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How Do You Feel?
A MyEpilepsyTeam Member asked a question 💭

I would like to ask the community what does people think of their own epilepsy, how it affects their life and views of others. Doesn't matter if you are controlled on medication, have had surgery, you're on special diets or are a carer or parent. I would like to hear your experiences.

Thank you.

posted December 10, 2017
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A MyEpilepsyTeam Member

Well my son has epilepsy and it has affected our life in a huge way. People don't really understand. I guess since they don't see it they don't understand how much it affects not only the life of our son who has it but the whole family. We still have not found the right medication. My son has focal cortical dysplasia along with epilepsy.

posted December 10, 2017
A MyEpilepsyTeam Member

I recently switched from Keppra to Vimpat. I feel a lot better. I take a handful of medication every morning though which is really annoying. Vimpat, topomax, abilify, pristiq, vyvanse, gabapentin. I feel like I take too much but my docs dont listen or dont care. But for now I seem stable. I have a new job washing dogs (dog groomer!) and I love it! It is low stress which is good. I have a loving husband and a cat and dog. Life is currently really good

posted December 22, 2017
A MyEpilepsyTeam Member

I am very grateful and lucky that my epilepsy is under control with medication and my seizures were undetectable (deja vu) for a long time with a diagnosis in my 30s. It did affect my life by losing my driving licence which then lost me my job so had to find a new career.
My epilepsy is nowhere near as severe as a lot of you guys which I give you 100% of my respect as I have a constant fear of if/when the next seizure will be in case I have to change my life again.
I was angry for a long time as I didn't ask for my life to be changed and I was very independent but lost that for a long time. I am now back driving but only now and again and feeling more like my old self.
It's a scary thing not being in control of your own life.

posted December 17, 2017
A MyEpilepsyTeam Member

Well, my epilepsy has affected everybody around me.. earlier this year I was In a car accident where we are not possitive but think I most likely had a seizure that morning before the accident which caused the accident, in which a motorcyclist was killed... so right now I’m not driving, and don’t know if I will again.. but I am very very very grateful that I still live with my mom and my sister and they support me so much ....even though it sucks when other family members don’t understand what your going through and judge you... but after my neurologist did an EEG after the accident, he realized that I wasn’t lieing, and I was having absence seizures, even though he says those happen only in children, so he gave me lamictal to try to control them, well from August- October I had 5 absence seizures and the first one or 2 was like really bad, my mom said it literally lasted all day, and I was saying the year was 2016, and I was at Hershey medical center in Pennsylvania, granted that’s where I used to live in Pennsylvania, but the hospital didn’t keep me overnite or do an EEG so now we don’t know what exactly happened, but they sent me home the same way I came in, still In a seizure, so if my mom wasn’t there I could drove out of there and got in another accident 😢😢😢😢 I’m just so tired and worried

posted December 16, 2017
A MyEpilepsyTeam Member

I have epilepsy since when I in primary till now. It do effect me from study and don’t like to hanging around with others. I always like to stay by myself whole day at bus stop when I was kid. I could keep up the study due to too much absents so I drop out when I half way year 10, I start working, I lose job after I have seizure outside of work.

I want to changed my life, so if Nat back to TAFE to finish my year 10 certificate, accountant administration C3, building and construction C4 and diploma. Now I’m married and have a child she’s my angel but I’m so scare she might having it in the future as well. I’m fighting with epilepsy all the time and now I still fighting with it. I’m working full time at work place for almost 2 years now. I have seizure in first day at work and have another one a year after. I usually only take a day for rest after seizure because I want to be same as others I don’t want people to feel epilepsy will effect my work and my boss my workmates all understand that I’m really glad to work with them.

I’m my situation I don’t think it will affect my life or work. Because I want to control my own life.

posted December 14, 2017

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