Amy Speers is 32 years old and lives in Bangor. For the past seven years, she has been having non-epileptic seizures, which can be difficult to diagnose and sometimes confused with epilepsy. Amy has since created a Facebook page and has written blogs to raise awareness of the condition.
For the past six or seven years, I have been having non-epileptic seizures (NES). These are different to epileptic seizures, which are caused by disrupted electrical activity in the brain.
NES can be divided into two types: organic NES, which have a physical cause, such as a heart problem, or a metabolic imbalance such as diabetes. In these cases, if the underlying causes are identified, they can be treated and the seizures will stop.
The second type of NES is ‘psychogenic seizures’, which are said to be caused by mental or emotional processes.
But healthcare professionals don’t always know what causes them, so some people like to jump to conclusions and say its depression or stress. But these seizures can happen to me even when I'm calm.
Everyone is different and people need to find their trigger points. Mine is pain. I had a seizure in the dentist’s chair getting a tooth removed.
I also took a seizure in the dental pain clinic at Belfast City Hospital and woke up in a brand new theatre - every person’s worst nightmare – and had to be taken to A&E at the Royal Hospital in an ambulance before I was finally allowed home.
Last year, the seizures were that bad they were coming every day. One week, I was in and out of every hospital in Belfast. It was a complete nightmare.
I was told I’d have to wait two years to see neurologist, but was being taken to hospital by ambulance every time I had a seizure and it was crazy. I would be kept in and then sent home, saying there was nothing wrong with me.
One time I found myself in A&E yet again and saw a doctor who was really helpful. I think she helped me to put my foot down and phone the neurology department for an appointment.
I remember ringing them and breaking down in tears because I was desperate and couldn’t take anymore. Within weeks, I got an appointment to see a great neurologist.
He explained about NES, which was really helpful. At last I felt someone was acknowledging that I had a medical problem and it wasn’t all in my head.
I then started doing research into NES, and I was encouraged by paramedics and hospital staff to write blogs. I created a Facebook page called ‘other side of hospital and ambulance staff Ni’, which you can access at http://bit.ly/2i1oRG3
After that I started doing talks. My first was at Pure Gym in Bangor because I’ve had seizures there. But the one I wanted to do most was with the Northern Ireland Ambulance Service, where I was able to talk about how NES affects me and how well the service is doing in trying to deal with it.
Over the years, I’ve got to know quite a few of them. They’re great and always put me at my ease with their jokes – although I’m now finding that the newer ones are getting younger and younger as the years pass…
If you’d like me to give a talk on NES, you can contact me via my Facebook page at http://bit.ly/2i1oRG3
Courtesy of Patient & Client Council