Is it all in your head? – Understanding non-epileptic seizures.
17th February 2021
Written by Olivia Fretwell
In our last blog post, we discussed Functional Neurological Disorder (FND). This is defined by the NHS (2018) as a disorder of “medically unexplained symptoms”. Symptoms may be for example sensory loss, tremors, paralysis or even non-epileptic attacks/seizures. These are caused by the malfunctioning of the nervous system; the nervous system has not been damaged or attacked, it just isn’t functioning how it should. Some professionals describe the disorder as a ‘software’ problem as opposed to a ‘hardware’ problem. This blog post will focus in on one manifestation of FND in particular, non-epileptic seizures (NES).
NES are also known/referred to as psychogenic seizures, functional seizures, dissociative seizures or non-epileptic attack disorder (“Non-epileptic seizures a short guide for patients and families”, 2011). These types of seizures can be psychological in nature and are not caused by definable abnormal brain activity, unlike in epilepsy. Someone may present as experiencing an epileptic seizure, as outwardly they possess similarities, for example both can include experiencing a loss of control over one’s body movement or loss of consciousness (Kiriakopoulos, 2019). This is why they are easily confused and misdiagnosed. It must be flagged and understood that someone is still experiencing a seizure, and that they cause much distress and anxiety for both the person and family/carer around them.
The causes of non-epileptic seizures vary but there are a number of disorders and contributors frequently associated with non-epileptic seizures; for example, mood disorders, anxiety, post-traumatic stress disorder, physical/emotional/sexual abuse, personality disorders, substance abuse and someone who has experienced traumatic brain injury (Kiriakopoulos, 2019). Taking account of a patient’s personal history will typically help give clues as to the potential trigger. Non-epileptic seizures can also sometimes be physiological in nature and be caused by (hypoglycaemia) low blood sugar or related to abnormal heart functioning (“Non-epileptic seizures and dissociative seizures | Epilepsy Society”, 2020). Various medical investigations can be done in order to ‘rule out’ these other causes.
Non-epileptic seizures can be very difficult to identify and differentiate from typical epileptic seizures, and therefore very difficult to treat, so an initial diagnosis of epilepsy will most likely be given/suspected instead. Consequently, this delays the diagnosis of non-epileptic seizures or FND. One study showed that around 20-40% of in-patients who had been admitted to epilepsy centres were found out to have been misdiagnosed and instead were experiencing non-epileptic seizures (Milán-Tomás et al., 2018). The problem then perpetuates as during this time the patient could be prescribed anti-epileptic medication, or be intubated and/or catheterised – all of which prolong hospitalisation and exacerbate the symptoms. Early identification of the correct diagnosis is required and desired in order to inform a positive prognosis (Toffa, Poirier & Nguyen, 2020).
How can epileptic seizures be distinguished from non-epileptic seizures? These two types of seizures can be differentiated by the use of video EEG (electro-encephalographic) telemetry; this involves placing the patient in a room under surveillance by doctors, who are able to watch and study the patient having a seizure. The EEG recordings gather information via electrodes placed onto the scalp of the patient and these record brain wave activities. A cardiac electrode is then placed on the heart and measures heart rate to further inform the investigation (O’Sullivan, 2016). By correlating this evidence, experts are able to recognise with confidence key differences between epileptic seizures and non-epileptic seizures.
A recent programme produced by the BBC called ‘The Diagnosis Detectives’ investigated a man who suffered every day with multiple unexplained seizures. [Spoilers]. Initially, a Consultant Cardiologist investigated and was unable to find any cardiological abnormalities or evidence of low blood sugar, and they therefore confidently ruled out a physical cause. A Consultant Neurologist then investigated the patient using EEG telemetry and found evidence for non-epileptic seizures. Further to this, after reviewing the patient’s general practitioner records and discussing them with the patient, he was able to identify the trigger – his traumatic past experiences in the Army. For the full programme and more information, follow the link to BBC iPlayer here.
Treatment can be in the form of addressing any underlying psychological problems from past experiences/trauma or a psychiatric disorder, through a range of psychological therapies. This may be for example cognitive behavioural therapy, prolonged exposure psychotherapy, interpersonal and psychodynamic psychotherapy, mindfulness based psychotherapy or family therapy. A multi-disciplinary team approach is needed, and a coordinated approach to incorporate all angles to ensure maximum therapeutic benefit (Kiriakopoulos, 2019). A longitudinal study by Tolchin et al., (2019) found an association (causation wasn’t established) between increased attendance of psychotherapy treatment sessions and a reduction in non-epileptic seizures, reduced A&E hospital visits and an improved quality of life after 1 to 2 years. This study demonstrates that engaging and attending treatment sessions can lead to significant benefits, as even though patients were not seizure free, it still improved their quality of life.
There are also a variety of self-help techniques suggested by FND professionals to help patient try and ‘ground’ themselves before seizure onset. Examples may be breathing exercises, focusing on one’s surroundings, counting techniques or having heightened bodily awareness for seizure warning signs. These may be for example sweating, increased heart rate, unusual taste, and pins & needles. Having a heightened awareness of these symptoms can help someone prepare and perhaps even ward off or prevent a seizure (“Grounding Techniques – FND Hope International”, 2020). For more detailed information on other useful grounding techniques visit the FND Hope website here.
For those diagnosed with non-epileptic seizures as part of FND, prognosis can vary. A 2011 review article looked at 18 previous studies and reviewed the prognosis found in each study. The relevant studies showed that only 40% or less of the participants achieved seizure remission at the follow-up. This finding may be quite de-motivating or disheartening for those embarking on treatment (Durrant, Rickards & Cavanna, 2011). One study however by Riaz, Comish, Lawton & Scheepers (1998) found that 67% of participants had a ‘good outcome’ i.e. seizure remission or greater than a 50% reduction in the frequency of the seizures. Prognosis research in the paediatric population has discovered a lot of more positive results; for example, Wyllie et al., (1991) found 57% of the sample were seizure free after diagnosis, only 22% had ongoing seizures, and 43% had seizures that were gradually decreasing in frequency. The research on prognosis is therefore mixed and more research needs to be done. However, as the above research suggests, positive engagement and an optimistic mindset towards treatment can help improve and maximise chances of recovery.
There is also a ‘fear’ surrounding this diagnosis, for both the patient and professionals, due to the unpredictable nature and associated anxiety of the seizure onset; they are uncomfortable for the individual to endure and uncomfortable for those watching on. For medical professionals, they also have a ‘fear’, as this disorder sits on the border of neurology and psychiatry, so who takes responsibility for treating it? Who has the confidence to give the diagnosis and recommend treatment when the prognosis and the research surrounding treatment effectiveness is relatively sparse? (Salpekar, 2019).
Similar to an FND diagnosis, there is also an associated stigma of the diagnosis. The patient experiences real disabling seizures, but these aren’t classified as part of a medical disorder. NES also have unclear antecedents, all of which acts as a huge psychological barrier to treatment. Patients not only have to accept the cause of the diagnosis i.e. psychological, but also locate the cause and work through their difficulties. During this time, they will most likely relapse and still experience seizures; they may view this as ‘failing’, but in reality, that is the nature of the disorder and frustratingly, all part of the process to reach seizure reduction/remission. There is no ‘quick fix’ unlike with epilepsy which can be treated or controlled with medication, as well as it being very well known and understood (Salpekar, 2019). That is where patients’ understandable grievance and distress manifests.
For more information on epilepsy, non-epileptic seizures, or FND, visit some of these great resources below. We hope you enjoyed our second piece on FND and would love to hear any experiences or points of view on this misunderstood and life changing disorder.
https://epilepsysociety.org.uk/non-epileptic-seizures
References:
- Durrant, J., Rickards, H., & Cavanna, A. (2011). Prognosis and Outcome Predictors in Psychogenic Nonepileptic Seizures. Epilepsy Research And Treatment, 2011, 1-7. doi: 10.1155/2011/274736
- Grounding Techniques – FND Hope International. (2020). Retrieved 11 February 2021, from https://fndhope.org/living-fnd/healthy-living/other-techniques/
- Kiriakopoulos, E. (2019). Psychogenic Nonepileptic Seizures (PNES): Cause, Diagnosis and Treatment. Retrieved 9 February 2021, from https://www.epilepsy.com/learn/diagnosis/imitators-epilepsy/psychogenic-nonepileptic-seizures-pnes-cause-diagnosis-and
- Medically unexplained symptoms. (2018). Retrieved 11 February 2021, from https://www.nhs.uk/conditions/medically-unexplained-symptoms/
- Milán-Tomás, Á., Persyko, M., del Campo, M., Shapiro, C., & Farcnik, K. (2018). An Overview of Psychogenic Non-Epileptic Seizures: Etiology, Diagnosis and Management. Canadian Journal Of Neurological Sciences / Journal Canadien Des Sciences Neurologiques, 45(2), 130-136. doi: 10.1017/cjn.2017.283
- Non-epileptic seizures a short guide for patients and families. (2011). Retrieved 9 February 2021, from https://www.sth.nhs.uk/clientfiles/File/pd3922_NonEpilepticSeizures.pdf
- O’Sullivan, S. (2016). It’s All in Your Head(1st ed). Vintage.
- Riaz, H., Comish, S., Lawton, L., & Scheepers, B. (1998). Non-epileptic attack disorder and clinical outcome: a pilot study. Seizure, 7(5), 365-368. doi: 10.1016/s1059-1311(05)80004-4
- Salpekar, J. (2019). Treatment Works, So Who’s Afraid of PNES?. Epilepsy Currents, 19(3), 159-160. doi: 10.1177/1535759719841354
- Tolchin B, Dworetzky BA, Martino S, et al. Neurology. 2019;92(7):e675-e679. doi:10.1212/WNL.0000000000006848.
- Toffa, D., Poirier, L., & Nguyen, D. (2020). The first-line management of psychogenic non-epileptic seizures (PNES) in adults in the emergency: a practical approach. Acta Epileptologica, 2(1). doi: 10.1186/s42494-020-00016-y
- Wyllie, E., Friedman, D., Luders, H., Morris, H., Rothner, D., & Turnbull, J. (1991). Outcome of psychogenic seizures in children and adolescents compared with adults. Neurology, 41(5), 742-744. doi: 10.1212/wnl.41.5.742