Give me positive stories!

[Beckbockk]

I'm early in my diagnosis and not found appropriate medication yet to help me out. Tell me your success stories and aid my feelings of hopelessness, please!

[GillyA]

Good morning, I was around 30 when I was diagnosed. I had a seizure at Waterloo Station in the middle of rush hour and woke up in hospital with no idea what had happened. I was devastated. No history in the family and no previous significant issues for me. I’m fortunate that generally my epilepsy is well controlled, although seizures can be very bad when they happen.

I took the decision to carry on with my life as much as possible and not let the epilepsy limit it. I try to box it in a corner of my brain and live my life as the fit healthy person I am 95% of the time. I’ve had a good employer and understanding bosses. I’ve worked in several different countries, currently in West Africa in a demanding, but fantastic job. I have a great neurologist in London who has given me long term care.

I certainly know my experience isn’t everyone’s and there have been some very difficult times on the way. Each time I have a seizure I struggle with depression and recovery, but despite this I took the right choice for me. So I think my answer is I focus on what I can do rather than what I can’t and take pleasure in that; and don’t regret the limitations (eg not driving, some countries I can’t work in) too much.

[Anonite]

Hi  Beckbockk ,

My son was diagnosed with epilepsy the 24th of March 2022 so a year this week. Also this week on the 23rd he was 6 months seizure free. It is tough no doubt about it his first medication wasn’t the one for him but thankfully the second seems to be working a lot better. For the majority the first medication works but if not try not to lose hope(Easier said than done). In the beginning I searched the internet non-stop try not to do this only made my anxiety worse tbh. You are doing the right thing asking for positive stories and hopefully more people will share their stories to give hope in a very hard time. Wishing you all the best x

[EpilepsyAction1 Partner Epilepsy Action]

Hi Beckbockk

It’s good to see that people have shared their positive experiences with you.

Around half of all people with epilepsy find that their seizures stop with the first medicine they try. But some people need to try a few medicines before they find one that works well for them.

If you haven’t seen it already, we have information for the newly diagnosed on our website epilepsy.org.uk/info/newly-...

You may like to take a look at some of the epilepsy stories people with epilepsy have shared with us epilepsy.org.uk/epilepsy-st...

If you’d like to talk anything through please do contact our helpline team on freephone helpline 0808 800 5050.

Our helpline is open Monday to Friday 8.30am until 5.00pm, and Saturday 10.00am until 4.00pm.

Regards

Julie

Helpline Team

[paddie2]

Understandibly you do Becs but dont let it bring you down ..my friends daufgter has just been diagnosed too but is so positive so is her mum ..dont let this take over your thinking ..my daughter was driving for years , had 2 kids normal birth ,working in sainsburys cafe ..good luck Hun xxx