Functional seizures / NEAD
‘NEAD’ stands for Non Epileptic Attack Disorder. In the US and other countries the name Psychogenic Non Epileptic Seizures (PNES) may be used. In the UK there is currently a shift to renaming NEAD as Functional Seizure Disorder/functional or dissociative seizures as a symptom of FND if other functional neurological symptoms are present.
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. Functional seizures can also co-exist with Epilepsy and other functional neurological symptoms.
As with Epilepsy, the seizures differ from person to person and may present as dissociation, blackouts, falling to the ground (drop attacks), twitching and jerking. People are generally aware (but not always) of what is occurring but are unable to communicate.
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), for others an accumulation of stress over time, and for others no reason at all. Many people are confused by the diagnosis as they don’t feel particularly stressed, especially given some people have seizures during rest or whilst sleeping.
Due to the similarity with Epilepsy, functional seizures are diagnosed by neurologists or Epilepsy specialists. A detailed description of seizures, ideally seeing them in person or on home video, is the mainstay of diagnosis. Further diagnostic details are in the video below.
The potential impact of functional seizures on the person and those close to them cannot be understated. Many are afraid to go out in case they have a seizure, and become increasingly isolated. Depending on the type of seizure, people can frequently be physically harmed.
All aspects of life can be affected with many losing their jobs, or for younger people unable to continue with education, as often establishments are unwilling to make reasonable adjustments as required by the Equality Act 2010. 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 current understanding amongst the health sector, especially in emergency care, can lead to people being accused of faking, drug abuse or attention seeking. Seizures can look bizarre in some cases given the person’s brain/nervous system is sending/receiving incorrect signals to different parts of the body.
It has been suggested at times that seizures can be self-controlled, which is 100% not true and a grave misinterpretation commonly made by emergency services as a person can in no way engage with how the body is reacting. In some settings a person’s anxiety may be heightened with strangers round them, especially if they are being treated poorly. Given this could cause a nervous system response, which may be that person’s trigger, it should NEVER be perceived as a performance.
Correct diagnosis can take several years, with many being treated unnecessarily for Epilepsy with attendant risks. Anxiety and depression are common comorbidities, which is understandable given the distress they can cause.
The current accepted medical treatment is specialist Cognitive Behavioural Therapy (CBT), although this does not work for everyone and there are very long waiting lists. A large CBT randomised control trial CODES reported no real significant seizure reduction after treatment, however it did help with overall health management. Other treatments such as Eye Movement Desensitization and Reprocessing (EMDR) for those with traumatic triggers are being investigated. There are currently no existing, or approved, medications for functional seizures. Some people may be prescribed anti-anxiety medication or antidepressants if appropriate for treating possible triggers of seizures.
It has been reported that people can 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 accessible.
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. This is especially relevant if care is given to potential triggers of seizures.
Seizure Medical Alert card provided by FND Action free of charge.
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.
www.nonepilepticattacks.info Note, this website has not been updated since 2011 so will most likely contain some outdated information. However it may help with some general guidance.