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A note about terminology

This web site deals mainly with Psychogenic Nonepileptic Seizures, which is one of two main types of Nonepileptic Seizures. The term "Nonepileptic Seizures" describes the "condition" while the term used before it describes the "type" of Nonepileptic Seizure. The other type is referred to as Physiologic Nonepileptic Seizures.

Another name that has been used in the past for NES is Pseudoseizures, but this term is inaccurate and has generally been abandoned. It implies that the seizures are faked. Another term sometimes used is Non-epileptic Attack Disorder (NEAD).

For the purposes of this web site we will be using the term Nonepileptic Seizures (NES) in speaking about Psychogenic Nonepileptic Seizures (PNES). This is due to it being the most common term currently used.

 

What are Nonepileptic Seizures?

Nonepileptic Seizures are epileptic-like seizures that are involuntary and not under the control of the person having them. It is very important to understand that these seizures are not "faked" and you are not "crazy". They are different from epileptic seizures in that they do not result from abnormal electrical discharges in the brain. Nonepileptic Seizures, however, can be just as debilitating as epileptic seizures. Nonepileptic seizures (NES) can look like any type of epileptic seizure including generalized tonic-clonic seizures, absence seizure, complex partial seizures, etc.  And it should be noted that true epileptic seizures sometimes occur in patients with Nonepileptic Seizures.

 

It has been estimated that anywhere from 150,000 to as many as half a million people have NES. This makes NES as common as multiple sclerosis. About 30% of patients seen at Epilepsy Centers are found to have NES.

 

What Causes Nonepileptic Seizures?

Nonepileptic seizures generally fall under two categories: psychogenic and physiologic. Physiologic NES can be caused by physical problems such as cardiac arrhythmias and hypoglycemia. Causes of Psychogenic Nonepileptic Seizures include events such as trauma experienced in childhood including sexual abuse, physical abuse, and emotional abuse. Even the stress caused by the death of a loved one and divorce can be causes. Some studies have shown that 75% or more of NES sufferers are women and many have a history of sexual, physical or emotional abuse in childhood. Often times patients with NES also have other psychological disorders like Post Traumatic Stress Disorder (PTSD), depression, anxiety, conversion disorder and dissociative disorders.  

 

How are Nonepileptic Seizures diagnosed?

NES are very difficult to diagnose and patients are often misdiagnosed as having epilepsy. This causes many to go incorrectly diagnosed for an average of 7 to 9 years before the correct diagnosis is made. This causes many sufferers to take anti-epileptic drugs (AED's) that are often ineffective, unnecessary and costly. Correct diagnosis is important for these reasons. Diagnosis of NES is made using video-electroencephalography (VEEG) as well as careful examinations of the patient's history. The absence of EEG abnormalities while simultaneously observing the patients seizure is considered a key factor in a diagnosis of NES.

 

How are Nonepileptic Seizures treated?

Treatment of psychogenic NES is best received from someone experienced in psychological treatments such as a psychiatrist or psychologist. Because NES is not a physical illness it makes sense to seek treatment from a psychiatrist or psychologist. Again, this doesn't mean you are "crazy" and in our opinion this is a courageous decision and is a sign of your strength. With treatment patients can learn to eliminate the need for this once necessary defense mechanism. Often time's the treatment will include discontinuation of anti-epileptic drugs (AED's), which are usually not effective.

 

We encourage you to talk with your doctor about this information and to read the following articles and studies for further information.

 

Psychogenic (Non-Epileptic) Seizures - A Guide for Patients & Families

Selim R. Benbadis, MD Leanne Heriaud, RN

Nonepileptic Seizures - A Guide for Patients and Families

Noreen Thompson RN, MSN, CS, PCLN, Ned Hunter Ph.D,

Nonepileptic Seizures: Reframing the diagnosis

Noreen C. Thompson, RN, MSN, CS, PCLN, Ivan Osorio, MD and Edward E. Hunter Ph.D,

Psychogenic Seizures

Topic Editor: Orrin Devinsky, M.D Epilepsy.com

The Truth About Psychogenic Nonepileptic Seizures

Jenna Martin, Senior Editor Epilepsy.com

The Workshop on Nonepileptic Seizures

W. Curt LaFrance Jr, Kenneth Alper, Debra Babcock, John J. Barry, Selim Benbadis,Rochelle Caplan, John Gates, Margaret Jacobs, Andres Kanner, Roy Martin, LynnRundhaugen, Randy Stewart, Christina Vert

Nonepileptic seizures treatment workshop summary

W. Curt LaFrance Jr, Kenneth Alper, Debra Babcock, John J. Barry, Selim Benbadis,Rochelle Caplan, John Gates, Margaret Jacobs, Andres Kanner, Roy Martin, LynnRundhaugen, Randy Stewart, Christina Vert (for the NES Treatment Workshop participants)Update on treatments of psychological nonepileptic seizuresW. Curt LaFrance Jr., John J. BarryTreatment of nonepileptic seizuresW. Curt LaFrance Jr., and Orrin Devinsky

The Treatment of Nonepileptic Seizures: Historical Perspectives and Future Directions

W. Curt LaFrance Jr., Orrin Devinsky

Avoiding the costs of unrecognized psychological nonepileptic seizures

W. Curt LaFrance Jr., MD, and Selim R. Benbadis, MD

Non-epileptic Seizures

Epilepsy Foundation

Nonepileptic Seizures - Information for Medical Professionals

Epilepsy Foundation

Nonepileptic Seizures: Time for progress

John R. Gates, MD

Psychogenic Nonepileptic Seizures

Taofik M. Alsaadi, MD, and Anna Vinter Marquez, MD

Nonepileptic Seizures

Elizabeth Bowman, MD

Information on Epilepsy: Non-epileptic Seizures

The National Society for Epilepsy

Non-epileptic Attack Disorder

Epilepsy Action

 

Disclaimer: As people without medical training ourselves we are not able to and will not in any way give medical advice here on this web site or by any other means. Patients must always talk with their physician about anything they read on our web site or anywhere else on the web. Please read our disclaimer.