An Introduction to Working with Functional Neurological Disorders

for:

North Staffs Aspiring Psychologist Group

https://fnd-for-combined.netlify.app

Dr. Chris Gaskell

Senior Clinical Psychologist

Neuropsychology

North Staffordshire Combined Healthcare NHS Trust

Disclaimers

• Emotionally pertinent areas 😦

• Potentially distressing videos 📹

• I’m learning too¹ 🧑‍🎓

1. Acknowledgements: to past colleagues Dr Mary King & Abi Methley for their prior support in developing these slides.

Background

Video by Massachusetts General Hospital

Terminology

• FND = Functional Neurological Disorder.

  • Umbrella Diagnosis ☔.

Subtypes include:

• FDS= Functional Dissociative Seizures (aka NEAD [Non Epileptic Attack Disorder] and others).
• FMD = Functional Movement Disorder.
• FCD = Functional Cognitive Disorder.
• Functional Stroke.
• Functional Tics.
• And many others.

- Brief explanation. epilepsy but without the same underlying electrical processes. Different brain structural changes.

- Really important because treatments for seizures are not effective for functional seizures.

- FND is an umbrella term that captures all the different types of seemingly neurological symptoms.

Diagnoses:

Functional Neurological Symptoms Disorder (DSM-V)

• Inclusion term to Conversion Disorder

• Diagnosis requires motor and/or sensory findings.

• Evidence of incompatibility between symptom and recognized neurological/medical conditions (APA, 2013, Stone et al., 2010b).

• Symptoms must impair social/occupational functioning or lead individuals to seek a medical opinion.

• No duration or severity criteria, or explicit rules for exclusion based on additional symptoms.

Dissociative Neurological Symptom Disorder (ICD-11)

• Much push back on terminology from FND charities and specialists around the world.

Videos of FND

• FDS 1
• FDS 2
• FDS 3
• FDS 4
• Jerks
• FMD
• Tics

Timings:

1. “2m54s”
2. “13m20s”
3. “0m59s”
4. “0m44s”
5. “2m04s”
6. “0m00s”
7. “0m44s”
8. “0m00s”

• These visualisations come from a recent survey of people living with FND.
• This is the largest survey of this kind. As you can see on the right hand side from the symptom cooccurrence network there is a high comorbidity of various forms of symptoms with FND.
• Quite concerning are the rates of co-occurance with other symptoms which are not core FND symptoms, for example 93% of people with FND also experience fatigue.
• From the visual analog clock on the left you can see the responses to a range of questions from people living with FND. Quite interesting is the response to the question “Cause a combination of physical/stress”, is very high. This is a little insight as to what people with FND believe the cause of it to be, and based on this it is both physical and stress related.
• Heterogeneity.
• Co-occurance network.
• Biggest survey conducted on FND.
• 50% of people had seizures. 93% had fatigue!
• VAS - caused by physical and emotional factors.

Taken from a survey of 1048 individuals living with FND (Butler et al., 2021)

Symptom Heterogeneity

Classified by neurosymptoms.org, extracted 2021

• FND takes many shapes and forms. The symptoms that one person experiences for FND may look very different to another persons experiences. This is what we call heterogeneity.As the constellation of symptoms that individuals experience can be so different, it is inherently difficult to classify subtypes. What we can do however is group the types of symptoms that people tend to experience. This grid is based on the euro symptoms website which is a fantastic resource. For each of these categories of symptoms there is a attached information sheet for patients and professionals to download.
• Working in and then EAD service, the people that I see all experience some form of functional seizure. Despite this, the vast majority of patients will also experience another form of functional symptom.
• Pretty much anything neurological!
• Lots of people presenting to the NEAD service experience other symptoms.

Functional vs. Organic

• Functional = Impairment of function.

• Not suggesting a behavioural or intentional component.

• Functional vs. Organic debates are outdated and inaccurate dualism.¹

• Can a person be non-organic?²

• Software problem vs. hardware problem?

• (i.e., not relating to or derived from living matter).

• What organic symptoms are not in some way mediated by psychological processes? and what repeated motor patterns or neuronal activity can not lead to structural change?

1. Not related to the behavioural notion of ‘functional analysis’

2. See this video by John Stone or the excellent review paper on ‘functional’ vs ‘organic’

Diagnosis, Prevalence & Terminology

Important Notes around Diagnosis in FND

• Based on positive clinical signs/symptoms¹.

• Internal inconsistency (reversibility) and/or to a lesser extent incongruency with known patterns of structural neurological disease.

• Trauma is not required for diagnosis (more on this later).

• Perceptions of ‘diagnosis of exclusion’ and hesitancy lead to damaging delays in diagnosis.

• Following diagnosis, new symptoms are frequently (and wrongfully) dismissed.

• For too often been a diagnosis of exclusion

• There is clearly a need for careful examination and ruling out of other conditions HOWEVER this should not be the default position.

• Inconsistent symptoms (mediated by other mechanisms: cognitive, emotional, physical).

  • Example = recent man with tics.

• Trauma not necessary (high potential to cause harm).

• Do not dismiss. One of the most powerful thing I hear from patient with FND is the stories of how they have been left and treated by health clinicians.

  • One of the things that repeatedly comes up is how new symptoms suddenly get dismissed when there is a dx of FND in the care notes.

1. Helpful articles on positive symptoms include Aybeck, 2022 & Finkelstein et al (2021)

Symptoms: Functional Movement

Taken from: FND in the emergency department Finkelstein et al (2021)

Symptoms: Functional Seizures

Taken from: FND in the emergency department Finkelstein et al (2021)

How Common Is FND?

FND Prevalence: 50/100000 in the population (Carson, 2016).

Functional Seizure Prevalence:

• 2-33/100000 (Carson, 2016).

• Recent estimate = 24/100,000 (Norway) (Villagrán, 2021) .

• Estimated 20,000 people in the UK.

• 8-12% of new presentations to seizure clinics (Angus-Leppan, 2008).

• 11% of seizures presenting to emergency services (Dickson et al., 2017).

• Difficult to accurately quantify prevalence rates due to:

  • diagnostic delay

  • patients being lost to follow-up.

• May not seem common; but patients frequently attend to A&E and psychology services so I will guarantee that pretty much everyone will work with someone at somepoint.

• It is difficult to accurately quantify prevalence rates.

What Are The Risk Factors For FND?

• Age:

  • Presents across the life span.

  • Young adults (15–19) most at risk: 59.5 per 100,000. (Villagrán et al., 2021)

• Gender:

  • Female preponderance = 60-80%.

  • Disparities less evident in older cohorts (e.g., Jungilligens, 2021)

• Epilepsy: High rate of co-morbidity.

• Learning Disabilities: High rate of co-morbidity (Rawlings et al., 2021).

• Demographics:

  • White and low SES

Age:

• Modal age of onset is 16. mean and median = 28.

• Age disparity dissipates in late adulthood.

Epilepsy:

• 12–22% Dual diagnosis (meta-analysis).

• Challenging to diagnose

LD:

• Median = 9.4% of comorbid ID was found across eleven PNES cohorts (Rawlings et al., 2021).

Demographics:

• Over 50% of all patients live in areas categorised within the highest deprivation quintile

• Over two- thirds of patients being unemployed at the point of seeking treatment for PNES (Goldstein et al., 2019).

For a detailed account of risk and aetiological factors see Popkirov et al., (2019)

What Are The Risk Factors For FND?

• Psychiatric Co-morbidity:

  • Anxiety and depression.

  • Interpersonal disorders.

  • PTSD, Trauma.

• Health Co-morbidity:

  • Pain & Fatigue.

  • Sleep disturbance.

  • Migraine.

  • TBI.

  • Epilepsy Surgery

• PTSD: 38%

• Norm rather than an exception (Nicholson et al., 2020).

• Psychiatric conditions: especially affective, trauma-related and/or dissociative disorders, are typically present in over 50% of most FND samples, with lifetime rates even higher.

• Personality disorders: higher rate than the general population. Particularly EUPD and cluster C presentations.

• Epilepsy surgery: New onset following surgery (upto 9%).

• TBI: Rates vary a lot. Pooled frequency of about 42%

For a detailed account of risk and aetiological factor see Popkirov et al., (2019)

Misdiagnosis & Delayed diagnosis

Difficult at times to distinguish from other conditions.

Often leads to problems with:

• Journey to diagnosis can be very long. When using gold standard assessment (VT) mean duration of 8.4 years (median = 3) (Kerr et al., 2021)

• Response to functional seizures with seizure protocols (very common, see Jungilligens et al., 2021).

• Prolonged use of anti-convulsants.

• Lack of access to necessary support.

• Time to receive treatment even longer.

• Among 1210 patients diagnosed and treated as status epilepticus about 79 (8.1%) were discharged with a final diagnosis of pPNES (mean age = 32.6 years; 8 to 84 years).

• (although 48% in same year).

Terminology and Language

Many terms have been used:

• Non-epileptic attacks.

• Psychogenic seizures.

• Psychogenic non-epileptic seizures (PNES).

• Dissociative seizures.

• Conversion disorder.

• Functional seizures.

• Psychological seizures.

• Pseudo-seizures.

• Langue is important

• Range of terms

• Language has often included content that dismisses people are leaves them feeling like the condition isn’t real.

• Some highly unfavoured by the FND community. Particularly stigmatising terms.

• Some terms hold on to pejorative views.

Labels Matter

What do Patients Prefer?

Taken from recent Loewenberger, 2021 (UK service evaluation)

Preference ratings are reverse scored, so high scoring items are least preferred terms.

• UK service evaluation

• The bar chart that you can see shows the preference ratings of the commonly used terms in order to show rank.

Not to be Confused With

Malingering: Deliberately manufacturing symptoms for material gain e.g. Money.

Factitious Disorder: Deliberately manufacturing symptoms for emotional gain e.g. Attention.

Do not mistake symptoms for factitious/malingering just because it doesn’t fit with what your framework.

FND is not Malingering! (see Edwards et al., 2023)

• Big take away message = real experience.

• This is really important because there is a history of people with FND not being believed or been described as “faking”.

Theory

The Mind Body Link

Psychological experiences influence the body All The Time.

The cause is not medical but the impact on the body is real.

• Sudden shock = heart beats faster.

• Embarrassment = face goes red.

• Upset = eyes produce tears.

It is normal for changes to happen in the body without a medical cause or disease.

FND also happens through this Mind-Body link.

• People often told that it isn’t physical - comes as a big shock.
• What we know about the mind and body are that they are, as I’m sure you already know, intrinsically related.
• How we think and feel can have a huge influence on our body and our visceral experience. On our very relatable set of examples, I’m sure people have had experience of shedding a tear and feeling really sad or heart rate increasing and feeling quite scared or shocked.
• This relationship between the mind and body is in a small part A small illustration of what can happen in NEAD. In thinking about any NEAD and also in treating it we are constantly thinking about this mind body link.

Autonomic Reactions

Fight/flight/freeze response - evolutionary based fear response that is adaptive for survival.

Freezing is one of the main defensive threat reactions across species

• Parasympathetic branch of the nervous system.

• A means of responding to a threat or a trigger (at times adaptive)

Trauma

• Traumatic event: incident causing physical, emotional or psychological harm.

• Single event or repeated incidents (i.e., complex).

• Recent or a long time ago.

• Highly common in FND (compared to case controls, Ludwig et al., 2018).

• Does not consistently explain aetiology or onset.

• Not always helpful to ask.

• Be careful with the notions of conversion. It may be relevant for some but not all.

• Trauma does not explain why one patient gets a seizure and another paralysis
• Nor does an abusive experience 10 years ago explain why the symptom starts on the 7th Sept 2017
• Sometimes more helpful to ask about the emotional reaction to sudden onset physical symptoms.
• The magnitude of a trauma is less to do with how severe the event is but how severe it is percieved and processed by the individual.
• Trauma is something that gets brought up a lot when discussing functional seizures. Trauma or a traumatic event is an event or incident which includes some form of harm either physical emotional or psychological.
• This might be a single isolated incident (example car crash). Or it might be a more cumulative effect of lots of little things that happen over time (Example bullying).
• Lots of people with functional symptoms have experienced some form of trauma, however there are also a subset of patients who have not.
• When there is no trauma present, it can leave conditions feeling a little confused as to why the functional symptoms have developed. For some people, there may have been some form of trauma but which can no longer be remembered or is not recognised as being traumatic. For example so I might have had a close family bereavement, and the individual with functional symptoms may feel that this was unrelated to the functional symptoms, however it might be that overtime this is related.

Rates of Stressful Life Events

Taken from recent Ludwig et al 2018.

Important Point

Although Rates are high, many people with FND do NOT report having experienced any trauma.

Our results show that the rate of childhood and adult stressful life events and maltreatment, particularly emotional neglect, is increased in patients with conversion (functional neurological) disorder compared with controls. The association was stronger in cases of childhood onset and when we compared with healthy controls as opposed to disease controls. However, a proportion of cases report no stressors. We concluded that stressors are relevant to the cause and development of conversion (functional neurological) disorder and therefore a potential treatment target, but exposure to such stressors is not an essential diagnostic feature. Our findings support the changes to DSM-5 and have implications for ICD-11.

“13 studies that specifically ascertained that the participants had not had either severe life events or any subtype of maltreatment all found a proportion of patients with functional neurological disorder reporting no stressor.”

Biopsychosocial & 3 Ps

Taken from Reuber 2009

Taken from Nicholson 2020

Integrated Cognitive model

Model proposed by Reuber & Brown (2017)

• Single explanatory framework.

• Helps to account for variation in psychological history.

• Symptoms = FND scaffold + breakdown in inhibitory processes.

• Brain response to sensory input provides error.

• Scaffold becomes activated (e.g., by arousal, emotions, thoughts).

• Over time this becomes a conditioned response.

• Wilful submission.

- the ICM suggests that the observable and subjective elements of PNES result from the automatic execution of a learnt mental representation (broadly speaking, “idea”) of seizures (the “seizure scaffold”), typically in the context of a high level inhibitory dysfunction resulting from chronic stress, arousal and other factors that compromise high level processing (Fig. 1).

- Sensory inputs can be trumped by our pre-existing expectations (McGurk Effect).

- Like a conditioned reflex, the seizure scaffold can be triggered by a range of internal or external stimuli. This often occurs in response to elevated autonomic arousal, although it can become divorced from abnormal autonomic and emotional activity and may be triggered by thoughts or perceptions which are, objectively, quite neutral.Triggering of the seizure scaffold often disrupts the individual’s (full) awareness of distressing material. The seizure scaffold is more likely to be triggered in the presence of dysfunctional inhibition, which could be due to chronic stress but also have “physical” causes such as illness or the effects of medication.

- However, the ICM can accommo- date the clinical and psychological heterogeneity evident from so many of the studies discussed above, while indicating how factors such as previous traumatic experiences, current life adversity and physical health problems may contribute to PNES. Importantly, however, none of these factors is essential for the development or maintenance of the disorder, even though they may be of central importance in specific cases.

Integrated Cognitive Model

Taken from Anzellotti et al., 2020 (Based on Reuber & Brown)

Predictive Processing Errors

Treatment Approaches

What Treatment is Indicated?

• It depends on the person.

• Heterogeneity requires idiosyncratic approach.

• For many patients, treatment will require MDT input.

• Clinicians with familiarity in FND.

• There will often (but not always) be a role for psychology in targeting behavioural cycles that maintain the symptoms (e.g., hyper vigilance, negative thoughts, safety behaviours).

• Limit in experience can limit effectiveness

• Input from physio, OT, SaLT should be appropriately selected based on symptom profile.

• Very seldom that services available with multi-disciplinary input.

NeuroSymptoms: Treatment Formulator

Support patients to use the newly developed tool from neurosymptoms.org

• Fantastic resource.

• Allow patients to learn about the diagnosis and get more information.

• Learn about the various symptoms of FND; select the pertinent ones; and consider missed ones.

• Gives a tentative set of suggestions of what type of help is likely to be needed.

• Beings to make suggestions about what some of the causes might be.

• CAVEAT THIS IS NOT A SUBSTITUTE FOR TREATMENT.

Role of Psychology

• Potentially suited to help all FND variants (won’t be necessary for all).

• Co-morbidities needs to be accounted for.

• Treating underlying and potentially long-standing distress (e.g., anxiety, depression, trauma).

• The paroxysmal role fairly well suited to psychological interventions (e.g., BT, CBT).

• Otherwise may need to be team input.

• MH should be treated irrespective of FND.

• Some people with lots of health and MH comorbidities benefit from focused work on FND.

• Some people need to work on the things underlying, which may be maintaining the FND.

• For some people: If you spend time focusing on the smoke (core FND) but don’t work on the underlying distress maintaining then treatment might not be effective and patients may relapse.

The Evidence Base?¹

• Psychology

  • Few RCTs.

  • Systematic reviews support psychotherapy for FND (Gutkin et al., 2021).

  • 47% patients achieve seizure freedom (Carlson & Perry, 2017).

  • Recent RCT however found no significant change for seizure frequency (CODES, 2020).

• Neuro-Stimulation

  • Small but emerging evidence base (Gonsalvez et al., 2021 for a review).

• Physiotherapy

  • Preliminary feasibility for physiotherapy (Maggio et al., 2019).

• Much of the evidence is on functional seizures.
• Carlson 47% = seizure free; 82% = seizure reduction of at least 50%.
• Not lots known about who doesn’t respond; or long-term follow up.
• non-invasive brain stimulation techniques (NIBS) may be effective

  • Transcranial magnetic stimulation (TMS)

    Ttranscranial direct current stimulation (tDCS) 

1. See Beal et al (2022) for a review of the area.

Acceptability

• Some patients ambivalent to treatment.

• Doesn’t always fit with patient view of difficulties.

• Comes following a long journey.

• High expectations.

• Psychology referral for physical symptoms. People often really unsure. Some drop out. Some don’t enter treatment.

• Desperation. last hope. High expectations.

How do Treatments Work?

• Multi-faceted.

• Relevant mechanisms of change across all therapeutic approaches.

  • Psycho-education likely to be important.

  • Ample evidence that CBT helps in the short term.

  • Trauma focused work important (if needed).

• Approach should be tailored (see Myers et al., 2021 for a guide).

• Psychoeducation crucial.

  • Recognising triggers and risk factors.

  • Heightening interoceptive capacity.

  • Strategies for circumventing (e.g., breathing, grounding)

  • Dealing with safety behaviours.

• Evidence that CBT helps in the short term.

  • Targeting catastrophic thinking.

• Trauma focused work important IF needed.

  • Big questions about who should provide this.

Resources

Websites

FND Hope

• FND charity

• Lots of helpful information and resources for patients.

FND Society

• Professional network for FND

• High quality teaching and educational material.

Manchester Neurosciences (Salford NEAD service)

• NEAD service website

• Information and clinical resources for patients and clinicians.

Neurosymptoms.org

• Informational website for patients and professions

• Lots of high quality resources and information sheets

Thanks for Listening !