Functional Neurological Disorders are not FUN

I have the darnedest time finding referrals locally for therapists who treat Functional Neurological Disorders (FND). Clients who have these diagnoses seem to be stuck in a desert between neurology and mental health. Neurologists often shrug and say, “You need a therapist for this,” while therapists often say “neurological? That’s definitely out of my scope!”

So what are FNDs? Functional neurological disorders are defined by the presence of neurological symptoms with no identifiable disease process to explain the symptoms. Patients with FNDs have often had extensive medical workups to look for electrical, chemical, structural, or other medical causes. Once enough tests come back as “normal,” but apparent distressing neurological symptoms remain, FND is diagnosed.

I find that a lot of neurologists (sorry, friends) kind of shrug at this point and refer to mental health. That’s fair - I know doctors are super busy. But there are some possible interventions to consider that only medical folks can offer. These might include medications to help with sleep, pain management strategies, and mental health medications. Physical therapy, occupational therapy, and psychotherapy, can all help too.

Let’s jump into the deep end of the pool, together

When I first encountered FND in my practice, I didn’t know much about it. I tried to find an expert to refer to but came up with no one in my local area. I was still an Associate therapist under supervision and the supervision and consultation I received pointed me to trauma as the cause of FNDs. I dove into that material and made some honest efforts to approach FND from a trauma-focused place. This seemed painful for clients and not particularly helpful. Focusing on other things and trans-diagnostic interventions seemed to make the FNDs less symptomatic. Since FNDs are relatively rare, it can be years between cases so it was awhile before I could try again.

When I next encountered FNDs, I was a much more experienced and confident behavioral therapist with many more connections to experts across the country to consult. I was no longer convinced that trauma underlies everything (even though most people have trauma and we must be trauma-informed). I started to see FND as a complicated, involuntary stress response, much like an stress-induced headache or shoulder knots. YES these experiences are SO REAL and physically observable, but they also are related to anxiety, stress, sadness, and other emotions.

So, what do we do for FNDs in a therapy practice?

First, I want to make sure that the client’s medical team has declared these unwanted and distressing experiences, FNDs, before we treat them as such. I can’t tell you how many people come to my practice having been diagnosed with various fairly rare conditions, without the proper workup for said condition. I’m not a doctor so I’m not supposed to tell people that their medical care wasn’t adequate. But if my client hasn’t had the tests I often see doctors do, I will try to ask the medical provider themselves or have the client ask, “is there anything else to investigate?” Or, “Are you feeling like you’ve exhausted reasonable medical possibilities and this is best described as a functional neurological disorder that would benefit from psychotherapy?”

Second, I want to thoroughly understand the pattern of what leads to each FND episode. This can be frustrating and take awhile because I listen to a lot of stories of what clients and/or their families remember from before, during, and after each episode. We may use tracking tools, diaries, etc. to begin to develop awareness of the circumstances more likely to be associated with an FND episode. We then look for patterns to determine what variables contribute.

Third, we’ll go over general life habits that raise or lower the client’s baseline stress level. We’ll look at sleep habits, exercise, eating habits, phone/screen habits, and explore ways to bring down their overall anxiety level. If we need a dietician or exercise pro, or occupational or physical therapy, they can also help us here.

Fourth, with the possible help of OT or PT, we’ll think through some risk reduction ideas of how to reduce the risk of episodes happening at critical times. Patients’ neurologists have generally already talked with them about this and clients might already be on very restricted activities due to the fear of seizures. We’ll explore how to be safe, but also engage in as many activities each day as possible.

Fifth, we’ll explore hypotheses about how to address not only baseline stress, but stress, anxiety, and other painful emotions as they build towards FND episodes. Once we know the pattern, lower baseline stress, and have some support on safety, we’re ready to start testing ways to stop FND episodes before they start. We form a hypothesis of something that would help, practice going into situations that might cause an FND, and try those new approaches, safely.

Sixth, we start applying the successful techniques across the client’s life until they return to the fullest possible life for them.

Is this going to work?

I couldn’t find any great meta analyses on CBT for FNDs but in this NIMH paper, they credited CBT with a significant reduction in FND related seizures. “One randomized clinical trial demonstrated a significant reduction of functional seizure frequency for patients treated with both CBT and sertraline (59%), as well as with CBT alone (51%), while sertraline alone did not significantly reduce seizure frequency (27%) [29].”

I know I’ve read other papers with results in the 40-50% range which is better than nothing, but certainly not the 80% improvement we see in conditions like PTSD. So is this going to work? More likely than not, but it’s not perfect.

Clinicians, you can do this!

My message to other clinicians is that patients need your help and you can do this! You can learn to help people reduce the disability and distress of FNDs. You can do every step. Make sure your client has medical support and that their neurologist has said “this is an FND.” Provide some psychoeducaiton about FNDs (You can learn this). Do a lot of chain analyses to learn the pattern of what’s precipitating their FND episodes. Work with your client to investigate. Help them with general stress and anxiety reduction. Make sure they have a bit of safety planning around situations likely to result in an FND episode. Then, start to gradually try on “FND episode interruption techniques.” This can be grounding techniques, acceptance of not always being in control, disclosing and asking for support during FND episodes, interrupting the behavioral chain that leads to FND episodes, etc. You know how to do all of this stuff. Don’t be intimidated. With a little bit of reading, you can do this. Just make sure the neurologists have taken a look, first.