FORUM


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 epilepsypositivity@outlook.com
 

EPILEPSY POSITIVITY FORUM

A place to connect with and discuss topics which are important to people affected by epilepsy.

SEIZURES

A space for people affected by epilepsy to discuss their experiences with different types of seizures
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1Posts

TREATMENTS

A space for people affected by epilepsy to discuss their experiences with different treatments: AEDs, surgery, etc.
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1Posts

MENTAL HEALTH

A space for people affected by epilepsy to discuss their experiences of the impact of epilepsy on their mental health.
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3Posts

SOCIAL LIFE

A space for people affected by epilepsy to discuss how they manage their social life whilst living with epilepsy.
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2Posts

SCHOOL/EDUCATION

A space for people affected by epilepsy to discuss getting through the education system whilst living with epilepsy.
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1Posts

MEMORY

A space for people affected by epilepsy to discuss experiences and coping with epilepsy related memory problems.
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2Posts
New Posts
  • I have recently been diagnosed with absence seizures. This is all very new to me so wanted to know if anyone else has any experiences with this time of seizures and what treatments etc they were put on.
  • Has anyone got any tips for dealing with memory issues in epilepsy? My medications and seizures are making me quite forgetful and as a young adult I'm finding it fairly hard to cope with. Thank you in advance.
  • 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?❤️