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Talking to family about newly diagnosed epilepsy

Fri, 12/07/2018 - 00:50
I'm 25 and have recently been diagnosed with focal aware seizures and secondary generalized seizures. I had my first grandmal seizure back in June, a week after telling my dad that I was thinking about talking to my doctor about getting checked for seizures (due to an increase in episodes of difficulty with speech and understanding speech/ metallic or rotting smells/ high frequency buzzing/jamais vu/ disorientation and memory lapse.) My neuro believes that I have been having these episodes since I was a child. My problem is that I have no idea how to talk or explain to my family about my epilepsy. I have had issues with anxiety, major depression and severe insomnia since I was a very young child (my neuro thinks this is partially due to my seizures) and i've never bothered discussing these seizure symptoms with my family prior; I thought it was just a normal experience because i've had it since early childhood and was told that it was due to my mental health. I'm not sure how to explain to my family after all these years that these little episodes aren't just a symptom of my mental health and that not all seizures look like tonic-clonics. Has anyone else had an experience even vaguely like this? It would be nice to know how others talked to family and friends after being diagnosed as an adult.

Comments

If it's your friends, draw

Submitted by Jazz101 on Mon, 2018-12-10 - 20:19
If it's your friends, draw parallel the friend, for example, who is kinda scared of dogs or some other animal. Then ask; "So when you see them, what do you do? It changes your rhythm, right? Because you either jump to the left or right or just run. Same with electrical activity in the brain. It can responds outside of it's normal pace. Remind them that everyone, Epilepsy or no Epilepsy, everyone's brains runs on what's called "neurological activity". It's just that for individuals with Epilepsy, well, at times it can get thrown off sort of like the friend is as he or she tries to avoid dog or whatever the animal is.Inject humor with your friends if you can. Not humor about Epilepsy but humor about how simple it is to understand Epilepsy. Humor about we don't fear someone because they respond in an unusual way to dogs or some other animal.

Similarly, no reason to fear

Submitted by Jazz101 on Mon, 2018-12-10 - 20:19
Similarly, no reason to fear you because from time to time the brain is simply responding to activity. After all, we don't fear individuals who get cramps in a leg or arm. We just wait for the cramp to ease.

Thank you Amy

Submitted by tsw5 on Tue, 2018-12-11 - 03:02
Thank you Amy

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