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Functional neurological disorder

Updated: Mar 27, 2021

Seizures have been a part of my life for many years now. It is common for people with traumatic experiences to develop seizures, perhaps stemming from previous abuse or brain injury.

I have lived with epilepsy for 25 years, since my road accident in 1996. Epileptic seizures can be dangerous as they involve electricity. They come in various forms, but I frequently fall and lose consciousness for 5-10 minutes. Often I urinate too, which is apparently common with seizures.

Having come to terms with managing epilepsy, I have more recently been diagnosed with Functional Neurological Disorder (FND), a condition that causes dissociative seizures. I experienced my first FND seizure in 2019 while queueing in Waitrose. I collapsed and had a grand mal seizure, and to my astonishment, I stayed conscious. This was clearly different to an epileptic fit and I was very confused. A few weeks went by and I had another, this time it was much longer and I was shaking my arms and legs and stuttering for 40 minutes at least until an ambulance was called.

A neurologist explained it all to me. I had never heard of FND, but learnt that it can develop as a result of emotional trauma and stress. 23 years after my first trauma, I was amazed how my brain had suddenly reacted this way. Why now? But the brain is a mystery. My eating disorder also seems to contribute, as I started to recognise the pattern that I was very likely to have a seizure in the supermarket or before/after eating a big meal. The Covid pandemic may have hindered my bulimia recovery, but I’m hoping once I can face food without anxiety, my FND seizures will drastically reduce.

As similar as they look, FND and epileptic seizures are very different. I know when an epileptic fit is coming, but FND seizures happen without warning, I stay 100% conscious and I can’t stop talking about my negative experiences and opinions. I’ve joined many online groups and met a few people who also suffer from FND and it’s really good to know that support is out there.

Wherever I am when it happens, people often wonder whether they should call an ambulance. An ambulance is not needed for FND seizures, and often not required for my epileptic seizures. An ambulance is only necessary if I have been unconscious for over 10 minutes. Most often, the seizure passes and I recover by myself; only once have I ever needed CPR. It makes a big difference when these incidents are handled well – shout out to Waitrose who are always very kind and concerned, often call me a few days later to see how I am, and always give free water to help me hydrate.

The worst thing about both FND and epileptic seizures are their unpredictability. Am I going to have a seizure today? I will never know.

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