Authors: Charlotte Davies / Editor: Jon Stone, Jane Boissiere, Marianne Novak, Liz Herrieven / Codes: CAP15, HAP15, MHP3, NeuC4, NeuP3, SLO1, SLO2 / Published: 12/04/2022
The Emergency Department sees a lot of patients with seizures. Many of these are caused by epilepsy and many others are functional in nature. The terminology can be confusing and the management is difficult to standardize, especially as there is little evidence around this. This blog article aims to consolidate several resources and anecdotal practice around functional seizures. Please do point us towards any further sources of information. If this piques your interest, catch up on the RCEM Events functional disease study day with many functional neurological disease (FND) experts present.
To the FND community: we know that communication around FND is a challenging area. Some of you have been involved in the creation of this article. We hope we have got the terminology correct and that you will continue to research and improve the care of those with FND.
Up to a fifth of patients who present to specialist clinics with seizures do not have epilepsy, even if they are on treatment for epilepsy1. One in ten patients with functional seizures will present with apparent status epilepticus. Functional neurological disorder is the name given to motor and sensory symptoms caused by a change in the way the nervous system functions rather than by a structural disorder5. Functional seizures are a subtype of functional neurological disorder.
Functional seizures is the preferred term.
Hysterical seizures, pseudoseizures, conversion disorder, psychogenic disorder, somatisation seizures are no longer accepted terms, as they are considered pejorative.
- Non-epileptic seizures or non-epileptic attack disorder (NEAD) say what the condition is not, but not what it is. Non-epileptic seizures refers to many causes of seizures for example functional seizures, cardiological etc.
- Psychogenic NES is considered dualist and still a “negative” term – it focuses on one issue – psychogenic aetiology – for a problem that involves the brain as well. The term psychogenic implies symptoms are “all in your head” and “not real” whereas actually the mind, brain and body cannot be separated like this and are inextricably linked.
- Dissociative seizures is a term sometimes used and does describe the mechanism of the event without presuming aetiology so is more acceptable. All functional seizures are fundamentally dissociative, even the hyperaware ones (which may be less obviously dissociative).
- The term “medically unexplained” is not applicable here as the symptoms are explained – we can make a positive rule-in diagnosis, and we actually know quite a lot about them.
So functional seizures are the preferred term that allows for standardization. Unfortunately, ECDS doesn’t yet code for “functional seizures” and instead uses many outdated terms.
Functional neurological disorders are problems in which patients cannot access their neurological system properly causing problems with the functioning of the nervous system and how the brain and body send and receive signals. Automatic movements may not be affected, but volitional control is lost.
FND describes neurological symptoms related to the somatosensory or motor system, like visual loss, weakness and seizure. The word “neurological” references the recognized problem with the functioning of the nervous system. This is different from “medically unexplained symptoms” where symptoms are unexplained – FND is explained, and diagnosis is from rule-in tests rather than rule-out.
Physical and/or psychological risk factors can underlie functional symptoms. Stress is a risk factor – it’s not the only factor, and may or may not be present, just like not all patients with a heart attack are smokers. For some people this stress 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, and might not be stressed. These risk factors increase the chance of developing functional symptoms rather than directly causing them.
Functional seizures are a specific type of FND. They are seizures that often look like epileptic seizures or syncope but are not caused by identifiably abnormal electrical activity in the brain. Associated symptoms may include fatigue, cognitive difficulties, memory loss, confusion on coming around from the seizure and temporary paralysis of parts of the body. There are three main types:
- falling down
- lying down and staring blankly
As with epilepsy, the seizures differ from person to person. People are generally aware (but not always) of what is occurring but are unable to respond. “Not there” a graphic novel about functional seizures is worth looking at as it explains what is going on in an excellent way, supported by useful graphics. Your patients will like it too.
Recognising Functional Seizures
Diagnosis should be made due to clear signs of FND, and not just because the patient has a psychological comorbidity or recent stress5.
There are no 100% reliable ways of clinically differentiating a functional seizure from epilepsy, but table 2 in the linked article3 describes a few more consistent signs with tongue biting, incontinence and post-ictal period being listed as non differentiating. Daily seizures, or a high frequency of hospital admissions with seizures, is more likely in functional seizures, and some patients suddenly fall and lie still with their eyes closed for more than a minute5.
Table 2. Clinical features distinguishing functional from epileptic seizures
|Highly suggestive of functional seizures|
|Closed eyelids during ictal peak||Patients may actively resist eyelid opening.||+++|
|Prolonged duration||Most epileptic seizures will stop spontaneously in 2 min or less. Particularly useful if it resolves spontaneously after prolonged duration, without significant postictal period.||++|
|Fluctuating course||Movements may wax and wane in intensity or stop and start.||++|
|Ictal awareness/memory of seizure||Only relevant for generalized seizures (abnormal movements of all four limbs). Caution: frontal lobe seizures can involve bizarre movements with retained awareness. Loss of awareness is standard for most functional seizures.||++|
|Ictal/postictal weeping||Relatively specific for functional seizures, although low sensitivity. May also have other signs of emotional distress.||++|
|Asynchronous limb movements||Caution: can also be present in frontal lobe seizures.||++|
|Side to side head shaking||May rarely be present in epileptic seizures. Good differentiator for generalized shaking events only.||++|
|Response to stimuli during ictal period||Only applies to generalized shaking attacks.||++|
|Highly suggestive of epileptic seizures|
|Figure of four sign||One arm flexed at elbow, other arm extended at the elbow, usually present just before secondary generalization.||+++|
|Guttural cry/scream||During tonic phase, typically at seizure onset.||++|
|Prolonged rigid phase with cessation of respiration||Based on authors’ experience.||++|
|Postictal stertorous breathing||Low-pitched sound from back of throat, like sound from nasal congestion or snoring.||+++|
|Unhelpful features common to both|
+++ = highly reliable; ++ = reliable; + = suggestive
a Reliability determined based on available clinical data and author consensus.
If you witness a functional seizure, it is very important to document everything very carefully, so that the next care provider has all the necessary information. Rule out and document medical causes – don’t just say “ECG normal”, document the rhythm and conduction intervals – your neurologists will love you. Document what you see without using “neuro-lingo” – tonic-clonic is so often wrong it becomes meaningless.
Treating Functional Seizures
Many of the resources around treating functional seizures are focused more on the “long-term” solution with CBT and hypnosis considered useful. For us in the emergency department, I’ve not found many evidence-based strategies when faced with a patient actively having a functional seizure and, as care is so personalized, RCTs will be difficult to do. What is clear is that treating functional seizures as though they were epileptic seizures is not risk-free and giving these patients benzodiazepines is likely to worsen the dissociation and prolong the seizure. We’ve made some treatment suggestions in the “protocol” that follows and look forward to hearing your thoughts. There’s some evidence that acceptance and commitment therapy is useful – but that’s not something we would start in ED!
* A person having a functional seizure is not controlling it or faking it. They may be unable to respond if they are in a dissociative state.
* They can probably hear everything you say whilst in or recovering from a seizure. It is human nature to interpret all suggestions negatively – be careful and considerate in what you say.
* Be guided by family members, friends or care plans to decide if the patient needs admitting
* Remember, the person is genuinely frightened and in need of help. They know the ED is busy and have not come to cause problems. Treat them with kindness and courtesy and with regular explanations.
* Do not force them to try to move limbs that may be temporarily paralysed.
Suggested Suspected or Confirmed Functional Seizures Pathway: Adult and Paediatric ED
Here are some suggestions for treating functional seizures in ED. We’ve referred to existing evidence as much as possible, but there are gaps – looking forward to your comments and suggestions.
Active Seizing: Confirmed or Suspected Functional
- Speak kindly and calmly to the patient, without negativity, whilst understanding they may be unable to respond.
- Protect them from injury with cushioning under the head and removing hazards etc.
- Remove any spectators, especially those commenting negatively about “faking” or “attention seeking”
- Access emergency care plan (if available)
- Ask family or friends present if patient has consented to being video-recorded.
- Avoid touch – the patient might not be comfortable. If you do have to touch the patient tell them what you’re doing and why.
- Utilise family who may be used to managing seizures and reassure them if they are not.
- Do NOT force the patient out of the seizure with cruel tricks to “prove” they’re making it up.
- Avoid benzodiazepines as benzos are pro-dissociative and tend to lengthen the episode. Look for signs of retained awareness. If lorazepam exacerbates symptoms, functional seizures are more likely.
- Document duration of seizure, type of movement, and what is moving and whether rhythmic and synchronous, and whether eyes closed, open, or tightly screwed closed.
No-longer Seizing: Suspected Functional
- Full physical assessment
- ECG – document rhythm and conduction intervals
- Bloods including blood glucose and sodium
- Seizure history
During – things they noticed. Could they feel or hear other people? How did they feel?
Afterwards – how did they feel? Emotional? Relieved?
- “Other Stuff” ask about any associated cognitive symptoms, automatisms, sleep relation, prodrome, visual symptoms, depersonalization, tremulousness, anxiety.
- Collateral history – including video if possible.
- HEADSSS assessment (don’t force disclosure of trauma)
- Talk about diagnosis, but make sure the setting is right. The words below may be helpful: “I think you have what we call “functional seizures” because of the way your seizures are presenting. I do not think you have epilepsy, because of what I have found on examination. Just to double check nothing else is happening, we’ll refer you to the neurology doctors and get some brain imaging, but I suspect they’ll agree.”
This says what this is and why you think it – and then says what it is not. The what it is is as important to say as the what it is not.
“Functional seizures are when the brain goes into a trance-like state called “dissociation” suddenly, all by itself. Dissociation is the medical word for being cut off or distant from your surroundings.
We think it does this as a “reflex” response – sometimes to get rid of a horrible feeling that many people report just before. After a while, it will often happen for no reason. It might be when you are most relaxed or it might be during a stressful situation.
It is an automatic response of the brain. They are not produced deliberately and do not mean that you are going crazy, and they can get better5.”
In the same way that a computer may freeze if you open too many windows, the brain uses seizures as a way to ‘shut down’ or “switch off” when it is overloaded. This causes some physical symptoms, not yet explained by any recognised disease, but they are very real. This is not all in your head. Possible inside triggers can include physical symptoms such as pain, fatigue or light-headedness but also emotions like stress or anxiety, thoughts or even memories. The triggers for functional or dissociative seizures do not need to be truly dangerous or threatening but they may still prompt your brain to go into a “flight or fight” mode. This reflex is often so rapid that people have no recollection of what started their seizure. To them, the seizure started “out of the blue”. These reflexes are a part of the brain which creates automatic responses and behaviours. It is used to protect you but this time it is working overtime and is overdoing it! (Overreacting) Less is more.
Let that part of you know that it is safe now for you to rest and allow everything to return to the normal balance which your body knows is just right for you.
Once the reflex is triggered, the brain seems to get stuck—a bit like a computer which has “frozen”—when the computer screen is on but the keyboard does not work. Like a computer, the brain may have to “reboot” before it works again.
The best treatment for functional or dissociative seizures is for you to train your brain to deal differently with the triggers for your seizures and the situations in which they are likely to happen. What overloads your brain? There are lots of things that help. Many people find 5 – 4 -3 – 2 -1 grounding techniques useful. My last patient found box breathing really helpful.
The “my last patient” introduces story telling which is a useful therapeutic method.
Which technique do you think will help you most?
This introduces a double-bind. A technique will help – not helping is not an option.
There aren’t any pills that stop this from happening. Brain overload can be caused by many things – some people find stresses can be a trigger, but what the stress is might not be obvious. Sometimes obligations, endless tasks, social expectations and the like pile up, until it is impossible to continue – a bit like a stress fracture. And sometimes, there’s good stress or eustress which is still a trigger.
Some people find it useful to tune into the flow of their thoughts and watch as they pop in and out of your mind. Allow yourself to recognise what you feel emotionally with each of these thoughts. Don’t try to push the thoughts away, just recognise that they exist. If you start to become upset, focus yourself on continuing to take long, slow breaths4.
FNDHope and other charities have support groups. “This is not an easy problem to put right, but it does have the potential to improve, and many people do make a good recovery.5“
This introduces future pacing.
- Refer to neurology or paediatric team for confirmation of diagnosis, stating clearly you suspect functional seizures.
- If diagnosis confirmed consider referral to outpatient CAMHS or GP for ongoing management. Consider referral to tertiary services eg. SLAM
- Confirm driving status. The risk of having a functional seizure while driving a car is very low, and once functional seizures have not happened for a while, patients can drive again.
- Add what you have told the patient to the discharge summary (and the medical notes)
- Provide patient with a further information patient leaflet and a copy of the discharge summary.
- Ask for consent to video future seizures and encourage family to do so.
Confirmed functional seizures: No-longer Seizing
- Consider full assessment as above.
- Ask the patient what techniques have been found useful and support them in using them.
- Explore attendance hopes and aims – the patient might be concerned seizure pattern has changed, or they might have injured themselves, or might have attended for a completely different reason with a coincidental seizure.
For Further Information and Help
About Functional Symptoms
- Neuro Symptoms – Functional Neurological Disorder (FND). FND Guide.
- FND Hope
- Supporting people with Functional Neurological Disorders (FND). FND Dimensions.
- Epilepsy charity – Dissociative seizures.
- Information about non epileptic seizures and Non Epileptic Attack Disorder. Nead -Non epileptic attach disorder.
- Explains the myFND smart phone app that has been designed to help you with your symptoms of FND.
- NESD website – Neurokid
- FND Action
Books and Videos on functional seizures
- The Sleeping Beauties – by Suzanne O’Sullivan talks about cultural awareness around seizures.
- It’s all in your Head – by Suzanne O’Sullivan helps highlight some of the diagnostic processes around functional illness with some good cases but is more reflective of doctors dilemmas than one for patients – so I wouldn’t recommend it to patients.
- Brain Storm – by Suzanne O’Sullivan is a lot more neurologically focussed, but still very interesting.
- Psychogenic NES – by Lorna Myers is a more patient focussed overview, with very little strategies.
- Not There was made specifically for patients, and is worth having accessible.
- Dis-sociated is a film made with, and by friends of patients and is worth a watch.
I haven’t read “View from the Floor” and I’d quite like to read the book on integration of care – but haven’t yet allocated the funds for a >£50 book – so if you’ve read it, please tell me what it says.
- Mellers JD. The approach to patients with “non-epileptic seizures”. Postgrad Med J. 2005 Aug;81(958):498-504.
- Reuber M. Dissociative (non-epileptic) seizures: tackling common challenges after the diagnosis. Pract Neurol. 2019 Aug;19(4):332-341.
- Finkelstein SA, Cortel-LeBlanc MA, Cortel-LeBlanc A, Stone J. Functional neurological disorder in the emergency department. Acad Emerg Med. 2021;00:1–12. https://doi.org/10.1111/acem.14263
- Myers L. Psychogenic Non-Epileptic Seizures: A Guide. Createspace Independent Publishing Platform, 2014.
- Bennett K, Diamond C, Hoeritzauer I, et al. A practical review of functional neurological disorder (FND) for the general physician. Clin Med (Lond). 2021 Jan;21(1):28-36.