‘NEAD’ stands for Non Epileptic Attack Disorder. Other names include Psychogenic Non Epileptic Seizures (PNES), Functional Seizures and Dissociative Seizures.
The main symptom is seizures that look like epileptic seizures but are not caused by electrical activity in the brain. Associated symptoms may include fatigue, cognitive difficulties, memory loss, confusion on coming round from the seizure and temporary paralysis of parts of the body.
As with Epilepsy, the seizures differ from person to person and range from staring blankly through apparent inappropriate behaviour such as shouting, laughing uncontrollably etc, to blackouts, to falling to the ground with various parts of the body, or the whole body, twitching and jerking. People are generally aware (but not always) of what is occurring but are unable to respond.
What causes NEAD
It is currently believed that NEAD is the brain’s response to overwhelming stress but there may be other causes. For some people this may be a specific traumatic incident (such as abuse, accident or death of a loved one), for others, an accumulation of stress over time. Stress can be physical (e.g pain) or emotional. Many people are confused by the diagnosis, as they don’t feel particularly stressed.
How is it diagnosed
Due to the similarity with epilepsy, NEAD is diagnosed by specialist neurologists. A detailed description of seizures, ideally seeing them in person or on home video, is the mainstay of diagnosis. Some people are sent to hospital for several days of video telemetry to try to capture a seizure on video and EEG.
How people are affected
The potential impact of NEAD on the patient and those close to them cannot be overstated. Many are afraid to go out in case they have a seizure and become increasingly isolated. All aspects of life are affected with most losing their jobs, often because employers are unwilling to make reasonable adjustments as required by the Equality Act 2010.
NEAD sufferers are unable to drive for certain periods of time (gov.org: assessing fitness to drive) and may be wary of using public transport. Relationships suffer with family members having to step in to the carer’s role. Lack of knowledge amongst health professionals leads to people being accused of faking, drug abuse or attention seeking. Correct diagnosis takes on average five years with many being treated unnecessarily for epilepsy with attendant risks. People may become increasingly incapacitated and no longer able to care for themselves, needing help with normal day-to-day activities such as washing and getting dressed. A few people are reduced to using a wheelchair when they leave the house. Anxiety and depression are common co-morbidities.
The currently accepted treatment is Cognitive Behavioural Therapy (CBT) although this does not work for everyone and there are very long waiting lists. Other treatments, such as EMDR for those with traumatic causes, are being investigated. There are currently no approved medications for NEAD. Some people may be prescribed anti-anxiety medication or antidepressants as appropriate. If people also present with additional functional symptoms, a collaborative care approach should be considered.
- Seizure Medical Alert card
- NEAD information sheet for ambulance/A&E staff
- Driving (Epilepsy and Dissociative Seizures)
- www.neurokid.co.uk has been set up by medical professionals in 2016 to provide information and guidance for young people diagnosed, and their families.
With the correct treatment and support, some people are able to gain some control over their seizures with a significant reduction in the number of events. However, others may continue to have daily, debilitating seizures for many years. Research is continually going on into this condition.