Information about non epileptic seizures and Non Epileptic Attack Disorder.

Initial Findings From Arizona State University Research

By on 3 January 2016 in News

Sometime ago, we were asked to take part in research being conducted at Arizona State University into how emotions affect the brain, particularly in regard to non epileptic seizures. The research project is ongoing but some initial findings have been sent out in a letter to participants which are as follows:

What are “non-epileptic seizures”?

Many of our participants suffer from what are technically known as “non-epileptic seizures.” (Your doctor may have referred to these as “stress seizures.”) With non-epileptic seizures, the body shows signs of seizures, such as twitching, shaking, or blacking out. Therefore, they are often mistaken for epilepsy, and it can take weeks, months, or even years to determine these seizures are not the same as epilepsy, and therefore do not respond to typical epilepsy medication (anti-epileptic drugs). With careful monitoring, though (i.e., video-EEG monitoring, where doctors monitor the brain while a seizure is occurring), it is possible to see that when a non-epileptic seizure occurs, the brain EEG shows normal activity. In other words, even though the body is having a seizure, the brain is not, which is why these are considered “non-epileptic.” (When someone has a seizure due to epilepsy, on the other hand, both their body and brain show signs that they are having a seizure.)
Doctors still don’t really know why non-epileptic seizures occur. One idea is that they occur in response to stressful events, especially very traumatic ones. Some researchers think that the body learned to have a seizure as a reaction to events that were very difficult to cope with, and now the seizures keep occurring, especially when there are similar “triggers” (i.e., other stressful or traumatic events). If you are someone who suffers from non-epileptic seizures, you know all too well that the symptoms are real—but there isn’t any medical evidence to suggest why they are occurring, which is why they do not fall into the category of a neurological disorder.
Because non-epileptic seizures are considered a “medically unexplained syndrome,” psychologists are often the best people to try and understand what’s going on, from the perspective of both the mind and the body. The good news is, as described below, psychologists have started to develop treatments that do seem to help those suffering from non-epileptic seizures.
In our research, we were interested in understanding the possible role of emotions in non-epileptic seizures. Technically speaking, we were interested in “emotional reactivity” and “emotion regulation”—or how strong your feelings are, and how well you are able to cope with these feelings.

What about trauma?

A second but related research goal was to try and understand more about what happens to emotions when people have been exposed to trauma. By “trauma” we mean witnessing or experiencing something horrible that sticks with you, such as a bad car accident, a natural disaster, domestic violence, or other physical or sexual abuse or assault. Unfortunately a large percentage of the population (anywhere from 50 to 80%) has been exposed to these types of traumatic events. In fact, almost all participants in our study (about 96%) reported experiencing one or more traumatic events in their lifetime—even college students who were included initially as “control” participants. Researchers have found that there is a possible link between trauma and non-epileptic seizures, because almost all individuals with non-epileptic seizures have suffered from some kind of trauma, especially past abuse.
Of course, though, a lot of people have suffered from severe trauma but don’t develop seizures, so it’s difficult to conclude trauma causes seizures. We wanted to explore the relationships between trauma and seizures further, though, as well as understand more about trauma and emotion unto itself, so we included in our research (1) individuals with non-epileptic seizures and trauma, and (2) individuals with trauma but without seizures.

Trauma exposure versus post-traumatic stress

Even though many people are exposed to very horrible events, some people have strong, lasting reactions and others don’t. Researchers are trying to understand why this is. In our study, we included people with a range of responses to traumatic events. Some had symptoms severe enough to meet criteria for post-traumatic stress disorder (PTSD), which includes symptoms such as flashbacks or nightmares, avoidance of any reminders of the trauma, and a heightened sense of awareness or “hyperarousal.” Others had symptoms of post-traumatic stress, but the symptoms were not severe enough to meet criteria for PTSD, and others still had exposure to trauma but a very minimal reaction to it later. From a numbers perspective, participants scored anywhere from 19 to 78 on a trauma symptom
checklist, where scores of 44 or higher typically correspond to PTSD-level symptoms.

What did we find?

We divided the participants in our study into 4 groups: (1) individuals with non-epileptic seizures; (2) individuals with symptoms of post-traumatic stress disorder (symptom checklist scores of 44 or more), but without seizures; (3) individuals with temporal lobe epilepsy (a seizure disorder that does have a very specific brain-based cause and is typically treatable with medication and if not, sometimes with surgery); and (4) control participants (individuals without traumatic stress reactions or seizures). The control participants included in our analyses had exposure to traumatic events (e.g., had been in a life threatening car accident) but did not develop PTSD, which makes them a good comparison group.
Trauma is associated with greater emotional distress. We found that regardless of whether someone had seizures, individuals who reported more symptoms of trauma were more likely to feel negative emotions in their lives (e.g., more worry, feelings of anxiety and depression) and to report more physical and mental health symptoms in general, compared with individuals with temporal lobe epilepsy or control participants.
Of course, it’s hard to know which came first: previous research suggests that—due to a combination of “nature and nurture” (genes and environment)—some people are more likely to have strong emotional reactions to begin with. Then, when a traumatic event occurs, their reaction to it, perhaps not surprisingly, is even stronger and more lasting than it might be for other people. On the other hand, traumatic events, especially that occurred early in life, can affect emotion going forward, such that someone who started out as a pretty “happy-go-lucky” person becomes more of a worrier and experiences more symptom complaints along with their post-traumatic stress reaction. Regardless of
which came first–the trauma, or the tendency to experience emotional distress–our data suggest that the two definitely go together, which means that strategies for addressing emotional distress in general may help address symptoms of PTSD, and vice-versa.
We collected ratings of traumatic stress symptoms from approximately half of the participants with non-epileptic seizures. Based on this, everyone reported high enough levels of trauma symptoms to be considered PTSD-level. Perhaps surprisingly, on most of the measures we collected (i.e., measures of emotional distress and dysregulation, as discussed below), people with non-epileptic seizures did not differ from those with PTSD (i.e., PTSD without seizures). The one exception was that those with nonepileptic seizures tended to have more bodily/physical complaints, and, as discussed in a moment, also experienced greater emotional intensity.
Non-epileptic seizures are associated with greater emotional intensity. Participants in our study—along with participants from many other studies–agreed on what pictures were considered “pleasant” (e.g., pictures of cute puppies and babies, flowers and other nature scenes), “neutral” (e.g., household objects, such as lamps and chairs), and “unpleasant” (e.g., scenes of violence, or disgusting images). On the other hand, there were differences in how intense participants judged and experienced the pictures. Those with non-epileptic seizures reported experiencing all of the images—regardless of whether they were pleasant, neutral, or unpleasant—as more intense than the other groups (and participants with PTSD rated the images as more intense than those with temporal lobe epilepsy or
control participants). This was especially true, though, for pleasant and especially “safe” images. In other words, most participants viewed pictures of babies, grandparents, or older married couples as calming images, whereas participants with non-epileptic seizures tended to view those images as more intense.
Given the very high levels of trauma experienced by those with non-epileptic seizures—not to mention the trauma itself that comes from having a challenging medically-unexplained condition—perhaps people and places that most other people would view as safe are in fact not calming influences. This is important to know, because “social support,” or family relationships, friendships, neighbors, or romantic relationships that someone can count on, is very important to physical and mental health. Many of our participants have these types of relationships (and in fact, we had the opportunity to meet these important people in your lives when they drove you to the lab), but they may not provide the same benefits that they do for other people, if they’re not viewed as “safe.”
Trauma is associated with difficulties with emotion regulation. In addition to having greater emotional distress or more intense emotions, those with trauma—with or without seizures–have greater difficulty knowing how to cope with these emotions. Nowadays psychologists think a lot about the concept of “emotion regulation” (and it’s opposite: emotion “dysregulation”). To briefly illustrate this concept, say you are on the bus, and a car comes and cuts you off; there are many ways to handle the situation: the bus driver can drive fast and rear-end the car; he or she can pull over to the side of the road and start yelling and screaming at the car; the driver could take down the license plate number and call in a complaint; or the driver could take a few deep breaths to remain calm, and even make some jokes about it. Some of these options are likely to be more effective than others, both for the bus driver’s own peace of mind, and for the safety of the passengers. Similarly, we all ideally would be able to manage our emotions in ways that help us remain calm, and yet be assertive so as not to “bottle up” the feelings too much. In other words, we would benefit from practicing effective “emotion regulation.”
On the other hand, it is easy to feel “cut off” from one’s own feelings—in terms of not even being sure what you feel—or to bottle them up, or have them explode at inopportune times (or both). These would be examples of emotion dysregulation. Engaging in effective emotion regulation, such as by writing about one’s feelings, finding activities that help you stay calm, or finding someone who you feel comfortable talking about your feelings with, can take a lot of practice.
The challenging part, though, is that the more severe the PTSD symptoms someone has, the more difficult it is to manage emotions. We found this to be true of our participants, and other researchers have found this as well. Again, it’s difficult to know whether trouble with emotion regulation in turn led to worse PTSD symptoms, or whether the PTSD symptoms led to greater emotion regulation difficulties, but regardless, it is particularly difficult for individuals with greater PTSD symptoms (with or without seizures) to be aware of, and pull oneself out of, negative feelings. So, if you are someone who has had a lot of trauma in your life, it may take extra work and practice to develop constructive emotion regulation strategies. The good news, as discussed below, is that it is possible to develop and improve upon emotion regulation skills, and to reduce symptoms of emotional distress as well.
Non-epileptic seizures are not necessarily due to current stress. As we mentioned above, if you are someone with non-epileptic seizures, your doctor may have described these as “stress seizures.” Based on talking with you during extensive interviews, we learned that some of you with non-epileptic seizures said stress does, in fact, aggravate your seizures. As it turns out, this is the case for a lot of people with epilepsy as well. Several of you (with non-epileptic seizures), however, said that you have seizures while you are relaxing. In support of this, we found that current stress was only somewhat related to non-epileptic seizures. Participants with non-epileptic seizures were no more likely to report current stress (e.g., difficulties piling up so high you can’t overcome them) than those with temporal lobe epilepsy or control participants. Therefore, a sense that you have a lot of daily life stress doesn’t necessarily cause non-epileptic seizures (although of course for some people it may certainly be the case that stress makes the seizures worse, or occur more frequently). However, individuals with PTSD did report experiencing more stress on a daily basis. Therefore, we suspect that when non-epileptic seizures are described as “stress seizures,” this may be more about the types of severe stresses that have occurred earlier in someone’s life (i.e., traumatic events), and about the potential difficulty coping with these events (i.e., difficulties regulating the emotions that may arise as a result of such events), than about current stress per se.
Physiology may have some of the answers. Researchers have found that physiology (e.g., heart rate) is often closely tied to emotional reactions. There is some evidence in particular that people who have an easier time regulating their feelings also have a natural pattern where heart rate and breathing are more closely linked (i.e., when your breathing speeds up or slows down, your heart rate does also). This is called “respiratory sinus arrhythmia” and abbreviated “RSA” (unlike the troubling heart “arrhythmias” you may hear about, higher RSA is a good thing). We collected RSA data when you were just resting when you first came to the lab. We found that participants with non-epileptic seizures had the lowest RSA compared with the other groups (followed by the PTSD group). This is important, because it means that even when sitting and resting, physiology is not as calm for those with nonepileptic
seizures. Therefore, interventions such as “biofeedback” or meditation, where you focus on your breathing and on calming your body, may be helpful. Conversely, strategies for managing emotions may be important to undertake, because they potentially can help at a physiological level.

Where do we go from here?

A lot of the above information suggests that if you are someone who has non-epileptic seizures, and/or has had to face upsetting events that are considered traumatic (ones that seem to stick with you), you likely have a lot of emotional distress—and you may not even be aware of this distress. Fortunately, even if you’re someone who has a harder time being aware of your feelings, or pulling yourself out of negative feelings, researchers have found that people are able to learn more effective strategies for coping with intense emotions, just like any other skill. (And again, if you think “I’m fine,” it may be a protective reaction that you learned along the way, but it may not necessarily be protective now, because it can keep you from having an awareness of your feelings—and even though feelings can be overwhelming at times, they also can provide a lot of useful information.)
Cognitive-behavioral therapies, and more recently, “cognitive processing therapy” and “mindfulness”-based therapies, are useful in reducing symptoms of PTSD and even in reducing the frequency of nonepileptic seizures. These therapies may involve: focusing on the “here and now” and focusing on your own body and breathing to remain calm; setting goals and working toward them in small steps; working through past events to understand them, determine what meaning you can take from them, and continue your life in spite of them; and focusing on ways of thinking that are more helpful to you (for example, replacing negative thoughts with ones that prevent you from getting down on yourself, or from thinking in “all or nothing” ways).
Many of you already are working on coping with feelings you have pushed down for a long time. This is difficult but important work, and we commend you for doing it. Knowing how closely linked mental health is with physical health, researchers have found that being able to express feelings in an open and constructive way actually can help reduce physical symptoms or complaints. There is preliminary evidence to suggest this is true for those suffering from non-epileptic seizures. Again, it’s not that the symptoms aren’t real—but they may require intervention through the emotions, rather than through medication alone, or doing nothing.

More questions?

You shared very valuable information with us about your experiences, and again, we are very
appreciative. The above is a description of our initial results, along with a lot of background information.
We will continue to share what we find as we go along.

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