I'm a carer to my wife who has difficult to control Epilepsy

[Paul72]

My wife has had epilepsy since the age of 7.Lisa's epilepsy has been difficult to manage especially over more recent years.We've been to a few hospitals from our Local City to The National Hospital For Neurology & Neurosurgery in London & the Epilepsy Society at Chalfont St.Peter.

We have tried most drugs and last week she started the more recent one Perampanel.Lisa had limited surgery to her left temporal lobe (1991) and tried the VNS in 2005 (vagal nerve stimulator) without much luck.Approx 2 years ago we got refferred to The Walton Centre in Liverpool where we're looking into DBS (deep brain stimulation).Lisa has complex partials most days and these cluster so she requires 24hr care.We have a care package in place by social services which has been brilliant, this has enabled me to continue working.

The picture shows Lisa having depth & surface grid recording being done at Liverpool in the summer.The data was recorded across 8 days and to our surprise her epilepsy (seizure activity) is starting in the frontal lobe not her left temporal lobe as first thought.This new discovery is important for DBS however now she requires further MRI scans first, so a long way to go yet.

Paul

[epilepsysociety1]

Hi Paul72,

Thanks for sharing your and Lisa's story - it shows how different people's experiences with epilepsy can be. Good to hear about Lisa's care package and the difference it makes for you. Thanks for writing as a partner of someone with epilepsy - everyone can be affected in the family in different ways, can't they?

[Paul72]

Thanks, they certainly can.... but i'm lucky to have such a supportive epilepsy nurse team in Liverpool.We also had excellent support at The National Society for Epilepsy for many years with likes of Annette Russell and many others.It's also very important to have social services support at these epilepsy centres, as without these people we wouldn't have had a care package set up.

[jake2]

Hi Paul,

I hope Lisa's pacemaker yields positive results. Best of luck!!!

Jake

[Paul72]

Thanks Jake, deep brain stimulation is fairly new to our part of the world although it is being used for people with parkinsons disease with some very good results.

Paul