There are several types of spells in which people briefly experience a loss of control, with symptoms such as convulsions, unresponsiveness, sensory changes, and more. Epileptic seizures are most common and are accompanied by abnormal electrical discharges in the brain which can be seen on the electroencephalogram (EEG). Most patients with epilepsy are able to control their seizures with anti-seizure medications.
Nonepileptic seizures (NES) are diagnosed in 20-30% of persons admitted to epilepsy centers across the United States. During these very distressing spells, there are no abnormal electrical discharges on the EEG. These spells are found to be connected to personal distress or life problems that may be happening now or have happened in the past. Unlike epilepsy, nonepileptic seizures often change in their symptoms over time and do not usually respond very well to anti-seizure medications.
They are diagnosed by careful evaluations involving a complete history of a patient's background and detailed descriptions of the patient's events. In addition, the patient goes through testing, at an Epilepsy Monitoring Unit (EMU). It is important to be evaluated by an experienced doctor who specializes in epilepsy to confirm the correct diagnosis.
Causes of NES are many but generally are related to the body’s way of coping with emotional stress. They may include specific disturbing events (recent or in the past), very high life stress or losses, or internal conflicts. These stressors can produce a wide variety of neurologic symptoms such as convulsions, paralysis, loss of awareness, sensory changes, or even pain. Sometimes patients with NES have gotten so used to just trying to live their lives, they do not notice the amount of tension or conflict that they are experiencing.
A diagnosis of nonepileptic seizure can be frustrating and upsetting. People have often been treated for a diagnosis of epilepsy, sometimes for many years. Patients with NES may feel confused, angry, or think that their doctor does not believe them because the spells feel outside of their control. Patients worry that others do not believe their seizures are "real." However, although the seizures are not epilepsy they are not voluntary.
Additionally, the diagnosis can be hard to understand because it can be difficult to find the psychological links that trigger the episodes. Besides, the realization that the mind can produce physical symptoms is a hurdle obstacle that many patients have difficulty dealing with creating a barrier to treatment.
It is fairly common that persons with NES have been given a diagnosis of epilepsy by physicians based on their reports of their spells. Many doctors do not have access to an Epilepsy Monitoring Unit (EMU) with a team of specialists and have to diagnose patients based on the possibility of the most dangerous cause, such as epilepsy. However, when the medications fail to control seizures, a complete evaluation by an epilepsy specialist is often needed. Continuing medications for epileptic seizures are not likely to be helpful and can create additional problems including long-term side effects and unnecessary costs. Sometimes minor abnormalities on a routine EEG are seen and can mislead the diagnosis. The gold standard for diagnosis is to be admitted to an Epilepsy Monitoring Unit (EMU) for video EEG monitoring.
Often it is helpful just to understand why the seizures are occurring. An honest discussion with a physician may identify stresses or conflicts which have created the conditions for non-epileptic seizures. Understanding this connection can help reduce the frequency of these attacks. Reassurance with formal testing to ensure that a patient does not have epilepsy is often times helpful in itself. The successful treatment of most patients depends on a trusting and honest relationship with an experienced and compassionate professional.
If the seizures continue, you will be referred to a professional who can help provide you with skills to understand and change those conditions which lead to the non-epileptic seizures. This will often be a mental health professional who is familiar with NES, in your area. They can provide you with guidance and skills to identify emotional and life triggers, early indicators that a seizure is coming on, and skills to manage the stress so that a full seizure does not need to occur. Fortunately, a recent well-designed research study found that some treatment programs can be effective for many patients. This treatment, which is available at Baylor University Medical Center, uses a structured program of skill building to help patients manage these spells and improve their quality of life.
RESOURCES: "The Truth about Psychogenic NonEpileptic Seizures" Epilepsy Foundation. http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures
Multicenter pilot treatment trial for psychogenic nonepileptic seizures: a randomized clinical trial. LaFrance, et al. JAMA Psychiatry (214) 997-1005. https://www.ncbi.nlm.nih.gov/pubmed/24989152