‘NEAD’ stands for Non Epileptic Attack Disorder. Other names include Psychogenic Non Epileptic Seizures (PNES) which is mainly used in the USA, functional seizures and dissociative seizures.
Men, women and children of all ages can develop functional seizures. These seizures 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. Functional seizures can also co-exist with Epilepsy and other functional neurological symptoms.
As with Epilepsy, the seizures differ from person to person and can range from staring blankly (dissociation), 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 functional seizures are triggered by the brain’s response to overwhelming stress, which can be from emotional or physical (e.g. pain) triggers, but there may be other causes. For some people symptoms may proceed a specific traumatic incident (such as abuse, accident or death of a loved one), and for others, an accumulation of stress over time. Many people are confused by the diagnosis as they don’t feel particularly stressed.
How is it diagnosed
Due to the similarity with epilepsy, functional seizures are diagnosed by specialist neurologists or epilepsy consultants. 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 person and those close to them cannot be overstated. Many are afraid to go out in case they have a seizure and become increasingly isolated. Depending on the type of seizure, people can also be physically harmed.
All aspects of life can be affected with many 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 can suffer with family members having to step in to the carer’s role. Lack of knowledge amongst health professionals, especially those in emergency care, leads to people being accused of faking, drug abuse or attention seeking. Correct diagnosis can take up to 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. Anxiety and depression are common co-morbidities.
The currently accepted medical treatment is specialist Cognitive Behavioural Therapy (CBT) although this does not work for everyone and there are very long waiting lists. Other treatments such as Eye Movement Desensitization and Reprocessing (EMDR), for those with traumatic triggers, are being investigated. There are currently no approved medications for NEAD. Some people may be prescribed anti-anxiety medication or antidepressants if appropriate.
People may benefit from trying self-care techniques such as grounding/distraction when they feel a seizure coming on, however some may not have any warning. If people also present with other functional neurological 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, people may be 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.