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

Jun 18, 2018

Anxiety related to 'seizure anticipation'


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.



Jun 18, 2018

Hello Freya,


I really related to this post. For a long time I felt the same and still sometimes do. Something that has helped me is planning my situations in terms of what I could do if I have seizure or feel one coming on (if you have auras). For example in a restaurant to make me feel more comfortable I will sit near the toilets so if I feel one is about to happen I can get myself to a more quiet area (I have partial seizures). Another thing that has helped is being more open about my seizures so people know what to do if I have one. The main thing though (I know this can be hard) is try not to let that anxiety stop you from doing something that YOU want to do. Perhaps try getting professional support or find some alternative help online as well in terms of managing.


I hope this helped.


-Isla G

Jun 20, 2018

Hello again Freya!


Sorry to hear that you are experiencing this but from speaking to other people it seems to be something that quite a few people with epilepsy experience. As Isla says planning situations and talking to others can help. I also found some self-help information in terms of mood on the epilepsysociety website is helpful! Know that we are all here and going through this together!

Jun 24, 2018

I'm struggling with a similar problem! I think mine is mainly because I am scared of how people will rect so discussing it with people you spend time with may help. Also giving yourself to process what is happening may help a bit.

New Posts
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