LIVING WITH PSEUDOSEIZURES

Sarah J. Blake

Mini-Site Navigation

General information links
Personal experiences
Medications
surgery
Ketogenic diet
Other treatment options
Support groups
Nonepileptic seizures

Disclaimer

The information on this site should not be considered a substitute for face-to-face consultation with a medical professional. It is provided so that people with epilepsy, their families or caregivers, and the professionals providing treatment to them can work together to develop a treatment approach that works.

Reload for more book recommendations.

Note: Names have been changed in order to protect the privacy of the individuals mentioned in this article. Additionally, the word "pseudoseizure" has been used because it is prevalent in medical literature and is often the diagnostic term given to people. The author and much of the community now prefer the use of the term "psychogenic nonepileptic seizures" to describe the type of seizure discussed in this article.

"These are called pseudoseizures," Melanie's mother told me over the phone. I relayed the information to the paramedics, who had been called after Melanie had had two seizures on the night after she moved in with me.

I didn't know what pseudoseizures were or what kind of treatment Melanie would receive because of them. Naively, I assumed that the doctors and nurses responsible forher care would be kind and gentle. Surely they would understand how frightening the events were for Melanie.

They were more often than not much less than kind and gentle. Emergency room workers shouted at her and accused her of malingering, deliberately faking the seizures. Psychiatric attendants were abusive toward her, hauling her off to isolation and often leaving fingernail marks on her arms and legs. Doctors advised her to get counseling; but therapists claimed they did not treat seizure disorders.

Melanie's seizures affected many aspects of her life, including her ability to socialize. At times they even affected our lives as friends and roommates.

My heart was broken by the lack of understanding people had for this condition, which was as disabling as any other. Melanie was as frustrated as everyone else with her inability to control her seizures and the lack of appropriate, effective treatment. We began to search for information about epilepsy and pseudoseizures, hoping that we would turn up something helpful. We found little information about pseudoseizures, but over the years we learned many things about epilepsy and occasionally gleaned information from other people who had heard of pseudoseizures. Gradually, we learned that there is hope for Melanie when her seizures did not respond to antiepileptic medications.

We found that her seizures usually have some trigger. After learning this, we began to chart Melanie's seizures and the surrounding events and were amazed to find that there were some consistent triggering factors. Healing from emotional hurts is a long, hard process. Emotional control is something which requires much practice, and situations still catch Melanie off guard. In addition to these factors, epilepsy and other conditions which mimic it (e.g. migraine) can be aggravated by stress or emotional upset, creating the appearance of pseudoseizures. Physical illness can cause changes in the brain which affect emotional control. During times such as these, symptoms which arise because of poor emotional control can increase.

This article will present some of the things Melanie and I have learned through experiences and research. Neither of us is qualified to give medical advice, and this article should be regarded solely as informational and valuable only in that it encourages others to think about their own experiences. If you have concerns about your individual condition, talking with your doctor or therapist is the most appropriate course of action.

Coming to Grips with Psychogenic Seizures

What Are Psychogenic Nonepileptic Seizures?

Pseudoseizures is not generally a positive term. Most people assume that these events are purposeful acts designed to get attention. In medical literature, this is called malingering. In schools, at home, and even in hospitals, Melanie was instructed to stop having seizures. Privileges were taken away from her in an attempt to modify her behavior. At times she was even restrained or isolated. These tactics neither worked nor were pleasant for anyone involved.

Over time, I have come to prefer using the term psychogenic seizures to describe seizures which are not epileptic in nature and are induced by emotional stress. This trend has happened in medical literature as well. Articles now refer to "psychogenic nonepileptic seizures" rather than pseudoseizures. Many other physical conditions can produce seizures which are not epileptic, and it is very important to investigate all possible causes for the seizures. Sometimes a person knows in her heart that a seizure is not psychogenic. One of the best proofs of this occurs when a person "goes through the hoops" and experiences greatly improved mental health. In Melanie's case, this resulted in an improvement in her seizures. In my case, it did not. Read my story.

People who have psychogenic seizures are often not aware of the cause or able to consciously control the events. They are not malingering. They are often experiencing severe emotional stress, and their brain is finding a way to release it, to communicate feelings which they do not feel safe enough or possess the skills to put into words. Rage, fear, and panic are common elements which Melanie and I eventually identified as factors which led to the occurrence of psychogenic seizures.

It is not uncommon for a person who is diagnosed with psychogenic seizures to feel that she has been written off or is a hypochondriac. Often the recommendation of the attending neurologist is to get counseling. This can be very confusing and even upsetting since the person may have already been in counseling but still may be unaware of the factors contributing to the seizures. The first step in healing this condition is for the person experiencing the seizures to come to a positive understanding of the problems lying behind the seizures. Calling the seizures what they are is not enough. Getting counseling may not be an effective treatment unless the counselor is able to help the client find the root of the emotional problem. Talk therapy and behavior therapy may prove useless if the problem is deep-seated or involves a lack of skills for coping effectively with emotional upset.

Finding the Triggers

When doctors gave her the diagnosis of psychogenic seizures, their recommendation was that she get counseling. Melanie had been in counseling for several years, since before the seizures began. Counseling is only helpful if it addresses the cause of the problem. The issues behind the psychogenic seizures had not been addressed in her therapy. Anxiety had always been attributed to the fact that she was attending school away from home or that the academic work was "difficult" for her. In reality, it often had to do with fears about living independently and of being rejected by others.

A need for attention was identified, but the cause of this need was unaddressed. The identification of a need for attention can feel very much like an accusation, but the truth is that attention-getting behavior is natural and comes in all forms. People are created with a need for attention. The problem with the psychogenic seizure's function as a means of displaying emotions or expressing the presence of needs is that a seizure is not a clear or safe means of communication. Once the triggers have been identified, a person with psychogenic seizures may be very willing to risk the pain of facing the triggers if it means that needs can be expressed more clearly. The most important aspect of treatment is to help the person understand that whatever is triggering the seizures is a valid need and that there are valid ways to express it. Without learning those valid coping mechanisms, the person will continue to have seizures. This process can only be accomplished when the triggering situation has been revealed, and that can be a shameful process. It is important not to push the person into feeling that there must be a reason for the seizures--this becomes yet another source of stress.

Coming to grips with the diagnosis is the first step in a long journey toward regaining control of a life which can seem to have been stolen away by an unpredictable condition. Completeing this journey involves dealing with things which trigger psychogenic seizures, ensuring an accurate diagnosis and appropriate treatment, and making sure that adequate support is available for yourself or the person who is diagnosed with psychogenic seizures.

Dealing with Emotions

Melanie experienced several types of seizures, and eventually we learned that each indicated a different kind of emotion or triggering event. Recognizing these things helped me to find ways to support her in identifying her emotions and, in so doing, learn to predict and eventually to control her seizures. This is probably the most difficult part of coming to grips with psychogenic seizures. Most of these emotions were things which Melanie felt ashamed or afraid of. Facing them often meant that she faced things which she had tried to hide from herself as well as others.

Dealing with Triggers

As I said above, conditioning did not work to Melanie's benefit. The thing that lies behind her illness is pain and fear--pain and fear which was never recognized or accepted. The key to her recovery has been identifying the pain and fear, letting her know that experiencing it is acceptable and healthy, and giving her the tools to experience it in a way which will cause her to grow. She asked me often, "Is it ok to feel ... " Admitting to the feelings was difficult in the first place, but once she admitted to them and realized that often they were very normal feelings, she could begin to learn to cope with them. Feelings were behind many other behaviors which Melanie exhibited, and the more she got them out, the easier it was for her to avoid the unhealthy behaviors.

During times when she was facing intense emotions, she tended to experience other symptoms as well as or instead of seizures. As a friend and support person, I responded to these symptoms by trying to help her identify the triggering factor and focused on effective ways of addressing this. Often the other symptoms resolved as the triggering situation was resolved.

Getting Appropriate Treatment

The most important aspect of treating psychogenic seizures is treating the factors which cause them to occur. Learning to be aware of and control emotions, tolerate anxiety, and communicate effectively regarding one's needs and desires is crucial to mental health. Psychogenic seizures are little more than coping mechanisms which are employed because effective strategies for coping and responding to upsetting situations are not in place. There are many other such coping mechanisms. Focusing on the development of effective coping strategies is much more productive than focusing on diminishing ineffective ones without replacing them with something which works. Melanie and I eventually moved to separate states, and since then I have observed that cognitive behavior therapy can be very effective in replacing psychogenic seizures with more healthy coping techniques.

Diagnosis and Treatment: A Note to Professionals

Many articles in medical journals and textbooks suggest that people may have a mixture of psychigenic and epileptic seizures. Neurologists and psychiatrists acknowledge that diagnosis is difficult. Other medical conditions can mimic seizures, and so can dissociative disorders.

In Melanie's case, one of the factors we have discovered which triggers psychogenic seizures is the feeling of being evaluated or criticized. I believe that this had the potential to affect the accuracy of her video/EEG monitoring. The change in environment and routine was very stressful for her, as was the way staff in the hospital treated her. I do not know if being comfortable would have resulted in more accurate testing.

Fortunately, Melanie's doctors were willing to give her the benefit of the doubt. Depakote and Neurontin were helpful to her, as were some of the Benzodiazepines. It is very dangerous to assume anything. Overprescribing medications which obviously do not control the seizures can be dangerous, but withholding them can also lead to injury as a result of epileptic seizures which were assumed to be psychogenic seizures. Since the medications listed above are also useful in the treatment of psychiatric disorders, it is very possible that control of mood instability and anxiety resulted in better control of psychogenic seizures for Melanie.

It is also important to rule out other conditions which may be responsible for the symptoms. Some symptoms of rare types of migraine can mimic partial seizures. Most people understand migraine only as a condition which causes severe headaches. However, many people who have migraine experience times when the headache does not progress to a severe state--and some never have headaches but do experience other symptoms. On the other hand, there is also a strong possibility that a person with migraine may also have epilepsy. Read my story for more discussion regarding the difficulties in differentiating atypical migraine and partial seizures. Accurate diagnosis is vital to ensuring appropriate, successful treatment.

Support Systems

People who have psychogenic seizures do not always have control over their behavior, especially in the early stages. The seizure is a response to a feeling or event controlled by a part of the mind which may be unavailable at first, and until the person learns to work with that part of the mind to achieve seizure control she will need support and assistance from others to keep herself safe and to remain willing to make the often painful journey to wellness.

Responding to Pseudoseizures

Family, friends, and others who are often with a person who has pseudoseizures can offer a significant amount of help and support. Following are some tips which may be beneficial.

Many people who have psychogenic seizures also have epileptic seizures, and it is often difficult to know the difference. The best response is to keep the person safe, just as would be done in response to an epileptic seizure. Since many psychogenic seizures resemble epileptic seizures, responses can be provided according to the same criteria.

If it is an absence seizure, characterized by stiff limbs and staring, leave the person alone until it is over and try to keep the environment calm and free of startling noises.

If the event resembles a complex partial seizure and the person is able to walk around, gently lead or direct her to a place where she can sit or lie down, again keeping the environment calm.

If the seizure is generalized and the person is on the floor, turn her on her side as much as possible, position a pillow behind her head so that there is no possibility of hitting her head on the floor, and keep her hands away from her face while still giving her freedom to move. This can be difficult if one person is doing the management, but it is possible.

When the seizure is over, try to elicit some kind of response from the person. Some people have seizures in clusters and may be able to indicate whether they need to stay in the safe place. Some may find that they need to rest afterward. Others may prefer to return to normal activities.

Melanie sometimes had an aura before her seizures. Usually it was a headache in a specific place. Occasionally it was a feeling of fear or a strange mood swing in which she refused to discuss anything but answers yes and no when asked questions. This aura eventually provided clues to the things which triggered her seizures; however, in the beginning it served mostly as a help in keeping her safe. She was sometimes able to communicate when she was about to have a seizure so that she could get help from others. Other times she was able to get herself to a safe place before the seizure started or between seizures. Because her seizures were often provoked by fear, she got into the habit of seeking out help as she felt them coming on. Unfortunately, this sometimes also resulted in her having seizures in unsafe places because they would begin before she reached her destination.

I found that dwelling on the fact that Melanie had had a seizure aggravated the problem and kept the underlying issues from being addressed. If Melanie was not in a mood to discuss the issues or if we were in public where it was not appropriate or possible, we simply resumed whatever activity we had been doing.

As time went on, Melanie began to be able to take a more active part in controlling her seizures and identifying the triggering factors. Her need for outside support regarding the seizures lessened, and she began to benefit from emotional support which others could offer directed to the needs behind the seizures. She began working on methods of controlling her own anxiety. Occasionally she took an extra dose of medicine when she knew she would be exposed to a situation which caused her extreme anxiety; however, this gradually became less and less necessary as she became accustomed to doing new things and controlling her anxiety. Deep breathing was sometimes helpful. There has been a suggestion that hypnosis can help in controlling psychogenic seizures, but Melanie has not tried this.

Support

Nonepileptic is an online support group for people with any type of nonepileptic seizures. To subscribe, send any email to the subscription address using this link.

Effect of Pseudoseizures on Daily Life

Like epileptic seizures, psychogenic seizures can be very disruptive to a person's life. They have their own stigma, caused mostly by ignorance. People who are upset by the events are usually the ones who want to provide a quick fix explanation. There is no such quick fix. The emotional damage from these explanations may increase the feelings of frustration and inadequacy already existing for the person with psychogenic seizures.

The fact that a person's seizures are psychogenic is never an excuse to abuse a person physically. Often people are restrained more during a psychogenic seizure than during an epileptic seizure because it is assumed that the behavior is purposeful. Injuries caused by physical restraint can be very serious. During both psychogenic seizures and epileptic seizures, the person may appear to resist restraint. This is an unconscious behavior which is often mistaken for conscious refusal to comply.

It is important that people, including medical and psychological professionals, learn about psychogenic seizures, their causes, and treatment. Daily life for someone with pseudoseizures can be improved dramatically if therapists, nurses, and doctors know how to treat the underlying cause effectively. Treatment is most successful when the person is encouraged to explore his/her own feelings and assisted in learning to cope with the feelings in new ways.

Get more information on the web about various types of nonepileptic seizures.