Nicole Rutledge was in her early 20s when the attacks began.
They took two forms. One kind began with dizziness, weak legs, and shakiness. She stared into space as floaters passed by. Her vision clouded, intensifying her disorientation. The second kind was more intense. She kicked and punched. Her back arched and her entire body clenched as she hunched forward, knees to her chest.
The episodes went on for years. The physical signs pointed to epilepsy, a neurological condition that causes seizures and affects some 3.4 million people in the United States. For some time, Rutledge believed that was the cause of her torment.
That turned out not to be the case. An electroencephalogram showed no signs of the changes in brain activity that accompany epileptic seizures. Rutledge was told she had “pseudo seizures,” with the implication that they weren’t “real.” She was told she had the power to change the patterns of attack by exerting her will. People asked, “What can you do to fix you?”
And yet the attacks continued. They were real. And now she knows what to call them.
Suffering from nonepileptic seizures
Rutledge, now 37, suffers from nonepileptic seizures (NES). She experiences symptoms similar to people with epilepsy but her seizures are not triggered by abnormal electrical activity in her brain. The causes lie in a borderland between neurology and psychology.
“In nonepileptic seizures the body is seizing, but the brain is not creating brain waves that can be recorded on an EEG that are typical of epileptic seizures,” said Dr. Laura Strom, associate professor of Neurology at the University of Colorado School of Medicine.
Strom is a fellowship-trained epileptologist who specializes in treating NES, a subtype of functional neurological disorders (FNDs). Functional neurological disorders can include a variety of symptoms, including seizures, tremors, speech and vision problems, paralysis and more. They are classified as disorders that are not consistent with neurological disease after diagnostic workup, Strom explained.
For example, imaging might detect a physical cause for fading vision, like a brain tumor. But in patients with functional blindness, sophisticated brain imaging produces nothing to suggest why the patient can’t see, she said.
“Similarly, EEGs do not measure the brain circuitry disruption that is likely associated with NES,” Strom added.
The symptoms and sources of these disorders may be mysterious, but they are not rare. All told, FND is the second-most prevalent neurological diagnosis, behind only headache.
The prevalence doesn’t mean patients have ready access to treatment. Strom noted, for example, that a nonepileptic seizure diagnosis takes on average seven years because people are often misdiagnosed with epileptic seizures. Strom noted that some patients may be prescribed anti-seizure medications on the basis of this misdiagnosis.
Hard-to-find clinical help for nonepileptic seizures
Nicole Rutledge was among those misdiagnosed and misunderstood. But she has finally gotten help for her NES from the FND Clinic at the UCHealth Neurosciences Center – Anschutz Medical Campus. Strom is medical director, with a team that includes a psychiatrist, a licensed clinical social worker, a nurse practitioner, physician assistants and staff. They provide a blend of neurologic and psychiatric care that aims to help NES patients understand and manage their disorder.
The roots of NES run deeply in a patient’s physical and psychological makeup. For example, the FND Clinic estimates that 10% to 20% of NES patients also have epilepsy. Far more significant, however, is the role of trauma in driving the symptoms. Three-quarters or more suffer from post-traumatic stress disorder (PTSD) and anxiety disorders tied to physical or emotional trauma, the clinic reports. The ongoing psychological stress disrupts the brain’s normal communication with the rest of the body, producing unpredictable results.
Strom compares it to a “network problem” that intermittently scrambles signals on a computer system. Thus an EEG that rules out epilepsy is not a conclusive diagnosis but rather the first step in helping patients cope with their disorder.
“You can’t measure an NES with an EEG, but I can tell you that you aren’t having an epileptic seizure,” she said. “So let’s get to the root issue.”
Neurologic and psychiatric teamwork
Care at the FND Clinic starts with an intake with a neurologist to evaluate the patient’s concerns. “The primary goal of this consultation is to confirm the diagnosis of NES by reviewing prior diagnostic tests, including EEGs, and other relevant medical history details,” Strom said.
Then a neurologist goes over EEG results, explains NES to the patient, gathers other relevant details of their medical histories, reviews this information with the patient, and allows space to explore any questions about the diagnosis.
Each patient also receives a behavioral health evaluation. Providers and patients work together to create a treatment plan.
Reassurance that symptoms are real
In most cases, that includes six weeks of cognitive behavioral therapy-based educational group sessions led by providers in the clinic. The sixth week brings family members into the group session. Patients then have three-month and six-month follow-up sessions with one of the clinic behavioral health providers.
Some patients, including Nicole Rutledge, also participate in an additional 12 weeks of group therapy, with a focus on helping patients understand the triggers for their seizures and ways of recognizing and managing them.
The 12-week sessions help patients find the factors that may be contributing to their nonepileptic seizures, said Abbie Pennetti, the clinic’s licensed clinical social worker, who co-leads the group therapy with Dr. Randi Libbon and a psychiatric resident.
“Maybe they start to notice a relationship between conflict in their home environment and how that might help to trigger a seizure,” Pennetti said. “Understanding where the difficulties came from can help them to understand the components of a solution.”
Pennetti said that a key component of the group therapy is reversing messages of doubt many NES patients have received for years. A stubborn societal stigma about mental health complicates the challenge, Pennetti added.
“Sometimes they have had so much damage done by providers and family members telling them that this is something they can simply control, or that they just have to stop being so stressed, or that they are faking, or that they need to snap out of it,” she said. “They may start to believe those things. We let patients know that we believe them and their experience and that what they are experiencing is devastating and life-altering.”
Finding ways to cope with and manage nonepileptic seizures
Patients drive the therapy sessions and have full control over what they choose to share and how. Pennetti said the goal is not to focus only on the specific details of an individual’s trauma – a physically abusive relationship, for example – but rather to explore its effects and the factors that may lead to seizures. She compared the approach to centering less on a stone dropped in a lake than on the watery waves that result.
“Our focus is on how the effects of trauma have rippled through their lives,” Pennetti said.
The sessions also aim to help patients find new and positive tools to cope with their NES. Pennetti said solutions might include journaling, mindfulness, deep breathing, speaking out on their frustrations, and so on. But there is no single answer for a complex disorder with many contributors, she stressed.
“The best solutions come from the patients themselves,” she said, adding that working with them in group therapy has been personally transformative.
“They show an immense amount of empathy for each other,” Pennetti said. “The work has helped me to understand what they need and given me so much knowledge.”
A combination of challenges
Rutledge can attest to the knotty challenges of NES. For her, the seizures are not an isolated problem, but rather part of a constellation of issues that include chronic migraines and other headaches, intertwined with trauma and mental health challenges.
She grew up in Loveland, where she still lives, and graduated from Colorado State University with a bachelor’s degree in political science. Rutledge was accepted to the University of Wyoming College of Law, but two months before her graduation from CSU, she had surgery to remove a fibroid tumor in her uterus.
The prospect of surgery was in itself traumatic, as there was a strong chance she would not be able to have children while still in her early 20s. But the actual surgery compounded the stress. Because of a mistake administering spinal anesthesia, Rutledge said, she woke up in severe pain during the operation. She also developed a chronic cerebrospinal fluid leak that went undetected for a lengthy period.
Following the surgery, her health began to deteriorate rapidly, including the seizures she believed were epileptic. She was also plagued by severe headaches. She tried part-time work as a tutor and briefly as a census-taker, but she has been disabled since 2010.
Complicated origins of seizures
Rutledge’s experience illustrates the difficulty of tracing the origins of an individual’s NES. She sees PTSD from the fibroid tumor surgery as an igniter of the seizures, but believes childhood trauma, including losing five close family members and friends when she was 15 years old, also contributed. She also endured a turbulent marriage that ended with her ex-spouse imprisoned for murder.
She points to the doubt she faced from others when she learned her seizures were not epileptic as particularly painful.
“It hurts when somebody says, ‘Don’t you know that’s a fake seizure?’ That’s after I’ve been convulsing, with my hands clenched, my throat hurting and my entire body sore and tired, and that’s all I know that happened.”
Rays of hope after years of frustration
After years of dealing with the frustration and depression of her condition, Rutledge said she was skeptical when a psychologist suggested that she contact the FND Clinic. But after completing the treatment plan, she said she has a new measure of hope for coping with and managing the seizures.
“I’ve learned more and understood that I’m not crazy. That’s a huge relief to be taken off my shoulders,” she said. “The therapy has brought up past traumas, but I now know more about the seizures.”
Rutledge said she’s learned to identify particular triggers for her seizures, such as loud, sharp, high-pitched noises, crowds, and overstimulation (trips to Walmart are out of the question). She has also learned techniques for warding off the attacks, including meditation, biofeedback, and especially deep breathing.
She said the group sessions at the clinic were also very important, adding that several of her fellow 12-week session members still connect every other week by Zoom.
“It’s wonderful to be in common units of people who have had similar experiences and feelings,” Rutledge said.
Motivation for recovery
Her most powerful drive for recovery comes from a person she regards as a miracle. After the devastating fibroid tumor surgery, Rutledge believed she would never have a child. But against the odds, she gave birth to Rowan, now seven years old. She said her work with the FND Clinic has helped to ease her fears of raising Rowan while battling seizures.
“I now feel confident of being alone with my child,” Rutledge said. “I have learned coping techniques to keep me better able to function in my household routine and in my life with my child and being able to raise [him].”
After long periods of living as a self-described hermit, Rutledge said she welcomes “getting back to life.” She acknowledges that the seizures and headaches are still a concern, and she remains unable to work. “But the seizures don’t rule my life as they used to.”
Strom said she believes the FND Clinic has helped people like Rutledge reduce the number of seizures, avoid emergency department visits and improve their symptoms of depression and anxiety. The causes of their distress may not be apparent, but the effects on their lives are, she added.
“These are real patients with problems that are highly associated with trauma,” Strom said. “They need tender loving care.”