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Talking to family about newly diagnosed epilepsy
Fri, 12/07/2018 - 00:50I'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.
This sounds similar to my
Submitted by Kefoster1231 on Thu, 2018-12-20 - 03:57
This sounds similar to my story. I have had epilepsy since i was 7. I would lose consciousness often or have difficulty functioning temporarily. It has always been a major struggle. With each of my 3 children my epilepsy got worse and though it was brought up in passing no one diagnosed nor treated me for it. As a kid I'd fall over and they said i locked my knees, if I was running I wasnt breathing properly or was sick or so on and so forth. I moved from Cali to Texas at 20 and doctors started asking me more about it, then at 22 my family moved to San Antonio where I received the best care of my life had was diagnosed. I have LGS and Temporal Focal Epilepsy as well. My medicine was helped being paid for my N.O.R.D. and I started doing better. I had 9 grandmal seizures then was rushed to the er and admitted... I lost my job with trouble youth because i became a liability. I had to ask for help as at this point I had 3 little ones 2 in diapers at home. I told my family. My mom was floored and to this day doesnt forgive herself for taking the easy diagnoses repeatedly. We got closer these past 3 years and I'm 26 and still seize often but gained hope. I am divorced because of it in a way, some people dont cope well and some never understand the toll it can take and the recovery. The more you talk to others who love you and support you the more confidence you'll get.