Functional Neurological Disorder is a common, but infrequently diagnosed neurological condition that appears to be on the boundary between neurology and psychiatry.
When I was diagnosed in 2003, it was labeled as a psychiatric condition that required a neurologist and a psychiatrist to diagnose. Since the mid-2000’s there has been a huge push by both the neurology and patient communities for FND to be recategorized as a neurological condition, rather than a psychiatric one.
This has(mostly) occurred and the push continues. FND symptoms generally match with neurological symptoms, though for some of us the triggers appear to be psychological, and for most of us triggers are trauma or stress associated.
Now, neurologists are able to diagnose FND without psychiatric input.
Unfortunately though, the stigma laid on mental illnesses is part of the reason, and some FND patients are dangerously overreactive to the implication that they are managing a condition with a psychiatric aspect.
In this post, I’m going to explore the psychological tools and techniques that are proven or indicated to be helpful for people with FND, and which may or have been proven helpful for people with other neurological conditions.
Psychiatric medication(antidepressants or antianxiety medications)
FND is not psychiatric, but it does appear in many cases to be stress-associated. Increases in stress(both positive and negative, often both mental/emotional and physical/phsyiological) tend to increase the severity and/or intensity of FND symptoms.
There also are a lot of FND patients(including myself) who have underlying mental health conditions(in my case, depression and anxiety).
Whether or not we have those diagnoses, research has suggested that chemical interactions that manage anxiety or depression can also sometimes decrease the severity of FND symptoms. It definitely helps people with underlying depression or anxiety to manage those and thereby decrease the stress our bodies are feeling or responding to. There are some indications that for people with FND who have not felt depressed, these benefits are similar.
These medications can be powerful and require a relatively long time to be effective, but for many people with FND, they can help reduce symptoms and improve state of mind, even if you don’t have a diagnosis of depression or anxiety.
This should only be tried with the knowledge and support of a doctor, and it may take time to find the specific form that is helpful and has minimal side effects. Body chemistry and reactivity varies between people, and it may take some experimentation to find a form that helps you individually – but it may be worth trying.
Also, most disabling conditions carry the potential to cause or increase a state of depression and/or anxiety, simply because there is something lost in that process. I’m not saying anti-depressants are always necessary or appropriate, but simply that becoming disabled is a loss that can impact state of mind.
Cognitive Behavioral Therapy
CBT in particular is often recommended for FNDers, especially if they are overwhelmed, are having a hard time recognizing or managing their triggers, or who otherwise indicates that there is a strong psychological aspect to their FND symptoms.
CBT treatment has been proven effective for some FND patients(which is about the best we’ve been able to get).
CBT is a technique built around recognizing inaccurate or negative thoughts when and as they occur so that you can then counter those assertions or otherwise manage the thoughts.
While it is used to manage depression, PTSD, and other mental health conditions, it also is useful for others who need to learn how to manage stressful life situations(such as becoming disabled).
While I have never attended a ‘CBT’ course as such, the concepts involved are familiar to me from the therapy I have had.
Talk therapy in general
There are a lot of forms of talk therapy and a variety of educational requirements for people to become therapists. I strongly believe that seeing a therapist is something likely to help anyone, and that having time set aside to talk about specific aspects of your life with a non-judgemental person whose focus is on helping you is useful for anybody, period.
For people with any disabling condition, it’s good to have somebody to help them think through the grieving process and how to find a healthy ‘new normal’.
It’s normal to grieve the loss of who you could have been(in the case of disabilities that began at birth or early development) or who you were(in the case of disabilities that occurred later in life), and there is an adjustment period that goes with that.
Especially for people who become disabled later in life, having a trained professional who can help you adjust, especially early on, can be very helpful.
For FND patients in particular, we often are facing a very sudden and extreme change, which makes that adjustment process harder.
Also, for many of us, there are triggers – activities, actions, or substances that set off our FND symptoms – and often psychologists can be very helpful in both identifying those triggers and coming up with ways to manage them.
In general, I would recommend focusing on trained psychologists or psychiatrists(as opposed to social workers, guidence counselors or others who have less training).
Generally, psychiatrists manage the medication and have short appointments and psychologists have the more traditional ‘talk therapy’ with regular 45-50 minute appointments, but there are exceptions. You want those regular talk sessions.
Other things to look for in a therapist are training or experience in trauma-associated therapy(FND is often viewed as trauma-associated), or in whatever additional conditions you have.
For example, I want to see a therapist who has prior experience with anxiety management and depression, though that almost goes without saying as those are two of the most common mental health diagnoses.
The other priority is making sure that you see a therapist who accepts the healthy aspects of your identity. For example, you want a therapist who respects your religious beliefs(including lack of religion), your gender identity, and your sexual orientation.
If you are part of the LGBT community, seeing a therapist who believes that straight is the only ‘healthy’ orientation is going to do more harm than good.
If you are Jewish, seeing a therapist who believes you can only be saved by Jesus isn’t going to go well.
Use common sense with this, but do spend time your first session making sure that you can work with the therapist you are seeing.
Mindfulness meditation or learning MBSR
Mindfulness-Based Stress Reduction is a technique initially created by Jon Cabot-Zim in 1979. It uses meditation in various forms to help patients to learn to relax and become more self-aware, building skills to better manage the stresses associated with their health conditions.
Initially developed as a pain-management tool, it has been proven effective for a variety of conditions, including FND.
The process is complex, but generally these techniques help individuals to put more mental and emotional space between the pain or other challenge they are experiencing and their living experience.
Very often when somebody experiences chronic pain, the pain itself isn’t the biggest problem. The other challenges are inextricably associated with the pain and occur as a result of the pain, but they can often be managed in other ways.
For example, somebody experiencing foot pain may initially feel the pain, but then may start thinking about how that means they can’t walk, which leaves them feeling like a burden to others, or disappointed that they can’t do they things they had planned for the day. Those thoughts may lead to anger or frustration, a sense of failure or guilt over letting others down.
All of those thoughts put them in a low or dark state of mind and can put a pall over their entire day. Ruminating on these negative feelings can make that negative state last longer.
Mindfulness instead trains people to just spend some time acknowledging and understanding the pain itself, without falling into the mental or emotional traps, which often helps a person stay out of that dark mental space and instead leaves room for them to do whatever they are able to do and get on with their lives without falling into a trap of negative thinking which may keep them from doing more another day too.
Meditation is a practice, not an event, and it does take a while to really experience the benefits. However, for many it’s a worthwhile practice to develop.
For FND in particular, research has shown that people with NEAD (Non-Epileptic Attack Disorder) symptoms can have obvious and measurable improvements through a good mindfulness practice, with the number of attacks subsiding in a statistically significant way.
For others, like me, who have sensory or movement symptoms, the benefits are less clear-cut, but can still be signficant. Like pain patients, FND patients who participate in these programs have a more positive perception of our state of mind and overall attitude, even though they cannot quantify proof of improvement.
I highly recommend MBSR to my fellow FNDers and others managing conditions that have a large pain or stress component.
Conclusion: psychological tools can help manage FND
FND is a neurological condition that is on the boundary between neurology and psychiatry. While it was considered psychiatric until relatively recently, it does make sense to put it on the neurological side when it comes to diagnosis and treatment.
However, that doesn’t mean that the psychiatry/psychology aspect should be ignored. Many of the treatments that help manage FND are firmly on the psychological side, and most FND treatments require a multidisciplinary approach.
Psychiatric and psychological supports can be very useful in managing FND, and have proven useful for other conditions as well.
Antianxiety and antidepressant medications appear to help a good percentage of FND patients, including FNDers who do not have an anxiety or depression-associated diagnosis.
Talk therapy(including CBT) also have a high liklihood of helping some FNDers, and I believe generally help most people who decide tomake that investment in themselves.
Meditation and mindfulness practices have also been proven helpful for multiple pain and stress-associated conditions, including FND. For many people with NEAD(including FNDers), MBSR has been proven to reduce the frequency of episodes/attacks. For the rest of us, MBSR and regular meditation practice have been proven to improve state of mind significantly, even if there hasn’t been a scientifically proven decrease in symptoms.
Psychology has given us a lot of tools to help manage our FND symptoms. Let’s not be too quick to kick these important aspects of treatment aside in a rush to focus on FND’s neurological nature.