How Are Functional Seizures Diagnosed? A Step-by-Step Guide for Caregivers
Functional seizures (also called psychogenic nonepileptic seizures or PNES) look like epileptic seizures but are caused by different brain processes, not electrical misfiring. Getting an accurate diagnosis is crucial because it opens the door to effective treatments like cognitive behavioral therapy, rather than medications that don't help and may cause harm. This guide walks you through the diagnostic journey, what to expect, and how you can support your loved one through it. You are not alone, and there are concrete steps you can take to help get the right care.
Key points
- Functional seizures are real and treatable; the diagnosis is made by video EEG and clinical evaluation.
- A correct diagnosis is essential to access effective psychological therapies like cognitive behavioral therapy.
- Antiseizure medications like benzodiazepines should not be used for functional seizures alone; discuss tapering with your clinician.
- Keep a detailed seizure diary and video recordings to help the doctor.
- Stigma is common but unfounded; educate yourself and others to reduce shame.
- Caregivers need support too—seek out resources and counseling.
What Are Functional Seizures and Why Are They Misunderstood?
Functional seizures are episodes that look or feel like epilepsy or fainting, but they have different causes and their own typical features. Unlike epileptic seizures, which result from abnormal electrical activity in the brain, functional seizures are thought to arise from a disruption in how the brain processes signals, often linked to stress, trauma, or other psychological factors. This condition has been historically misunderstood, leading to stigma and delayed treatment. The American Academy of Neurology (AAN) has issued a landmark guideline to help overcome that stigma and improve care, emphasizing that once an accurate diagnosis is made, potentially effective treatments are available.
Why Diagnosis Matters: The Path to Effective Treatment
Many people with functional seizures do not receive targeted, evidence-based treatment, which contributes to ongoing seizures and disability. The AAN guideline stresses that psychological interventions, such as cognitive behavioral therapy, are possibly effective in helping people achieve freedom from functional seizures. However, these treatments are only accessible after a correct diagnosis. Without it, patients may be prescribed antiseizure medications like benzodiazepines, which the guideline advises against for functional seizures alone, due to lack of benefit and potential risks. Getting the right diagnosis is the first step toward a treatment plan that actually works.
How Is the Diagnosis Made? The Role of Video EEG and Clinical Assessment
The gold standard for diagnosing functional seizures is video electroencephalography (EEG), which records brain activity and video of the episode simultaneously. This test helps distinguish functional seizures from epileptic seizures by showing no abnormal electrical activity during the event. However, the diagnostic process also involves a thorough clinical evaluation by a neurologist, often an epileptologist, who will take a detailed history, review any warning signs (auras) that may occur before a seizure, and rule out other conditions. Neuropsychological testing may also be used to assess cognitive, behavioral, and emotional functioning, providing additional clues. The AAN guideline emphasizes that the diagnosis should be made with care and communicated compassionately to reduce stigma.
General caregiving information, not medical advice. Check medications and major care changes with your clinician.
Step-by-step
Maintain a detailed seizure diary noting date, time, duration, triggers (stress, sleep loss, emotion), and before/during/after observations to help clinicians identify patterns.
See a neurologist (preferably an epileptologist). Bring the seizure diary and a full medication list (including OTC drugs and supplements).
Request a video EEG in an epilepsy monitoring unit. Follow medical instructions exactly, including any planned tapering of antiseizure medications to capture an episode.
After diagnosis, ask your neurologist: 'Can you help me understand how this diagnosis changes our treatment plan?' or 'What is the evidence this is a functional seizure and not epilepsy?'
If confirmed, request a referral to a therapist trained in cognitive behavioral therapy (CBT) or other evidence-based psychological interventions as recommended by the AAN guideline.
If the person is on antiseizure medications without epilepsy, discuss a safe tapering plan with the clinician—these drugs lack evidence for functional seizures and carry risks.
Join a support group for functional seizures (e.g., via Epilepsy Foundation). Sharing experiences can reduce isolation.
Educate yourself and family using reputable sources (e.g., AAN guideline summary, Mayo Clinic) to understand this as a real, biologically-based condition and reduce stigma.
Bring a witness who has seen episodes to appointments, or video footage, since self-report may be unreliable.
What not to do
Do not assume a normal EEG means the seizures are 'fake' or 'all in their head'—functional seizures are real and cause impairment.
Do not stop antiseizure medications abruptly without a doctor's guidance; withdrawal can cause severe complications.
Do not ignore other potential causes of seizure-like episodes (e.g., infections, medication side effects, metabolic issues)—ensure a thorough medical workup first.
Do not pressure the person to 'relax' or 'control it'—this worsens stress; instead, offer calm support and encourage therapy.
Do not rely solely on the person's own description for diagnosis—bring a witness or video for objective data.
Practical tools
Seizure Diary Template
Use a notebook or app (Seizure Tracker, Epsy) with columns: date, time, duration, triggers (e.g., stress, sleep loss, warning signs like fear, déjà vu, dizziness), episode details (movements, awareness, sounds), and post-episode state (confusion, fatigue). Bring to each appointment.
Doctor Questions
Ask: 'What is the evidence this is a functional seizure and not epilepsy?' 'What are the next steps for treatment?' 'Should we stop any current medications?' 'How do we explain this to family?'
Video Recording Protocol
If safe, record the episode on your phone: focus on face and body, note time, and do not restrain. Show it to the neurologist—it provides more objective information than description alone.
Medication Tapering Plan Sheet
If tapering is recommended, ask for a written schedule: weekly dose reductions, withdrawal signs to watch for (e.g., increased seizures), and follow-up plan. Never adjust doses without this plan.
Discuss with your clinician
Ask your clinician: 'Is a video EEG necessary for diagnosis, or can we use other tests like ambulatory EEG?'
Ask: 'What are the risks of continuing antiseizure medications if they are not helping? Should we consider tapering?'
Ask: 'Are there any medical conditions (like thyroid problems or vitamin deficiencies) that could mimic functional seizures and need to be ruled out?'
Ask: 'If my loved one has both epilepsy and functional seizures (co-occurring), how do we treat both safely?'
Ask: 'What psychological therapies are most effective for functional seizures, and how do we access them?'
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