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The doctors tell me I have psychogenic seizures? What does that mean? I’m not faking it!
Psychogenic non-epileptic seizures (PNES) are when a person has a physical event that looks like a seizure such as staring off or shaking of the body, but is not actually having seizure activity in the brain. If they were to have a brain wave test called an electroencephalogram (EEG) performed, it would not show any seizure activity. PNES is a type of psychiatric disorder called “conversion disorder” where a non-physical complaint can present just like a real physical issue.
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What causes PNES?
We don’t really know of any one cause for PNES! Patients sometimes have a history of trauma, even from many years ago. Sometimes, patients develop these events as a defense mechanism. The important thing is to understand that these events are very real for patients; they often may not be able to respond or remember what happens to them during their events. They are not faking it or making it up and appropriate recognition and treatment is needed to make patients better.
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Who is at risk for PNES?
People with certain mental health struggles like anxiety, depression, and PTSD may be at higher risk. A history of trauma, being hit in the head, or abuse might also increase the risk of PNES. Remember though that these factors are not always present in someone with PNES, nor does having any of these factors mean that a patient will definitely develop PNES.
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Why is PNES tricky to diagnose?
PNES is tough to diagnose because they look so much like true seizures. Doctors may start PNES patients on anti-epileptic drugs (AED’s) which are the drugs used to treat seizures from epilepsy because they think the patients are having true epileptic seizures. AED’s generally don’t help patients with PNES though because they don’t have the unusual brain activity that causes epileptic seizures! Instead, AED’s expose patients with PNES to many side effects including worsening anxiety, depression, and suicidal thoughts.
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If you can’t use AED’s, then how do you treat PNES?
Since PNES is a psychiatric disorder, the best person to treat PNES is a psychiatrist or psychotherapist. They can use a wide range of techniques including talking therapy, hypnosis, and EEG-feedback to treat PNES. Medications like anti-depressants can also be helpful to treat any other conditions like anxiety and depression which may be present.
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What is the stigma associated with PNES?
People dealing with PNES can face a lot of stigma because others may think they are faking their symptoms to get attention or to take advantage of the medical system. But it’s important to understand that most people with PNES don’t purposefully make up their symptoms. Many of them have had challenges in their past which may contribute to their condition. PNES patients should be treated with special care and compassion, which will help them to heal.
Helpful Links:
https://nonepilepticseizures.com/epilepsy-psychogenic-NES-information-links.php
https://health.usf.edu/care/neurology/patient-ed-materials
Author: Rohan Thomas