On our Instagram we have been allowing people to share their questions with the Epilepsy Positivity community, to gain answers from people with lived experience.
Building upon this, this page aims to create a more organised space for people affected by epilepsy to discuss their experiences and ask each other questions. We asked Instagram users in the Epilepsy Positivity community the broad topics they would like to be featured and these were the top six: seizures, treatments, mental health, social life, school/education and memory.
Note: the answers posted by users are most likely from experience and guidance should still be sought from professionals when necessary.
If you have any other ideas for forum topics or would like to provide any feedback (always appreciated) then please email us at
Hi! I was diagnosed with epilepsy at 18, i had two grand mal seizures and was then put on 100mg of lamotrigine. Its now two years later and I haven’t had another, which I’m so thankful for. I know its unlikely I will have another seizure but I worry about it a lot and I’m paranoid that I will. The fear from my seizures has stayed with me but I don’t like to talk about it as I know I’m comparison to others I am so lucky. I am sure as time goes on ill feel better about it all but in a way because i am not having seizures i dont feel like i have the right to feel like this. I was wondering if others have similar feelings around this?❤️
I was diagnosed with Juvanile Epilepsy almost four to five years ago and havent had a seziure sense. However, I have come to the assumption that my medications (Keppra and Zarotin) have played a role in being severly fatigued and extremly anxious. I have mentioned this to my *fill in* neurologist. However, nobody seems to want to take action on this. If anyone out there has any suggestions please let me know. Stay Strong. 💋
I have had epilepsy for several years but still find that during times where I am having frequent seizures I struggle with feeling anxious about 'when the next seizure is going to happen.' If anyone has any tips on how to cope and manage this anxiety that would be really appreciated. Thank you. Freya