Some think that because psychogenic non epileptic seizures are “psychological” that they somehow have less of an impact on life. But for many who have PNES, it can feel like a prison (see picture of handcuffs).
PNES has some very real emotional and physical effects and the potential to affect the finances and independence of the patient in a multitude of ways.
The unexpected nature of the psychogenic events can result in a steady withdrawal from activities as the patient doesn’t know when or where the event will occur. The loss of driving privileges is a real possibility if the episodes have the potential of endangering the driver or others.
Patients frequently share with me that they fear having a seizure-like episode in an uncomfortable (i.e. a dinner party or at a mall) or unsafe situation (i.e. while going down stairs). Others’ reactions are often also a motive for concern for patients who would prefer not to have an ambulance called or “not to cause a stir.” Independence can be steadily lost as it sometimes becomes necessary to have someone take the patient everywhere. Families may not know how to react to these episodes which further distresses everyone involved.
The emotional reaction to these major changes can be growing sadness, hopelessness, frustration, and loneliness.
The physical results of having PNES is often a decrease in physical exercise and fresh air as well as needing to take greater care in some cases to avoid sustaining an injury. Depending on the severity of the episodes, some patients may undergo costly emergency room visits and medical procedures. Even the loss of job may occur if events take place at work or if it becomes too difficult to travel to work.
And yet despite these very real and profound impacts that PNES can have on someone’s life, there continue to be too few treating doctors and mental health professionals who can work with this group of patients.
What we need is an organized network of professionals who can systematically research the condition and treatment options as well as train future treating professionals.