My Cheeky Neurons Story

Our friends have answered five questions about cheeky neurons to share their stories below.

  1. When & how did cheeky neurons become a part of your life?

  2. How do you feel about cheeky neurons (then & now)?

  3. What's the most significant change or decision you have had to make because of cheeky neurons?

  4. What would you say has been the best & worst thing about having cheeky neurons in your life?

  5. What would your key message be to others who discover that cheeky neurons are a part of their life?

If you'd like to share your story then please contact us  - we would love to hear it & share it with our cheeky community.

Amanda, U.K.

When & how did cheeky neurons become a part of your life?

  • Woke up whilst staying at my boyfriend's house, went to say good morning to him and instead I smiled then collapsed and had a grand mal/tonic-clonic seizure. Unfortunately that was followed by multiple seizures which only stopped when I was sedated in hospital. It was 2004 and I was 20 years old. ​

How do you feel about cheeky neurons (then & now)?

  • Back then I was devastated, not helped by it taking over a year to find a medication which not only stopped the seizures but didn't give me side effects which made me feel as bad. Now, I'm fairly ambivalent. I'm fortunate that I've been seizure free for over 5 years controlled by medication. I still make sure everyone I'm likely to spend lots of time with (friends, work colleagues, family) know that I have epilepsy and what to do if I have a seizure. This is both because it keeps me safe and if I do have a seizure it won't be so much of a shock, so it won't worry people as much as if it came out of the blue.​

What's the most significant change or decision you have had to make because of cheeky neurons?

  • Dropping out of university twice! - I still eventually got my degree (13 years after first attempting it). ​

What would you say has been the best & worst thing about having cheeky neurons in your life?

  • Worst: dropping out of university the first time and thus having to accept I wouldn't graduate with the exact degree I wanted.

  • Best: knowing that despite seeing me at my absolute worse in terms of physical and mental health and behaviour, my boyfriend, now husband, stuck around​.

What would your key message be to others who discover that cheeky neurons are a part of their life?

  • Take the time to understand and accept it. It is not a blessing, nor is it a curse. Ask questions, speak to others, do not let anyone brush away your concerns. Once you have accepted it, be open, tell people, invite questions. People only worry about things they don't understand. The majority of people will either know someone with Epilepsy already or will be curious and want to know about it and how it affects you. Share as much as you're comfortable with then move on. Remember you have Epilepsy, you are Not your epilepsy, it is but a small part of who you are.​

B.K. Age 19. Australia 

My message to other people with cheeky neurons is to talk about it, it's not bad!

I don't know what the best thing is about having cheeky neurons...but the worst thing is the seizures

Cheeky Neurons became part of my life at the age of seven years & eleven months. I was playing in the garden with my sister & then stopped & was staring 'into space'. I felt frightened afterwards...

I'm not really sure how I feel about cheeky neurons...

The most significant decision I have to think about because of my cheeky neurons is whether I will ever be able to drive a car

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