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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Who Have You Told (besides Family Members) That You Have Epilepsy Or Seizure Disorder? How Did They React?

A MyEpilepsyTeam Member asked a question 💭
Lakeville, MA

When I tell someone new that I have epilepsy and very unreliable memory recall (as a result of the cumulative side effects of all of the anticonvulsants and some other meds), I try to educate them about not only the range of seizures that I have but also how to react and what to do (and not to do) when witnessing someone having a seizure.

May 31, 2017
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A MyEpilepsyTeam Member

I tell people I plan on being around a lot. Many years ago when I was in a home for Epileptics I left my geographical location to do things in Montreal. There I told them of my Epilepsy but not about the.home where I lived, which was more like an institution for Epileptics. In my area they lost total interest in me when they learned I was in that home. But the he no longer is. So it is easy to talk about my Epilepsy with choice individuals here now if we will be investing time in each other.

May 16, 2020
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Epilepsy is a seizure disorder, but not all seizure disorders are caused by epilepsy. Seizure disorders can be caused by head injuries (car accident for example), brain tumor, drug overdose, and old age. The result of all is seizure disorder (once you have your second seizure), but epilepsy is not the only way to get a seizure disorder.

October 27, 2017
A MyEpilepsyTeam Member

My Doc said do not read too much on Google as it gives out doom n Gloom lol xxxx

June 17, 2017
A MyEpilepsyTeam Member

Epilepsy is the same as a seizure disorder. Epilepsy is defined as having two or more unprovoked seizures. Less than that is just having a seizure. I also have epilepsy as the result of a car accident, and have done quite a bit of research on it. (The definition I just gave you is from google!!)

June 11, 2017
A MyEpilepsyTeam Member

I've randomly told people over the years. The reactions I've gotten are mixed...mostly though, I find that people aren't aware of what epilepsy is, so I find myself explaining that it is a seizure disorder. The conversations have rarely gone further than that :(

June 5, 2017

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