Each year, about 20% of the 70 million people assessed in epilepsy clinics have seizures that cannot be identified by any physical cause in the brain. The problem, which usually begins in adolescence or adulthood, is known as functional seizures – also known as non-epileptic psychogenic seizures – and it’s a diagnosis that is debilitating for most people. patients and their families, according to an expert from the University of Alabama at Birmingham. .
Functional seizures are a type of functional neurological disorder, or FND, also called conversion disorder. This means “any neurological symptom inconsistent with a known medical or neurological diagnosis,” said Aaron Fobian, Ph.D., associate professor in the Department of Psychiatry and Behavioral Neurobiology at UAB Marnix E. Heersink School of Medicine.
Fobian has developed a promising treatment for functional seizures and has just received a multi-million dollar grant from the National Institutes of Health to conduct the largest randomized controlled trial of any functional seizure therapy in children.
But first, she often has to help clarify the diagnosis for her patients and their relatives, pointing out that functional seizures are real and quite common. Patients are usually referred to the epilepsy clinic by their primary care physician. “If they are diagnosed by a doctor who says the seizures are epileptic, it’s often confusing when another doctor tells them it’s a functional disorder,” said Fobian, a clinical psychologist. specializing in the care of pediatric and adolescent patients.
“The functional disorders are very real, but sometimes the diagnosis is communicated in a way that makes it seem like the health care provider doesn’t believe there is something wrong or think there is something wrong with it. the patient pretends. There is a lot of stigma attached to this diagnosis. It’s a lot more common than you might think, but you never hear about it.
In fact, functional seizures are as common as multiple sclerosis and Parkinson’s disease, the Stanford University authors note in a 2016 article. The gold standard for diagnosing a seizure is a video EEG, or EEG. If a patient has a seizure but it does not produce a characteristic change in the EEG, epilepsy specialists will diagnose functional seizures. But it often takes years for a patient to get an accurate diagnosis confirmed by EEG, the Stanford researchers note, during which “unnecessarily aggressive treatments for epilepsy can lead to excessive sedation, intubation and placement of the patient. ‘a vagus nerve stimulator. In a follow-up study, 44% of patients with functional seizures performed poorly (defined as not seizure free and remaining dependent).
And as Fobian noted in a recent journal article, “the quality of life of patients with functional seizures is very low – and generally lower than that of patients with epilepsy.”
“We can give you control”
At UAB and Alabama Children, pediatric patients diagnosed with functional seizures are referred to the Fobian clinic. A fairly typical case is the 18-year-old white patient described in a 2021 article published in the journal Epilepsy & Behavior Reports by Fobian and Jerzy Szaflarski, MD, Ph.D., professor and director of the Epilepsy division in the Department of Neurology.
The patient had been referred to Fobian with a diagnosis of functional seizures. His seizures exhibited a variety of symptoms, including loss of consciousness, twitching, memory loss, temporary blindness, crying and laughing. She had been suffering from seizures for four years at that time; they were currently performing every week for 10 days and lasted for about an hour. Triggers included stress, interacting with her mother, and separating from friends or boyfriend after spending time together. She was currently unable to attend college or work due to the seizures. She had tried several different therapies that “focused primarily on treating depression and her history of significant trauma, which resulted in little improvement” in her functional seizures, write Fobian and Szaflarski.
That is, until the patient participates in a unique form of therapy developed by Fobian. Known as Rehabilitation and Control Therapy, it targets expectations of catastrophic symptoms by providing patients with a novel biopsychosocial cognitive model and targets feelings of control “using habit reversal techniques, a behavioral principle used for patients. tics in Tourette’s syndrome, ”Fobian said.
“The idea is that you are making the opposite physical response that is preventing you from having the symptom,” she said. “The majority of patients can tell when an episode is happening. They start making these opposite responses to prevent the onset of an episode. This is a learned reflective response, and new learning can suppress old learning. Patients do not feel that they have control over functional seizures; but we say to them, ‘You’re re-exercising your control over this.’ The therapy is adaptive, with weekly training and goals based on the patient’s individual responses to treatment. “Functional seizures are generally not a universal condition,” Fobian said. “We can optimize the treatment based on their response. “
“The most rewarding thing I can do”
“After the first ReACT session, she said she was able to prevent the onset of two functional seizures,” write Fobian and Szaflarski. “After eight sessions, she had no functional crisis for 3.5 months. She then experienced four functional seizures over a two week period, followed by complete functional seizure remission for at least six months. In her last treatment session, she was driving independently, enrolled in college, had a job, and was about to move into her own apartment.
“It’s the most rewarding thing I can do as a psychologist,” Fobian said. “These patients are incredibly distressed and we are helping them get better. They can drive again and live their lives free from stigma and fear. There are certain situations where it can reappear, but we can prepare them in case it does. “
Pilot success leads to significant subsidy
In a pilot study published in August 2020, ReACT “resulted in a significant decrease in functional seizures in children, even in the absence of decreased symptoms of anxiety or depression,” wrote Fobian and his coauthors. This is the only pediatric randomized trial of pediatric functional seizures to date. Of the patients who participated in ReACT, 82 percent remained seizure free for more than two months. The power of therapy was evident in the efforts patients and their families were prepared to make to seek treatment. “My patients come from all over – the Mississippi, the Florida Panhandle,” Fobian said. “In the pilot study, two of the first three patients traveled to UAB from the Gulf Coast every week for the chance to participate.”
In July 2021, Fobian received a multi-million dollar R61 / R33 grant from the National Institute of Mental Health that will enable an expanded randomized controlled trial of therapy in children diagnosed with functional seizures who are between 11 and 18 years old. year. In the first phase of the study, participants will participate in 12 ReACT sessions. Before and between some of these sessions, Fobian will measure participants’ sense of control, catastrophic symptom expectations and stress levels using questionnaires and responses to a challenge in which they hold their hand in water. cold for up to three minutes. In the second phase of the study, participants will be randomized to receive ReACT or supportive speech therapy, with results – number of seizures experienced – recorded for each group for up to six months after treatment.
No current treatment for the root cause
Functional seizures do not respond to anti-epileptic drugs – or many other things. There is currently no evidence-based treatment for the root cause of pediatric functional seizures, nor any component of pediatric NDF, Fobian said.
“We know drugs don’t work. People say that “cognitive behavioral therapy works,” but CBT isn’t just one thing – many types of therapy are called CBT. “
Some examples of the types of CBT available include cognitive processing therapy, cognitive therapy, dialectical behavior therapy, rational emotional behavior therapy, self-learning training, and stress inoculation training.
“Which of them is effective? Said Fobian. “The only fully fueled trial of CBT as a treatment for functional seizures involved adults and did not reduce functional seizures 12 months after treatment compared to usual treatment. We have seen this with drug trials in adults as well. If you give patients antidepressants their mood improves; but their crises do not.
However, many patients find that their seizures continue to occur. They are unable to attend school or work, or drive themselves. Patients with functional seizures “have levels of disability similar to those of patients with epilepsy,” the Stanford researchers note. Functional crises have “been reported among all races and ethnic groups around the world. The “attack of nerves” in the Hispanic population and the “fall” in the black American population are cultural variations “of functional seizures, according to the researchers.
As the evidence for the effectiveness of ReACT therapy accumulates, Fobian hopes to establish an interdisciplinary clinic for patients with FND at UAB. “During the COVID pandemic, we had an explosion of FND referrals,” Fobian said. “Some of these factors may be related to increased awareness and attention to physical symptoms during COVID-19; but you’re also seeing a flurry of seizures and tics posts on TikTok, and TikTok has really taken off with teens during the COVID shutdown.
“We already meet monthly with physiotherapists, occupational therapists and speech language pathologists who deal with this problem,” said Fobian. In October 2021, Fobian received a two-year grant from the General Endowment Fund of the University of Alabama Health Services Foundation to establish an interdisciplinary functional neurological disorder treatment clinic and develop a clinical care pathway. for the FND at UAB. “This path of integrated clinical care will guide the treatment of patients with NDF from the moment they arrive at the hospital,” said Fobian.