Functional seizures are a symptom of FND. Anyone, of any age, can develop functional seizures (formerly known as Non-Epileptic Attack Disorder [NEAD]). These seizures look like epileptic seizures but are not caused by the electrical activity in the brain. Functional seizures can co-exist with Epilepsy and other functional neurological symptoms.
A functional seizure can differ from person to person and may present as dissociation, blackouts, collapsing, twitching and jerking. People can be aware (but not always) of what is occurring and 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, bereavement, an accident or following a medical procedure), 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 it is common for people to have seizures during rest.
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 (see Useful Links below for guidance on how to video a seizure). Further tests may be performed during diagnostic stage, such as an EEG to measure electrical activity in the brain.
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 can become increasingly isolated. Depending on the type of seizure, people can frequently be physically harmed.
All aspects of life can be affected with people losing their jobs or being unable to continue with any current education. This can often be because establishments are unable 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 potentially having to step in to the carer’s role. A lack of understanding amongst others can lead to people being accused of faking seizures, attention seeking, or issues related to drugs. Witnessing a seizure can be scary, and it is important that those around know what to do in this situation. FND Action provide a TOOLKIT so that somebody can see your situation and understand what to do.
It has been suggested at times that during a seizure a person is able to control it, which is not true and can be a grave misinterpretation. A person can in no way engage with how their body is reacting at the time. In some settings a person’s anxiety may be heightened with strangers around them, especially if they are being treated poorly. A seizure should NEVER be perceived as a performance, and the person who has experienced the seizure will need to relax once the seizure has finished.
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 trauma 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 (see examples below) 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 appropriate treatment and support people may be able to gain 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.
How to video a seizure guidance provided by FND Action.