By Abi Simpson
‘I just try and stay strong through it and not let it bother me. It can quite easily be a condition which affects most of your life’
The misdiagnosis of epilepsy is a problem that is all too common. Abi Simpson discovers what effect this is having on sufferers and what can be done to improve the system
Walking into the waiting room of the neurology department, that clean, chemical, hospital-smell hanging in the air, you can’t help but be overwhelmed. Having waited so long for the appointment, there’s a sense of relief at finally being here, followed closely behind by nervousness over what you’re going to be told.
An appointment which has already been so long in the making is a nerve racking experience in itself, but one that could be made even more terrifying by being misdiagnosed and not getting the treatment you need as soon as possible.
A shocking number of people are misdiagnosed with epilepsy each year, most actually having a mental condition called Non-Epileptic Attack Disorder, or NEAD for short. Research by the Epilepsy Society shows that 1 in 5 people diagnosed with epilepsy actually suffers with NEAD, with some people being prescribed antiepileptic medication for months and sometimes years before getting a correct diagnosis.
Sue Hope, aged 48 from Washington Tyne and Wear, is one of them. Hope spent 15 years on epileptic medication, suffering from all sorts of side effects only to find out her seizures were actually non-epileptic and that the medication had been doing nothing to help.
She said: “The meds made me like a psycho, I put weight on and my hair used to fall out, handfuls when I washed it.”
NEAD is not a widely known disease; this coupled with its similarity to epilepsy may explain the high rates of misdiagnosis. Non-epileptic attacks can look very similar to epileptic seizures, especially to non-experts, but also have other symptoms such as: palpitations, hyperventilation, and loss of awareness and control over the body.
There are two main types of non-epileptic attacks (NEA): organic and psychogenic.
Organic seizures have a physical cause, the most common of which is fainting. If the underlying cause can be determined, this can then be treated which in most cases causes seizures to stop.
However, psychogenic seizures are more complicated and there isn’t one cause that can be used to explain all NEA’s, this means they can be hard to treat. Some people find that emotional disturbances or events in their past can trigger seizures later in life, but this isn’t the case for everyone.
The most common type of psychogenic seizure is a ‘dissociative seizure’, which the Epilepsy Society describes as a seizure which: “Happens unconsciously, which means that the person has no control over them and they are not ‘put on’.”
The British Medical Journal published figures that suggest up to 90,000 people are misdiagnosed with epilepsy each year. Professor Markus Reuber works in Clinical Neurology at Sheffield University and believes that misdiagnosis is a problem that needs to be addressed.
He said: “The topic of NEAD does not receive enough attention – leaving the public and many health professionals very badly informed about a condition which can be treated but which can also persist and cause long term disability. The commonest problem is NEAD being mistaken for epilepsy, but epilepsy may also be misdiagnosed as NEAD.”
According to the Professor the average time between the start of the NEAs, to the time of diagnosis, is around four years for NEAD sufferers in the UK, and that three quarters of patients with NEAD are treated (inappropriately) with antiepileptic medication.
One major concern is what effect unnecessarily taking these antiepileptic medications would have on your body. Professor Reuber addressed this concern, saying that someone taking some of these antiepileptic drugs, who was non-epileptic, would be susceptible to the same side effects as someone who is epileptic, such as: osteoporosis, hormonal problems, reduced fertility, and negative effects on memory and concentration.
Professor Reuber added that no antiepileptic medication is known to be completely safe during pregnancy and that this medication can double the risk of abnormalities.
He said: “One drug (sodium valproate) increases the risk of having a baby with an abnormality to 6-10% if taken on its own, and even more if taken in some combinations.”
18-year-old Decazaar Atkinson experienced her own ordeal when it came to being diagnosed, experiencing everything from being told that she was lying about her seizures, to being put into an induced coma for monitoring, and after having her diagnosis changed three times, from epilepsy, to NEAD, and then was finally told she actually had a heart condition which had been causing her seizures.
Atkinson said: “I just try and stay strong through it and not let it bother me. It can quite easily be a condition which affects most of your life.”
Having an experience like that is bound to have an impact on your trust of an institution such as the NHS, with Atkinson adding that she would think twice about going to them in the future.
Atkinson added: “I wasn’t all too pleased with my treatment by the hospital, as although I was having seizures and they were aware of this, I found I was always pushed away and did not receive a lot of help or support from them.”
“I found it was hurtful, for not only myself but also my family seeing everything I went through and knowing the service I got was rubbish. I would like to see it changed, to know other people might receive better care than myself.”
Professor Reuber said that the tests available to help with diagnosis are not always very helpful so could therefore be responsible for the high rates of misdiagnosis: “When people have a first seizure, the information available about their seizure is often limited. There may not be a witness account. Tests in between seizures, such as brain scans or EEGs, are normal in about 50% of people with epilepsy and may be abnormal in healthy individuals who have never had an epileptic seizure. The diagnosis may only become clearer when there have been more seizures,” or when someone has failed to respond to prescribed antiepileptic medication.
It’s clear that this is a problem, which needs to be addressed, and there seems to be a general consensus that more education about the disease would help significantly in reducing the number of misdiagnosed cases.
Sue Hope would like to see more training about this condition because the process of explaining what you have, especially to a health professional, can be stressful.
Atkinson and Professor Reuber agree with the notion that education is the way forward, with Professor Reuber saying: “Access to health professionals with expertise in seizure disorders needs to be improved. More health professionals also need access to video-EEG. Training for doctors, nurses and paramedics needs to be improved further.
I was diagnosed with Non-Epileptic Attack Disorder in 2013. I was one of the lucky ones, and was never misdiagnosed with epilepsy first. However, the process was still a difficult one. It took a number of years to reach a diagnosis, originally I was put through counselling because they thought it was stress. My psychogenic seizures always manifested themselves as prolonged fainting periods, and when they first started I was constantly told by my Doctor that I was unlucky for being someone who fainted for so long, but that it was normal and I would ‘grow out of it’. It was only when I had a particularly bad one during a lesson at college that I finally got referred to a neurologist at the hospital, and was finally diagnosed. I have been lucky, my disease is not as life ending as it is for some.