Trusting being seizure free...

[catmum2020]

Hey everyone - first time on the forum... just wanted to know other people's experiences after having a seizure after being one year seizure free. It happened to me the other day and broke my heart. Because they say you can drive and stuff after a year... does anyone else worry that you can never trust it?

[EpilepsyAction1 Partner Epilepsy Action]

Hi

Having another seizure, after being seizure free for so long, can be very difficult.

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our virtual support groups epilepsy.org.uk/virtual-groups. We have our forum4e online community forum.epilepsy.org.uk/, and we are on facebook facebook.com/epilepsyaction and twitter twitter.com/epilepsyaction.

We also have lots of information and advice about living with epilepsy on our website: epilepsy.org.uk

Finally, please feel free to contact our helpline team. You can either email [e-mail] or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team

[GillyA]

I’m not sure I ever truly trust it. Just demonstrated by having one after 7 years. I’ve organised life so I can cope without driving (and stopped completely around 10 years ago. I found that having to stop each time was the hardest practical thing, and cycling through driving or not harder than just not driving. I was also genuinely worried about killing or injuring someone.

I try to put the epilepsy in a box so I allow myself to feel ill or ‘disabled’ when I have a seizure. The rest of the time I look at myself as fit, healthy and ‘normal’. This may make the period immediately afterwards harder, but overall allows me to carry on with a tough, responsible job, which in the non Covid world includes a lot of time overseas for work.

I liked your suggestion of steer into the skid.