Epilepsy support in Oxfordshire

[Martin1980]

Good afternoon all,

My wife was diagnosed with epilepsy after a tonic clonic seizure that came out of nowhere.

Nearly two years on and She is still struggling to come to terms with her diagnosis and although she knows her condition does not define her, it is affecting her work and her life.

Some of her behaviour has been destructive but can anyone out there please advise if there are any support groups in the Oxfordshire or surrounding areas please.

After her diagnosis we left the hospital with a leaflet and no further support or offer of help and guidance. Any advice, tips or support that can be offered would be very welcome.

We don't know what to do or who we should contact.

Thanks

Martin

[Hidden]

Epilepsy is a hard condition to deal with--and although I've done a lot of research over the years, my feeling is that the experts still know very little about what causes it or how to control the symptoms (much less control the seizures.)

I would recommend trying to find a neurologist who specializes in seizures (in the US they're called epileptologists.)

Other than that, I believe finding a group like this one--and other groups where you can actually meet other people with epilepsy--can be very helpful.

Best of luck!

[AmyBadd]

You should try to get an appointment with a neurologist (if you don't already have one). Your wife is perfectly entitled to this. You should discuss with them the destructive behaviour, which may be symtomatic of the kind of epilepsy, or a side effect of a medication your wife is taking. You can also use this opportunity to ask your neurologist whether there is a support group and/or an epilepsy nurse in the local area. They should know. An epilepsy nurse is also a great person to talk to if you have concerns and I know a lot of people have found them easier to talk to than their neurologists (you know how some doctors do not have great people skills?!).

Of course, this group is always here, and I would recommend reading back through the archives as there will be posts relevant to your wife. You can ask us more specific questions as well, if you have any.

All the best,

Amy

[Hidden]

As you know by replying to my last post I have similar problems as your wife so I wish her well.I was just thinking maybe like me she should try coming on here or other similar forums as I guess it might help or at least I am hoping so which is why I have come on here.I don't have any other advice except what Amy says which is reading through past posts on here which I intend to do when I have the time.

Marky