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What Bits Of "advice" Do You Wish People Would Stop Telling You?
A MyEpilepsyTeam Member asked a question 💭
posted October 9, 2016
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A MyEpilepsyTeam Member

I am reading all your posts and hear the same things. It's sad and very hard for us to put up with. I for one, if there is any feeling of my seizure coming on,I have enough sense not to drive, go shopping, dog walking, out for the evening etc.
People act like your a child and need to be reminded and reprimanded about what goes on. OK. So did any of us really ask for Seizures? Not something I wanted to deal with and worry about daily. Right? Put that person or persons in our shoes for a day. I'm sure they would be quiet from there on out.
What we need to be hearing is how you feeling Today? Need anything before we Go? And we our selves take time to focus on us. On keeping calm, maybe a light yoga ( I for one can't do this ) 🙁 music you like. Walking in nature. This is all calming and healing. And ...can't say this enough, plenty of Sleep! Of course. Sites likes this on. I just love. It helps me know I'm not alone & I can talk to others and get help. I always feel better 😊.
OK off my soap box. Sorry about that. And by the way. My ones are driving. And walks, like I said, if I feel bad . I dont go. Geez.

posted October 16, 2016
A MyEpilepsyTeam Member

The worst part of epilepsy for me is not the seizures themselves but what I call the brain farts or missing words. You'll be in the middle of a conversation and come to a screeching halt because you can't you find a word. It is most embarrassing!

posted October 9, 2016
A MyEpilepsyTeam Member

Having a good sense of humor helps! When often told to 'stay safe' by friends, my response is always:
'So what, if I land in a ditch then tough!'

posted November 5, 2016
A MyEpilepsyTeam Member

If you have seizures on a steady base and know what it's from don't let the EMT's take you to the hospital. No matter how much they say you should, there is nothing that they can do for you and If you feel like something is wrong then have a friend or family member take you if needed. They say you really should go, ya so they can get some money

posted October 13, 2016
A MyEpilepsyTeam Member

I tell people all the time I have epilepsy and I know no one really has a clue what it is even a specialist has limited knowledge on the subject. I started studying this condition decades ago and started teaching it about a decade ago. What I have learned I found is so advanced and unknown to even the top specialists in the world. Just today I was teach a specialist, a guy about to graduate from medical school and a nurse that works with a neurologist. The nurse was shocked about how much I knew. I asked all of them to if they could answer a few simple questions. None of them could answer my questions so I answered the questions for them and explained it to them. To me the questions are easy to answer, but not for any of them. After I explained it to them they could understand it but I had to dump it down for them to understand. I have seen this many times. They are confused because they have only textbook knowledge and some of what I am telling them isn't written anywhere. It was only through my experiments and connecting of dots that I was able to turn what started as theory became facts. I've talked to others with epilepsy and they can follow what I'm talking about better then the top specialists in the world.

posted October 11, 2016

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