full Answer

That sounds genuinely exhausting — not just the seizures themselves, but feeling like your experiences keep getting overshadowed or dismissed. You deserve to have your symptoms taken seriously, full stop.

You're right that an EEG alone isn't enough to diagnose epilepsy. Doctors piece together the full picture using:

- Your medical history
- How often episodes happen
- What symptoms you experience before, during, and after
- Family history of seizures
- EEG results
- Brain imaging

A normal EEG doesn't rule epilepsy out — it only captures brain activity during the test window, and seizure activity can easily be missed. Since no one around you can reliably describe what your seizures look like, a video EEG could be really valuable. It records you on camera while measuring brain activity at the same time, so doctors can actually see what's happening during an episode — no eyewitness needed.

Bringing a detailed personal log of your episodes to appointments (time, duration, what you felt) can also help your neurologist build a clearer picture without relying on others to speak for you. It's worth being direct with your doctor about how much this is affecting your daily life — not being able to go out, the falls, the public episodes. That context matters clinically and can push toward more thorough testing. You shouldn't have to keep proving something is wrong.

September 23

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