Non-Epileptic Seizures
A Guide for Patients and Families
Your Passport to Wellness
This pamphlet was edited by Ned Hunter Ph.D. (Department of Psychiatry and Behavioral Sciences) and Noreen Thompson R.N., M.S.N., ARNP-BC (Department of Nursing) with the support of Dr. Ivan Osorio (Department of Neurology).
We would like to thank Selem Benbadis M.D. and Susan Stagno M.D. for their willingness to share their Patient and Family Guide with us. Some of this text is taken from their work. We would also like to thank W. Curt LaFrance M.D. for editing this second edition for us.
Introduction:
Your doctor has told you that you are having non-epileptic seizures (NES). Your electroencephalogram (EEG) did not show the abnormal electrical discharges in the brain which suggest epilepsy. However, non-epileptic seizures are a well-known condition.
While some non-epileptic seizures are caused by another medical illness, we are sharing this information with you because your doctor believes that at least some of your seizures are a way that your particular body responds under certain kinds of stress. These types of seizures have been called by various names. These include psychogenic seizures, non-epileptic psychogenic events, and episodic stress reactions.
Some people, even some health care professionals, do not understand this condition. They think that it means that the person does not have "real" seizures. But these seizures are very real. They are not produced on purpose. You are not "faking" or pretending to have a seizure. You are really having a seizure. People who have these seizures need understanding and appropriate care.
We wrote this handbook to give you information about this type of seizure. We hope it will be your "passport to wellness". It will help you talk about your condition with those around you and give you hope for recovery. This is what we want most of all.
What is the difference between epilepsy (epileptic seizures) and non-epileptic seizures?
Epileptic seizures are seizures caused by a certain kind of abnormal electrical discharge in the brain. It is important to identify these epileptic seizures because they can frequently be treated with anti-epileptic medications or other treatments for epilepsy.
Non-epileptic seizures are simply seizures that are not epileptic seizures.
Non-epileptic seizures are frequently indistinguishable from epileptic seizures from observation alone. Some non-epileptic seizures appear as convulsions similar to "grand mal" epileptic seizures. During a convulsion, the person loses consciousness, may fall down and shake. Others are similar to "petit mal" epilepsy. During a petit mal episode, the patient has a temporary loss of attention, "stares into space or dozes off". Then there are partial and complex partial seizures where parts of the body shake or engage in unintentional actions.
There are actually quite a few different kinds of non-epileptic seizures. Some medical conditions can mimic epilepsy such as heart disease, fainting, or a movement disorder. If that is suspected, you have been given instructions on following up. Also, you should follow up with your primary care doctor about your seizures.
There are also several different kinds of psychogenic seizures. The best person to determine what kind of illness causes your seizures is a psychologist or psychiatrist. This does not mean that you are "crazy" or that you are imagining your seizures. It certainly does not mean that you are making them up or "faking" them. It simply means that these professionals can diagnose the underlying cause of the stress, and they stand the best chance of helping you to get better.
Having your type of seizure may provide you with opportunities that you might not otherwise have. First, once the proper diagnosis is made, and the nature of this kind of seizure is explained to you, most of these seizures start happening less frequently and often even stop altogether. These seizures do not usually require ongoing anti-seizure medications, and so you may be able to stop taking these medications- you must work with your doctor on coming off of the medicine. Once the seizures have stopped, and stopped for good, you may have more independence- you could be able to drive again or even take on other activities that you thought you could not do anymore.
Definitions:
Epilepsy: A disorder in which abnormal electrical discharges in the brain cause repeated seizures.
Non-epileptic seizures: Seizures that are not epileptic seizures.
Physiological non-epileptic seizures: Episodic events which mimic epilepsy, but which are due to another medical condition or physical cause.
Functional non-epileptic seizures: Episodic or paroxysmal events which mimic epilepsy, but which are actually the way a particular person's body naturally functions or responds under certain conditions.
Episodic stress reactions or stress seizures: Seizures which reflect an episodic or paroxysmal expression of stress.
Psychogenic non-epileptic seizure or just psychogenic seizure: a real seizure which is the way that a particular person's body naturally responds under certain conditions. Such seizures are NOT intentionally produced or produced on purpose.
Conversion Disorder: A disorder in which a stress or conflict masquerades as a physical symptom.
Dissociation: Certain kinds of automatic, unintentional ways that a person detaches from important parts of their experiences such as losing time, losing their sense of identity, losing parts of their memory, or losing emotional feeling.
Post-Traumatic Stress Disorder: A disorder in which one has continued, repeated vivid reminders of a real terrible, horrible event that threatened their life or physical safety or they witnessed the terrible thing or event happening to someone else. Often accompanied by anxiety, avoidance of reminders of the terror, emotional numbing, and feeling damaged.
Pseudoseizure is another term sometimes used to describe non-epileptic seizures. It is misleading because it literally means "false seizure." They are "false or pseudo" only because the EEG is normal. This term often upsets patients because they think it suggests they are faking seizures.
How Common are non-epileptic seizures?
Non-epileptic seizures are very common in patients with seizures. At the University of Kansas Comprehensive Epilepsy Center, we see from 50 to 100 people who have non-epileptic seizures each year. The incidence of non-epileptic seizures due to stress in the body or psychological factors has been estimated to be one percent. That is, 1 in 100 people in the community have this type of seizures.
How can I be sure I have non-epileptic seizures?
Your neurologist might suspect non-epileptic seizures after reviewing your medical history and physical examination. In addition, other tests may be needed to rule out other causes or confirm a diagnosis. First and most important, epilepsy must be ruled out as a cause. The diagnosis of non-epileptic seizures is made only after tests for epilepsy have been negative.
A routine, 20 minute EEG helps diagnose epilepsy because it detects the abnormal electrical activity in the brain that indicates epilepsy. However, a negative EEG alone is not enough to diagnose non-epileptic seizures.
The most reliable test is EEG video monitoring. This test monitors a patient with a video camera and an EEG until seizures occur. It requires the patient to spend hours to days at a special facility. By analyzing video and EEG recordings of a seizure, the neurologist can determine whether abnormal electrical activity causes the seizures.
After epilepsy is ruled out, other conditions that might mimic epilepsy must be ruled out. These conditions include some types of heart disease, stroke, fainting, and sleep and neuromuscular disorders. If none of these conditions caused the seizures, the medical history, physical examination, and a psychological assessment may help determine the nature of the non-epileptic seizures. Such seizures could very well be psychogenic seizures or episodic stress reactions. Remember, these are real seizures and you stand your best chance of recovery by working closely with your doctor and following their recommendations.
Why did my other doctor say I had epilepsy?
Most patients with non-epileptic seizures have been treated with antiepileptic medications before the correct diagnosis is made. That does not mean that the doctors who were treating you were incompetent. Epileptic seizures can cause more harm than non-epileptic seizures. Physicians usually treat for the more serious illness when aren't certain of the diagnosis. If medication stopped the seizures, they were probably epileptic.
After various medications have been tried without success it is possible that the diagnosis isn't epilepsy.
Few physicians have access to EEG video-monitoring equipment. You are lucky your physician referred you to an epilepsy center for more thorough testing. This might help you find the appropriate treatment for your symptoms.
Some patients with epilepsy also have psychogenic seizures. If you have both, you and your physician must know which seizures are truly epileptic. You will continue taking medications for your epileptic seizures.
What causes psychogenic non-epileptic seizures (PNES)?
The simple answer is that we don't know. One day, we may understand the underlying medical basis for these types of seizures. There are promising advances being made. For example, some differences in the way some areas of the brain function in persons with psychogenic seizures have been discovered in neuro-imaging research. Furthermore, we know learning and certain activities change the way the brain functions, for better or for worse.
We do know that patients who accept the diagnosis tend to have better results and prognosis. Their seizure events become less intense and/or less frequent.
Do I really need to see a psychiatrist, psychologist or other psychotherapist?
If you are struggling with anxiety, panic or depression it will help you to seek a psychiatrist's opinion regarding treatment of any of your symptoms. In addition, you will want to see a psychotherapist for cognitive therapy, cognitive-behavioral therapy or just talk therapy.
Psychologists are employed in virtually every area of medicine today. You do not need to feel uncomfortable about seeing a psychologist. We recommend that you seek help from a psychologist with experience in treating patients with psychogenic seizures. The psychologist will simply talk with you at first about your seizures with the goal of developing an understanding of them with you.
Other therapists who may help you include Social Workers, Family Counselors and Nurse Psychotherapists. There is some evidence that learning self-hypnosis in addition to cognitive therapy is beneficial. Many professionals are studying which psychotherapy methods are potentially most helpful to patients suffering with PNES.
A psychotherapist may very well be able to help. They work with you to determine the nature of your seizures, and what can be done to reduce or eliminate your seizures. They have a variety of methods and are experts in stress management. Stress factors play a role in many if not most medical conditions, and the experienced therapist is in the best position to determine a treatment plan for you. Just talking about your seizures to a knowledgeable professional who will take the time to understand you and what you are going through can be enormously helpful.
Your neurologist may continue to see you but you should also see your psychologist or therapist. Be sure to share this pamphlet with the therapist and refer him/her to the reference list on the last page of this pamphlet.
The outlook for psychogenic seizures is often good. At KU Medical Center 90% of our patients who saw a psychologist for at least two visits or more had some improvement in their seizures, and 50% overcame their seizures altogether during the time these were monitored. Your psychologist will be in the best position to discuss with you the outlook for your recovery.
What about children?
Although psychogenic non-epileptic seizures are most common in adults, they also occur in children. Commonly, young people's psychogenic symptoms include headaches and stomach aches.
Most information in this guide applies to children/adolescents as well as adults. Young people's stressors are typically less severe and related to stressful events such as school or dating. Children have a higher recovery rate with appropriate treatment.
A final thought
There is hope for recovery when you receive a psychogenic non-epileptic seizure diagnosis. EEG video-monitoring allows the diagnosis to be made. Patients with non-epileptic seizures may work with their doctor to stop taking anti-epileptic medications.
We realize that this pamphlet might not have answered all of your questions. The references on the final page provide more reading for you and your therapist. This information in not intended to replace discussions with your physician. Rather, it is to help you understand that you have a well-known condition and that experienced professionals are available to help. The best available evidence indicates that working with a psychologist or therapist along with your neurologist offers you the best chances of recovery from psychogenic non-epileptic seizures.
Reference List
- Barry John ( 2006) Hypnosis and Psychogenic Movement Disorders. Psychogenic Movement Disorders: Neurology and neuropsychiatry: 241-248.
- Benbadis S, Stagno S. (1994) Psychogenic seizures: A guide for Patients and Families Journal of Neuroscience Nursing 26(5): 306-08.
- Bowman ES (1999) Non-epileptic seizures:Psychiatric Framework, Treatment and Outcome. Neurology 53, S84-S88.
- LaFrance WC, Barry J. (2005) Update on treatments of psychological nonepileptic seizures Epilepsy & Behavior 7(3): 364-374.
- LaFrance WC, Devinsky O (2004) The Treatment of Nonepileptic Seizures: Historical perspectives and future directions Epilepsia 45(2):15-21
- Lesser R. ( 1996) Psychogenic Seizures Neurology 46: 1499-1507
- Shen W, Bowman ES (1990) Presenting the Diagnosis of Pseudoseizure Neurology 40:756-759
- Thompson N, Osorio I, Hunter E ( 2005) Nonepileptic Seizures: Reframing the Diagnosis Perspectives in Psychiatric Care 41(2): 71-78.
- Thomson L. (1998) Nonepileptic Seizures: Avoid Misdiagnosis and Long Term Morbidity Clinician Reviews 8(3): 81-96.
- Wyllie E. (1991) Outcomes of Psychogenic Seizures in Children and Adolescents as compared to adults Neurology 41:742-744.
