patient education : 04055--Psychogenic Non-epileptic Spells (PNES)

However, sometimes the exact cause of NES is difficult to figure out.

WHAT IF WE CAN’T FIND A CAUSE?

Counseling from a certified counselor, psychologist or psychiatrist is helpful even if a specific cause of NES cannot be found. These professionals can teach you techniques for dealing with the spells. Some techniques include relaxation training, visualization, biofeedback, and active problem solving skills.

AM I FAKING IT?

No, psychogenic spells are not “faked”. PNES episodes are very real. Just like the body uses a cough to express the symptom of a respiratory issue, PNES is the body’s way of expressing an underlying coping issue. There are other conditions where stress plays a part in the development of physical symptoms, such as panic attacks, fibromyalgia, irritable bowel syndrome, and tension headaches.

HOW DO YOU FEEL ABOUT THE DIAGNOSIS OF PNES?

You may be experiencing a range of emotional reactions when you find out you have PNES. This is understandable.

I am confused. - It can be confusing to be diagnosed with PNES, especially if you believed you had epilepsy. Epilepsy is quite well known and understood, while PNES is a condition that can be difficult to understand and is not so publicly known.

I am feeling angry. - Some people may feel angry that they were diagnosed with a different diagnosis in the past. Also, some people may become angry because it is hard to accept that they do not have epilepsy or some other neurological condition they believed they could have. They may feel angry with the doctor who diagnosed them with PNES because they continue to feel this is a wrong diagnosis.

I have some doubts. - Some people do not accept the explanation of PNES because they do not see any clear emotional difficulty in their lives or they do not feel stressed right before each episode. PNES episodes may occur without a clearly identifiable trigger or significant life stressor at the time of their onset. People sometimes think that if there are emotional factors at play, they “should be able to control the seizures” – not true; people do not choose when they become depressed or have a panic attack, and it is the same for PNES.

 I am feeling relieved. - Some people are glad that a clear diagnosis was finally made so they can receive the right treatment for their condition. It is often helpful to think about how you feel about your diagnosis. This can make it easier to discuss the problem with other people and to ask friends, family, and your doctor for help.

CAN I ALSO HAVE PNES IF I ALREADY HAVE EPILEPSY?

Yes. It is possible for people with epilepsy to also have PNES, although it is uncommon. EEG monitoring can determine which spells are epileptic seizures and which are PNES.

WHAT ARE THE TREATMENT OPTIONS FOR PNES?

Psychotherapy is the most common treatment for PNES. This will often include a treatment method called cognitive behavioral therapy (CBT). CBT examines the connection between a person's thoughts and their feelings and behaviors. CBT and other psychotherapies can take several months to work, so it is important that you continue your treatment plan during this time.

PNES does not respond to anti-seizure medications. However, medications for depression or anxiety may be used as part of the treatment plan. If you have previously been prescribed anti-seizure medication you doctor will discuss with you your best options for discontinuing these medications.

WHERE CAN I FIND A PSYCHOLOGIST?

If you are diagnosed with NES while in our Epilepsy Monitoring Unit, our Spell Workup, Assessment, and Treatment Team will try to help you find a psychologist in the area in which you live. Also, the American Psychological Association (APA) has a “Psychologist Locator” (http://locator.apa.org/). If you enter your zip code and “dissociative disorders” in the area of specialization field, the names and contact information of some professionals in your area may be found for you.