FND Awareness Day UK | 25th March 2022 | Imogen’s Story

I’ve suffered with FND seizures since 2019. I already suffer epilepsy and at first thought I was having a new kind of epileptic seizure. I was very confused at how I was still conscious and my breathing was so out of control.

When having an FND seizure, I’ll fall to the ground and shake so much that I often bang my head. They tend to last 5 minutes, but sometimes longer. I just lie on the ground and wait for the shaking to stop which can get very upsetting. As with epilepsy, I usually don’t need medical attention but people often panic and call an ambulance when it’s not necessary.

FND seizures often do not look like ‘normal’ seizures. I find it especially embarrassing when people think I’m lying – I’ve had a paramedic tell me to stop shaking and breathing heavily, as if I had any control of it!

I am told my FND seizures are associated with post-traumatic stress and my eating disorder.

On average, I have about 3 FND seizures a week, but always have more when I’m stressed. Due to my eating disorder, nearly every visit to the supermarket ends with a seizure. I’m starting to use mindfulness to help; if I feel stressed or get a seizure warning, I’ll breathe deeply and listen to the sound of nature, and sometimes the shaking will stop.

When I tell people I have FND, I’m always asked ‘what’s that?’. I must admit, I’d never heard of it before being diagnosed. I need society to understand and know about FND. When I’m accused of acting a seizure and left feeling ashamed, I know It’s important to raise awareness of this condition which is so unheard of.

The worst thing about FND seizures is their unpredictability. Will I have one today? I never know.

Written by Imogen, Bath