Non Epileptic Seizures

Could Prolonged Exposure (PE) therapy be useful in treating psychogenic non-epileptic seizures?

Lorna Myers — Mon, 29 Apr 2013 15:22:00 +0000

Up to 90% of patients with psychogenic non-epileptic seizures (PNES) report histories of significant trauma (often childhood sexual and physical abuse). If we compare with control groups and the general US population, we find that in fact, patients with psychogenic non epileptic seizures have suffered more abuse than these other groups. As for post-traumatic stress disorder (PTSD), studies have reported percentages of patients with both PNES and PTSD that range anywhere from 22-100%.

Our group recently wrote up results based on a study of 61 of our patients with PNES. This is now in press (preliminary title:Psychological trauma in patients with psychogenic non-epileptic seizures: Trauma characteristics and those who develop PTSD) and may be coming out this year in Epilepsy and Behavior.

We looked carefully at our patients’ histories, including trauma details and gave out self–report forms including an inventory of personality functioning and another one that measures a variety of trauma symptoms. We found a history of trauma in almost 3/4s of the group and a substantial number of these received a diagnosis of post-traumatic stress disorder (PTSD). This is an exciting finding for those of us who treat PNES because there are a few well researched therapies for PTSD that could prove useful.

Probably the most empirically validated treatment for PTSD is prolonged exposure (PE) therapy which is a type of treatment that has been researched extensively and has been found to be a highly effective treatment for PTSD. PE is a combination of behavioral and cognitive treatment that targets the most resistant symptoms of PTSD. The PE theory is simple to understand (although the treatment itself requires a trained professional): extreme trauma teaches the survivor that in order to remain safe many dangers in life need to be avoided. Avoidance becomes a big part of the survivor’s life (e.g. avoiding men who look like the person who committed the crime, being home alone like when the attack occurred, not wearing a certain type of dress, etc.). The list of things that are avoided to ensure safety can be endless and may grow in time. Avoidance behaviors and beliefs about the dangers of the world keep the trauma strong and unchanged. The logical answer to counteract this is to stop avoiding and start facing that which is feared. Note: this is not something that should be done on your own or outside of the structure and safety provided by a trained therapist. Also note: prolonged exposure (PE) is not an easy treatment and requires that you walk into it motivated to get better and ready to do a lot of work in session and a lot of homework.

The next step would now be to offer PE to patients with PNES and PTSD and see the effects of this.

Psychogenic non epileptic seizures: are all patients diagnosed with PNES alike? Are there differences?

Lorna Myers — Tue, 02 Apr 2013 19:23:10 +0000

In order for psychotherapy to have any chance of working, the psychologist needs to have targets to work on and goals for change. The most obvious goal for change in PNES is for the behavioral episodes (i.e. non-epileptic seizures) to stop. In reality, there are a number of other important goals in treating PNES but this is by far the most visible one.
Treatment targets on the other hand are many and will vary depending on the patient’s individual characteristics, personal history, and social environment. In my opinion, this is where important differences appear.

Over the years, our PNES program at the Northeast Regional Epilepsy Group has selected a battery of tests and surveys that help us better understand our patients. It is for this reason that our neuropsychologists administer a very select group of psychological measures. Results from these measures can then be introduced into the treatment design itself by our psychotherapists to establish target problems by priority and can also then be tracked through repeat testing to see if changes are taking place.

The main problem areas we measure include:
Trauma symptoms
Depression
Anxiety and somatic (physical) complaints
Anger expression
Ability to read emotions accurately (alexithymia)
Strategies to cope with stress
Quality of life

In the past 10 years, we have fine-tuned the battery of tests and will most likely continue to make changes as new questions arise and new measures are published. I welcome other professionals working with PNES to contact me so we can go over the measures that we use at the Northeast Regional Epilepsy Group in more detail and to hear what else is being administered elsewhere. I also welcome comments from patients who have feedback to give on what might be other targets to look at that we have not identified yet.

Psychogenic non-epileptic seizures webinar in 2013-differences in opinions

Lorna Myers — Sun, 24 Feb 2013 15:20:57 +0000

About ten days ago I announced that we will be offering a psychogenic non-epileptic webinar in September of 2013. I received incredibly positive responses from patients, family members and a number of health professionals. But I was surprised to receive some unhappy comments from others in the medical profession. Today’s blog talks about some of the points that came up.
One comment expressed unhappiness with the change of the name of the disorder itself, lamenting that we don’t still use the term “Pseudo-seizures.” I had thought that this topic was understood by now by professionals who work in the field of epilepsy and who encounter patients with PNES on a regular basis, but I guess not. It was suggested by the physician who complained that by changing from pseudo-seizures to PNES we were somehow “sugar coating” the diagnosis to calm patients’ anxieties and if so, why not also change the term “cancer” too. Let’s see if we can clear up this confusion. When someone is diagnosed with PNES many suffer from others (e.g. family, medical professionals, friends) suspecting that they are “faking.” It is for this reason that the use of “pseudo” when naming this particular condition is especially harmful. We have discussed in previous blogs, that a name carries much weight and can impact the way in which the patient is perceived and treated. This change in terminology was not made to be politically correct or to “sugar coat” anything. It was made in order to be more precise and avoid harming those we are trying to help. Healers first and foremost should aim to heal rather than hurt.
Another comment was strongly opposed to a suggestion I made that professionals should take the feedback of patients into account when naming a disorder. Why wouldn’t we? It is after all your condition, you live with it, why not be permitted to speak up about it? If countless patients are reporting that the term pseudo-seizures is adding to their suffering, what do we gain by digging our heels in and insisting on its continued use? This is a psychological condition so we need to be prepared to communicate with our patients. The patient and the professional are partners. Perhaps this is novel for some –a shift in paradigm, but especially in psychology this is really something you need to be prepared to do at times.

Psychogenic non epileptic seizures: treatment for psychogenic seizures

Lorna Myers — Sun, 13 Jan 2013 16:42:29 +0000

In the field of psychogenic non-epileptic seizures, there are two “million dollar questions.” One is: Why do you develop seizure-like episodes and not some other stress-related symptoms? Is it something about your history (i.e. types of trauma), your physiological make-up (i.e. tendency to be hyper-sensitive), is there something neurological (something about the way your brain functions)? Is it all of these and more or none of these? We are still working on answering this.
The other key question is: how can we best treat PNES, how can we help you get back to health?
Currently, cognitive behavioral treatment (CBT) is being used and tested with psychogenic seizures and it looks promising.
But because people with PNES are not all the same I wonder if one size fits all or if we need to tweak it and tailor-make it? I suggest: 1) let’s first really understand what stands out as problematic for the patient and 2) provide treatment that directly targets these issues.

In our group, before treating we test and one of the things we test for is: anger. Why? Because we have seen that many patients with PNES have difficulties expressing anger (not being assertive, or blowing up out of context, or percolating with anger about things past and present). Why is this important? Anger seeps into a patient’s level of tension, physical health, quality of life and social relations. Anger provides an identifiable and modifiable target for psychotherapy. It is potentially a goldmine for therapy.

Last year we published an article. We looked at 62 patients who were diagnosed with PNES and found a significant correlation between high anger trait, “cynicism” and low quality of life. These results suggested to us that anger expression has a role in the reports of diminished quality of life in some patients.
Extremes in anger in patients with PNES are not surprising; descriptions of being brought up by adults who did not provide healthy modeling of anger expression are common. Many of our patients have been abused and are angry about this. Others are angry at their present situation.
Angry feelings that are not successfully dealt with can lead to physical and emotional problems.
So to answer the question: how can we best treat PNES, how can we help you get back to health? For those who have severe issues with anger, this looks like a good target.

Psychogenic non-epileptic seizures: what is neuropsychology showing us?

Lorna Myers — Mon, 05 Nov 2012 17:25:21 +0000

In December of 2012, the neuropsychology team from the Northeast Regional Epilepsy Group will present some interesting early findings about patients with psychogenic non-epileptic seizures as compared to patients with epilepsy.
The study compared executive functions (planning and organizing, problem solving, attention, working memory, mental flexibility, set shifting) in patients with psychogenic non-epileptic seizures (PNES) and temporal lobe epilepsy patients (TLE). In order to make sure that everyone who was included made a good effort we removed those who did not pass a test that looks at symptom exaggeration from our analysis.
Deficits in working memory and executive functioning have already been reported in patients with psychogenic seizures (Chapman et al., 2011). Other studies have also reported executive function and working memory deficits in temporal lobe epilepsy (Stretton J & Thompson PJ, 2012). We wanted to look at whether those with a diagnosis of PNES presented with problems in executive functioning that were similar to those with temporal lobe epilepsy. We thought they might but needed to verify it and in order to do it, we gave both groups of patients a battery of tests that assessed different types of executive functioning. We had 97 patients with PNES and 89 patients with temporal lobe epilepsy.
We found that a similarly large number of patients with psychogenic non-epileptic seizures and temporal lobe epilepsy had weaknesses on tests of executive function. Eighteen to 23 percent of patients with PNES and 22 to 30 percent of patients with temporal lobe epilepsy earned below normal scores on all three executive function subtests. These findings are intriguing and support that future studies to continue to explore these issues and new studies to check that this finding comes up again are needed. Future research should also explore what might be contributing to these problems in both of these patient groups.
The title of this poster is: (Abst. 1.301)
COMPARISON OF EXECUTIVE FUNCTIONS IN PATIENTS WITH PSYCHOGENIC NON-EPILEPTIC SEIZURES (PNES) AND TEMPORAL LOBE EPILEPSY (TLE) AFTER CONTROLLING FOR MALINGERING

Psychogenic non-epileptic seizures: stigma and strength in numbers

Lorna Myers — Mon, 24 Sep 2012 11:59:27 +0000

A few months back I wrote on my Navigating Epilepsy Blog about stigma in epilepsy. I’m writing on the same topic with regards to psychogenic non epileptic seizures because non-epileptic patients face this kind of stigma too.
What is stigma?? According to www.dictionary.reference.com, it’s “a mark of disgrace; a stain or reproach, as on one’s reputation.”
We just need to look through history books to see how mental health has been mischaracterized (stigmatized) for hundreds to thousands of years. It was not that long ago that mentally ill people used to be placed in separate buildings-with lepers, criminals or other “untouchables.” Some of the famous asylums in Europe would keep patients chained to the walls for years on end without even providing a toilet and putting on shows with some of the more volatile patients that the public paid to see. So, of course, the image of mental illness became more and more degraded and shunned.
A person who is stigmatized often ends up being seen as less intelligent, is looked down on and may be locked up. They may be considered contagious, evil, or dangerous. If there is enough social pressure from the community, the person who is being stigmatized may end up “self-stigmatizing” (e.g. being convinced that you are in fact unlovable, unable to be independent, to work, to parent, to live life fully, that you are somehow flawed and worthless).
The society’s prejudices about mental illness can turn into real restrictions of civil rights (i.e. voting, parenting, living independently, forced sterilization), as well as, negative media portrayals suggesting a connection between violence and mental illness.
An important number to keep in mind is that mental illness actually affects many, many people. The Kim Foundation (http://www.thekimfoundation.org/html/about_mental_ill/statistics.html) reports that “an estimated 26.2 % of Americans ages 18 and older or about one in four adults suffer from a diagnosable mental disorder in a given year.” So, about one in four fall in this category at some point in time. As for psychogenic non-epileptic seizures, an article from the year 2000 by Benbadis and Hauser reported: “The prevalence of psychogenic non-epileptic seizures is somewhere between 1/50 000 and 1/3000, or 2 to 33 per 100 000.” The more we are aware of just how large these numbers are, the more confidence we should feel when fighting stigma and ignorance against mental illness and against psychogenic non-epileptic seizures in particular.
Fortunately, these misconceptions are beginning to change as the public becomes more educated. An excellent source of reputable information and resources can be found at the National Institute of Mental Health (http://www.nimh.nih.gov/index.shtml).

Talking about Psychogenic Non Epileptic Seizures in Colombia (South America)

Lorna Myers — Sat, 18 Aug 2012 16:42:37 +0000

Earlier this month, I had the pleasure of being invited to Colombia with two of my colleagues from the Northeast Regional Epilepsy Group to the XVth National Epilepsy Congress. I was asked to speak about psychogenic non –epileptic seizures and in today’s blog I would like to share the experience with you.
The congress was held in coffee farming land in Colombia-the land of Juan Valdez. The countryside is beautifully green and alive with nature including flurries of hummingbirds that can be seen going from one exotic flower to another all day long. The congress organizers-Dr. Orlando Carreno and Claudia Carreno as well as Neurocentro put together a wonderful program.
During my presentation on psychogenic non epileptic seizures, I spoke to a room of health professionals about how we diagnose PNES at the Northeast Regional Epilepsy Group including the importance of Video-EEG monitoring. I also went over the battery of neuropsychological tests we use to measure memory, attention and concentration, language and emotional complaints. A lively discussion took place between one of the Colombian neurologists in the audience and myself. He shared that the main problem he faces (and that others face too) at this point is that there are not enough Video-EEG monitoring units where he works in Colombia. This is of course a huge obstacle that needs to be addressed first before much progress can be made with treatment options for psychogenic seizures.
Despite some of the limitations, we were very happy to meet a young neuropsychologist who had already started making arrangements to come to the US to observe Neuropsychology at work. Obviously, it made great sense to figure out how for part of his trip could involve coming by our offices in New York and New Jersey to observe testing and treatment options. This may not be the same as helping to finance video EEG monitoring equipment, but we’ll start with what we can and hopefully keep moving in the right direction.
We returned feeling energized and excited. It pleases us tremendously that we will have the chance to collaborate with other like-minded professionals. More updates on all of this will follow.

Anxiety and psychogenic non-epileptic seizures

Lorna Myers — Sat, 14 Jul 2012 17:11:56 +0000

Anxiety is a serious problem for most patients who have psychogenic non epileptic seizures.

Why? Genetics and environment are both likely contributors. Anxious traits can be inherited. In addition, having experienced a painful history (which is common in most persons with PNES) that was not successfully dealt with leaves many with PNES poorly equipped to deal with day to day problems and stress. The stress of daily life acts as a frequent trigger of anxious feelings. To make things worse, when someone feels fear, nervousness and emotional tension their problem solving skills and logical thinking go down. This leaves the person further stuck and unable to find a way out which only deepens the anxiety and can worsen psychogenic non epileptic seizures.
This is why one of the main targets of PNES treatment is anxiety and its outgrowths.

Sometimes, patients with PNES cannot clearly identify the source of their anxiety or even more surprisingly, are not even aware of being nervous.
So, how would someone know if they are anxious and if the anxiety they are feeling might require professional treatment?

Physical signs of fear and anxiety:
Dilated pupils
Dry mouth
Rapid and shallow breathing
Rapid heart rate
Blood pressure may go up
Slowed stomach and intestinal activity
Sweating

Emotional signs of anxiety:
Nervousness
Restlessness and fidgetiness
Irritability
Fatigue
Tense muscles
Poor sleep
Poor concentration
Shakiness, tremors and feeling unstable

If you recognize these signs in yourself, this is something to discuss carefully with your therapist or psychiatrist now or when you start treatment. Keep in mind that your doctor will be checking whether this is due to anxiety or another condition.
There are several medications and psychotherapies that can be used to treat anxiety and working on these symptoms and what keeps them around is a way of actively working on your PNES.

Psychogenic non epileptic seizures (PNES) can disrupt life in a multitude of ways

Lorna Myers — Fri, 29 Jun 2012 11:48:14 +0000

Some think that because psychogenic non epileptic seizures are “psychological” that they somehow have less of an impact on life. But for many who have PNES, it can feel like a prison (see picture of handcuffs).

PNES has some very real emotional and physical effects and the potential to affect the finances and independence of the patient in a multitude of ways.

The unexpected nature of the psychogenic events can result in a steady withdrawal from activities as the patient doesn’t know when or where the event will occur. The loss of driving privileges is a real possibility if the episodes have the potential of endangering the driver or others.

Patients frequently share with me that they fear having a seizure-like episode in an uncomfortable (i.e. a dinner party or at a mall) or unsafe situation (i.e. while going down stairs). Others’ reactions are often also a motive for concern for patients who would prefer not to have an ambulance called or “not to cause a stir.” Independence can be steadily lost as it sometimes becomes necessary to have someone take the patient everywhere. Families may not know how to react to these episodes which further distresses everyone involved.

The emotional reaction to these major changes can be growing sadness, hopelessness, frustration, and loneliness.
The physical results of having PNES is often a decrease in physical exercise and fresh air as well as needing to take greater care in some cases to avoid sustaining an injury. Depending on the severity of the episodes, some patients may undergo costly emergency room visits and medical procedures. Even the loss of job may occur if events take place at work or if it becomes too difficult to travel to work.

And yet despite these very real and profound impacts that PNES can have on someone’s life, there continue to be too few treating doctors and mental health professionals who can work with this group of patients.
What we need is an organized network of professionals who can systematically research the condition and treatment options as well as train future treating professionals.

Psychogenic non epileptic seizures and anger: target for treatment

Lorna Myers — Fri, 25 May 2012 15:23:40 +0000

Research shows that a very high number of persons with PNES have suffered abuse in the past (see past blog posts). And experiences of abuse go along with distress and fear. So, PNES is commonly seen as fueled by anxiety and fear by clinicians.
However, I am sure you have heard of the “fight or flight” response that gets activated when we encounter danger. This response ensures that our body and brain get ready for evasive or hostile action to allow us to survive. Flight ties in with the emotion of fear. Fight ties in with the emotion of anger.
Both these emotions are necessary to ensure our survival and are useful throughout our lives. However, when they become overactivated and can’t come down even when the threat is long gone, we have a problem.
PNES is likely fueled not just by FEAR but also ANGER.
My patients often explain to me that they see themselves as “angry” and needing to control themselves so as to not explode or become overly emotional. But in order to control this anger and avoid a blow up, they often end up allowing others to ignore their needs or steamroll their rights. Logically, this only leads to more anger, resentment and frustration.
By bottling up anger you miss the potential value that anger has in the first place which is to alert you about something and defend you. There is another option to 1) explosive anger or 2) bottling up anger; the option is becoming ASSERTIVE. A person who is assertive is not a violent person. Assertiveness is being able to speak up for your rights, for your needs, ask for clarification, be persistent, and disagree. It takes practice but the good news is that you CAN learn to be assertive and studies have shown that it can improve your interpersonal life, your self-esteem, and your quality of life. Defusing lifelong habits and replacing anger suppression or explosion with assertiveness and anger management are important therapy goals for PNES patients.