Just joined, hello everyone πŸ‘πŸ» - Epilepsy Action

Epilepsy Action

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Just joined, hello everyone πŸ‘πŸ»

matthewRiley profile image
β€’3 Replies

Hi, I’m 27 years old and I have had epilepsy for 15 years now, it’s nice to talk to you all about thisπŸ‘πŸ»

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matthewRiley
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Paul72 profile image
Paul72

Welcome Matthew, i'm Paul 48 and my wife has epilepsy which is refractory (unable to be controlled). I hope you are on control but if not we've been on the long treatment road so if you need any support shout up. Hello from Derby UK . Best Wishes

matthewRiley profile image
matthewRileyβ€’ in reply toPaul72

Thank you Paul I am not controlled and I have had a VNS implanted in may last year, happy to be here πŸ‘πŸ»

Paul72 profile image
Paul72β€’ in reply tomatthewRiley

sorry to hear that Matthew, my wife (Lisa) had that back in 2006, having tried all the different settings we had it switched off after 2 years in London. Lisa's epilepsy is very complex, most activity is in the Frontal Lobe but this quickly spreads to her Left Temporal Lobe. I have my fingers crossed that Vagal Nerve Stimulation will help you even if it just reduces seizures somewhat. Lisa is one of the few to have tried DBS (Deep Brain Stimulation) in Liverpool this is helping to reduce night seizures which is a big improvement for us . I hope you have support at home especially if you're uncontrolled, Lisa has seizures most days sadly. Anyway sending positive thoughts to you Matthew.

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