Does anyone know of a good epilepsy forum?

Question

Does anyone know of a good epilepsy forum?

Answer 1

I agree that the EF forum should be avoided. You won't find anything resembling epilepsy help there. It only took me 2 weeks of posting there to be forever turned off of ever telling a stranger about the way my seizures made me feel and think.

There are some good yahoo epilepsy groups that you might want to look into.

Answer 2

www.epilepsyforum.org.uk/ and Epilepsy.com are two very good ones

Two you should stay away from are www.epilepsyfoundation.org and www.coping-with-epilepsy.

Coping with epilepsy is a great group of people but the site is full of seizure inducing images, so its dangerous for people who do not have their epilepsy fully under control.

The epilepsy foundation has a lot of really great information about seizures, but the forum only has one moderator and that person treats the forum as if its her own personal playground. If you post something that differs from what she believes than she'll delete your post. People have had their posts deleted because they said they had reflexive seizures to strong smells after the mod said that no one can ever have a smell-induced seizure. That place is nuts and likely will stay that way until they EF decides to stop letting it be one person's power trip