With new advances in understanding PNES, there have been changes in how the diagnosis is explained and what the condition itself is named. The shift, recommended by some professionals in the field, emphasizes the biological aspects of the disorder, removes reference to psychological elements (functional seizures), and seemingly provides a wider foundation for how to access treatment. Although PNES only fits in some respects under the functional neurological disorder (FND) umbrella, there is a growing tendency to squeeze it in there regardless. In some ways, it feels like fitting a round peg into a square hole. Furthermore, the recommended new name and shift in treatment (from psychological to adding in other disciplines such as physical therapy and occupational therapy) appears to be creating some confusion amongst providers and patients diagnosed specifically with PNES (rather than functional movement or speech disorders, for example).
Below is an exchange between a psychologist who specializes in treating PNES in youth and the mother of a patient who she successfully treated some years ago.
The following is an account of a patient, de-identified, and some of the questions I received both from her family and others. A bit of background: this young patient (14 years at time of initial presentation) began experiencing PNES episodes following a move to a new school. This move was brought on by bullying at her old school, as well as some family stressors associated with work changes for her parents. Once she began at the new school, her PNES started and it took approximately one-year to be given the correct diagnosis. In that time, she was in and out of school due to increasingly severe episodes. She struggled to make friends in her new environment and had a number of restrictions on outside of school activities due to concerns for her safety (due to seizures). She was resistant to treatment initially, feeling that when she received the PNES diagnosis doctors were saying “this is all in your head.” It took several months to help her understand the validity of her diagnosis and that her condition could be treated. Despite initial struggles, after several months of treatment her symptoms began to remit. She returned to school and was able to begin playing sports again. This allowed her to form new friendships, and she began to thrive academically. Treatment lasted approximately one year. After nearly two years, her mother reached out again with an update about her condition and questions.
Mom reported: “Patient is doing well! Getting ready to attend college next year. We are thrilled, no PNES in over a year! Occasionally there might be some sensations that remind her of this, but she is able to manage them and recognizes now that it tends to occur most often when she is very stressed. I’m writing because I wanted to let you know that she is doing so well. I have continued to be involved in various chat groups and seek information about the latest research and the diagnosis so that I can stay updated if this should ever come up again. Recently there seem to have been some changes that I don’t understand and hoped you could answer some questions. I see that PNES is now being called something else, I think it is FND? When I looked up FND it said that a lot of other symptoms could happen. This really scared me, is this true? It also said that it could be due to a brain problem, something with the spinal cord or that the nervous system is “faulty” in these people. When she was diagnosed the doctors assured me this wasn’t like epilepsy, but what I’m reading now seems to make it seem like it is? I’m so confused.
My response: “Thank you for reaching out to me and so glad to hear that Patient is doing so well! Let me try to work through your questions as best I can. I understand that this can be quite confusing! To answer your question about the spine: no, there is no evidence that there is an issue in the spine or that there is even an issue with the nervous system. The PNES reaction, is truly a physical reaction of the body struggling with an over-active fight or flight response, i.e. the brain believes that there is a threat so that brain activates the body to protect itself. This isn’t a malfunction, but just a misunderstanding of the brain that something in the moment is dangerous and it needs to activate to protect the person from this danger. This is part of the reason that traumatic incidents, like bullying or other big stressors, can provoke symptoms. The brain becomes overwhelmed by those stressors and then feels it needs to continue protecting the person even at times when they are not in danger any longer.”
Mom’s response and additional questions: “Thank you, this has been my understanding all along, but it was confusing to read several things that seemed to make all of this sound a lot more medical. If this falls under the FND category, is it possible she could develop other symptoms then like paralysis?
My response: “Yes, FND is the overarching category that PNES falls under. Some in the field are now shifting the PNES name to Functional Seizures (FS) in order to show how it fits under this category. To answer your question, it is possible she could have other symptoms, but many who have PNES do not develop any other symptoms of FND. We don’t understand yet why some develop PNES and others have different types of neurological symptoms. What I have found, is that regardless of the symptom presented, when the physical symptoms are managed and the psychological aspects are addressed, the person improves. With understanding of their body, the triggers and what led to these symptoms in the first place, many young people are able to navigate life’s stressors without symptoms re-occurring and impacting their life.
Mom’s response: “I appreciate you sharing this with me. I have been so worried about new symptoms emerging. Can I ask one last question? I’ve seen in some of the chats that people are really focused on the physical symptoms and kind of doing techniques to manage them and then ending treatment. It took Patient a whole year in treatment even though the physical symptoms improved quickly. I feel if we had ended treatment at that point, this would have come back, because she only really seemed better when she started to really work on all the bullying that had happened. It seems like people are not connecting the physical symptoms with some of those psychological stressors that I really felt caused her episodes.
My response: “Yes, I understand that confusion as well. There has been a shift in the field to really focusing on symptom management. Personally, I’ve always seen this as putting a band aide over a big wound. Most of the people I have worked with who have PNES have a history of something traumatic, underlying anxiety/depression or sohat me other significant life stressors. Those experiences have led to ways of coping with life, and the PNES are one form of coping. The body and mind try to do what they can to protect the person from something else that could cause more harm. Without understanding those parts, I also fear that symptoms can re-emerge. My treatment focus continues to be on assisting in symptom management and working on the underlying psychological processes that are at play. I truly see this as the best way to help people navigate this challenging diagnosis.
I would love to hear from any readers about some of the issues that this blog post brings up and as a patient, family member, or clinician what do you think about this FND/FS/PNES issue.