How Do You Describe Your Condition To Someone Who Does Not Have It? | MyEpilepsyTeam

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How Do You Describe Your Condition To Someone Who Does Not Have It?
A MyEpilepsyTeam Member asked a question 💭

When someone asks me, "What does epilepsy feel like?" I describe it as "having an invisible stalker with a TASER" and/or "being controlled by a sadistic puppet master". I also tell people my brain has been "rewired by a drunken technician".

posted October 14, 2017
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A MyEpilepsyTeam Member

In my experiences it’s so hard to describe anything. I can’t even talk for quite some time after. They can’t see what’s going on inside my head and I can't get a word out to tell them. I understand their questions, but can’t connect my brain to speech to be able to answer them. The one time I tried, I heard the jumble of words and shut up once I realized what I heard. Very frustrating on both sides, I’m sure, since they can never really understand the inside of each of our brains.

posted October 16, 2017
A MyEpilepsyTeam Member

I tell people I had a brain fart. sometimes that's how I feel about my brain.

posted October 15, 2017
A MyEpilepsyTeam Member

I usually describe it as driving in a car with a foggy windscreen for day to day life and after a seizure I feel like I've done a full body work with my head feeling like it's going to split open. For a partial seizure I can only describe it being similar to being so drunk you feel like you're having an out of body experience. If someone asks if my meds do anything I say I literally cannot remember the last time I didn't feel tired.

posted October 21, 2017
A MyEpilepsyTeam Member

I say that sometimes the neurons in my brain have too much electricity and need a way to get rid of it(seizures). Kids seem to really understand that.

posted October 14, 2017
A MyEpilepsyTeam Member

Cathryn that is exactly what happens to me. I can hear and know what people are saying just can’t speak back. Get like an intense hot flash and nauseated. About 2-4 every 15-20 days. No meds have worked. On Vimpat now. At my age not sure there is much they can do. Am treated by Mayo Clinic and Georgetown so am in good hands.

posted January 25, 2023

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