An example of courage:
One patient with TN went to a psychotherapist after three failed microvascular decompression surgeries. At that time he was taking more than the highest recommended dose of carbamazepine, much to the consternation of his neurosurgery team. Before developing trigeminal neuralgia, this gentleman worked as an accountant for a local university. He enjoyed a leadership position in his church. He visited his adult children frequently and he immensely enjoyed their companionship. He dearly loved his wife of many decades and he cherished their time together gardening, traveling, and socializing with friends. However, after years of TN pain, he had greatly reduced his social contact with members of his church and with his children. He and his wife did very little together other than sit at home reading or watching TV. Their conversations largely focused on the patient’s pain.
As he talked about his life, the therapist noticed that the patient tended to wince in pain when they began to discuss difficult topics. When he winced, she tended to instantly stop the discussion, even though the topic was crucially important to finish. The same pattern occurred in the patient’s discussions with his wife. When the topic of discussion focused upon difficult content, the patient would wince and the discussion instantly stopped. The therapist had no sense that the patient was fabricating his experience of pain; it seemed very real. However, when he winced in pain, he did so in a manner that was very dramatic and unusual among the trigeminal neuralgia patients she had treated. When in pain, his whole face contorted and he covered his face with trembling hands. The appearance of it was striking and it demanded silence.
Despite the authenticity of the patient’s pain, his pain-related behavior clearly worked to his benefit in that it allowed him to cut short conversations that dealt with topics he found personally difficult. While the patient could not avoid pain, he could avoid difficult conversations.
Before the onset of TN, this patient found difficult conversations especially unpleasant. He had always tended to be a little anxious and conflict avoidant. Nonetheless, he had routinely managed to participate in difficult conversations. His work required him to fire subordinates and restrict the spending of faculty. These work-related duties involved many difficult conversations, yet he was able to admirably perform in the workplace. The patient and his wife had three children and had elected to give up their home of many years in favor of a smaller residence at the time of retirement. Prior to developing TN, the patient was able to discuss matters of concern related to their children and the distribution of retirement assets without retreating from the discussion. The patient and his wife did not always agree on the issues, which was difficult for the patient, but he nonetheless managed to discuss issues of concern until they were resolved to both their satisfaction. After the onset of trigeminal neuralgia, the patient had increasingly avoided difficult conversations with significant others and increasingly focused more on discussions related to his pain.
“All I know to do is to hug him, but that doesn’t really help.”
Once the therapist was certain that the pattern of avoidance existed, she commented on it, and asked the patient whether he had noticed the impact that his wincing had upon conversations with his wife and children and in therapy. He thoughtfully considered the question, then responded that he had never thought about it before but, now that he had, he could see that the conversation entirely stopped when he winced. The therapist asked whether he was ever relieved to be done with the topic of conversation when that occurred. He responded, “Yes, sometimes.” The patient’s wife was attending this session. The therapist asked her if she had noticed the pattern. She thought about it and responded that she often felt shut down by her husband’s pain. She explained that seeing him in pain made her feel that she must do something to help him but she had no idea what she might do to help. She said, “All I know to do is to hug him, but that doesn’t really help.” She asked what the therapist thought she might do to help him. The doctor said that it would help him just to understand how helpless she really felt in response to his pain, that she could do nothing more than be honest with him and do her best to take care of herself, so that he could use his energy to take care of himself. The patient very much loved his wife and was bothered by the thought of her feeling confused and helpless. He had never really understood the extent to which his wife felt intensely and uncomfortably inadequate in the face of his pain. She loved him too, yet she was clearly exhausted by her own self-imposed responsibility to ease his pain. She longed to be free of the responsibility for easing her husband’s pain but, as long as his pain was at the center of their lives, the only way for her to be free of this responsibility was to withdraw from him, which she was trying mightily not to do. They were able to discuss all these emotions, the patient’s fearful focus on his pain and his wife’s guilty obligation to ease his pain, to the point that each gained significant insight.
With time and growing awareness, the patient was able to minimize his wincing while talking with his wife and, more importantly, was able to continue discussions that were not easy for him. The patient was able to release his wife from any expectation that she would ease his pain. The patient openly expressed a sense of responsibility for doing what he could to master his fear of pain. He was able to return to social activities with the understanding that he would responsibly limit his interaction if his pain became overbearing. If he did not feel well enough to be social, he committed to assuming responsibility for communicating this and leaving the social interaction in order to care for himself. In these moments the patient was able to comfort himself through recognition that he would eventually feel better. Being freed from the largely self-imposed responsibility to ease her husband’s pain allowed the patient’s wife to hug him when she felt like being close, rather than out of fear or obligation. All of these changes helped to renew the connection between the patient and his wife.
Within four months of treatment, the patient and his wife were obviously happier, and the patient had cut down his use of carbamazepine to a safe and appropriate level. He accomplished this not because his pain was any less intense but because he had gained courage in the face of his pain, and because his awareness of the ways in which the pain had altered his behavior and identity had increased. All this was accomplished through the executive functions of the patient’s prefrontal cortex successfully inhibiting the fight-or-flight response, which allowed the patient to plan a new way of coping with ongoing pain that honored his self-concept as a loving husband and father. This is what it means to control your pain rather than it controlling you. But getting to the place where your prefrontal cortex is calling the shots takes effort and time.
The Psychology of Change
Discussing courage in the face of excruciating, often uncontrollable pain, can strike a moral tone. The process of losing oneself to chronic facial pain does not involve moral failure. Fear in response to trigeminal neuralgic pain is natural and the brain’s response to fear is immediate and powerful. These neurophysiological changes are not a consequence of failure. However, it is important to recognize that the sense of self changes in response to the fearful experience of chronic facial pain—and this is rarely a good thing. The cycle of change is self-perpetuating as long as the cycle operates out of awareness. All need not be lost, however. Understanding that this process of changing identity commonly occurs in response to pain means that one can consciously and positively protect the sense of self, if one chooses to do so. Without exerting conscious effort, the personal and social forces of chronic facial pain will go unchecked and this typically leads to negative alterations in the sense of self.
If you decide that you would like to make changes in your response to chronic facial pain, be patient with yourself. Understand that you are not just making changes in behavior, beliefs, and attitudes: you are changing brain tissue. Through choice and self-reflection, you are altering the way neurons connect with one another to form the neural matrix that supports your identity and directs your responses to others. These changes take time. Be forgiving of yourself when things don’t go as you had hoped they would—and be very proud of yourself when they do.
Fear Plays a Role
We can define fear as a set of behavioral, autonomic, and hormonal events triggered by the brain in response to perceived physical danger. Most everyone will have heard the phrase “fight-or-flight response” and will know something about its value to survival. The fight-or-flight response involves many neural structures, some of which operate outside the brain in the periphery of the body and some of which operate in the very core of the brain. The amygdalae, two small almond-shaped structures situated deep in the temporal lobes of the brain on either side, are in charge of the fight-or-flight response.
Recent research interestingly indicates that the amygdalae also play a central role in the evaluation of faces. The role of the amygdalae in facial evaluation is to identify whether the person of interest is experiencing positive or negative emotion. This assessment is critical to determining whether the person presents a threat or not. Again, we see the primacy of the face to the human experience.
Research teaches us that the amygdalae learn from experience. If a threatening event occurs frequently enough, the amygdalae will come to regard the once neutral or even pleasant events that typically occur before and after the threatening event as also dangerous. By the time this learning has occurred, many other brain structures have become part of the person’s generalized vigilance to danger. Thus, the fear response can generalize as a neural matrix that causes a person to irrationally identify benign life experiences as dangerous. Without intervention, this process can be very destructive to the sense of self.G
Fear with Fight-or-Flight Response
The episodic, intensely painful nature of trigeminal neuralgia is perfect for provoking generalized fear. Imagine a grandmother who loves to hold and cuddle her infant grandchild. This seemingly small act of emotional bonding is critical to the grandmother’s sense of self. As she holds her grandchild, the grandmother recalls how she enjoyed cuddling her own infant children. Stored deep in her brain are memories of being lovingly held by her own mother. The simple unadorned connection of holding a much-loved child is consistent with the grandmother’s larger value system. Cuddling her infant grandchild is not a trivial thing: it is a small but lovely tile in the larger mosaic of her core beliefs about morality and interpersonal connection.
Imagine that as the grandmother and the grandchild gaze lovingly into one another’s eyes, the infant reaches up and touches her grandmother’s face. With this wholly innocent act of curiosity and love, the grandchild starts a rapid-fire series of fight-or-flight events in her grandmother’s brain. The child’s light touch triggers the pain of trigeminal neuralgia in her grandmother. With the painful stimulus of her grandchild’s touch, the grandmother’s amygdala instantly registers threat in the environment and initiates the fight-or-flight response. If this event happens more than a few times, the grandmother will come to fear the touch of her grandchild. This fear will take on anticipatory dimensions that change the grandmother’s feeling about holding her grandchild. These changes are completely out of character for the grandmother: she is, after all, a loving person who deeply values her family; she is a person who enjoys the tenderness of loving touch. In this way, the fear of holding her grandchild threatens the grandmother’s sense of self. She must consciously adjust her thinking about these events if she is to preserve her core identity unaltered by chronic facial pain. If the grandmother does not actively problem-solve about these events, the fear they arouse will inevitably change her self-perception.
The Power of Conscious Thought
The self-preserving force of conscious thought cannot be overstated. Trigeminal neuralgia can initiate primal fear, which over time insidiously and deeply alters identity. This can happen without any fanfare or discussion through the simple interpersonal act of a child’s touch or a lover’s kiss. Still, it is not inevitable that these losses occur. Understanding the physical and psychological changes that chronic pain produces helps to create a sense of perceived control; this alone can help considerably.
It is important to recognize that the fight-or-flight response begins deep in the brain with the firing of the amygdalae, then extends up and out through most of the brain—all in a fraction of a second. Under the fierce provocation of fear, the amygdalae demand an increased synthesis of norepinephrine in the brain. High levels of norepinephrine are associated with increased vigilance to danger. This makes sense: hypervigilance to potential threat is adaptive within the context of what feels like life-threatening pain. The flight-or-fight circuitry activates the lateral hypothalamus and lateral medulla, causing increased blood pressure, constriction of the peripheral blood vessels, increased sweating, and loss of appetite. Part of the fight-or-flight response involves activation of the trigeminal nerve to create the automatic, involuntary facial expression of fright. By the time you have winced in response to the pain, the fight-or-flight response has already occurred. With repeated firing of these neural systems, the brain learns to associate pain with fear. With time, the distinction between fear and pain disappears. The frequent experience of fear pollutes relationships and self-perception with emotions of helplessness and defeat. As fear intensifies, pain intensifies, and so on. This cycle is obviously destructive, but it can be interrupted with knowledge, thought, and personal insight.
Your Brain’s Wiring
You may have heard the phrase, “what fires together, wires together.” Wiring by way of experience is the way the brain learns. The physical systems responsible for the fight-or-flight response learn to sense and avoid danger within the context of experience, albeit not without error. Repeated firings of the system change the brain so that it interprets ever more stimuli as threatening and so that it fires with less and less intense provocation. In other words, the fight-or-flight response can become enhanced through something like a practice effect. This is seen all the time in combat veterans. Those who fought in World War II, the Korean conflict, the Gulf War, Operation Desert Storm, Iraq, and Afghanistan all say the same thing. When they first arrive in the war zone, they are terrified. However, the longer they stay, the more they adjust to the persistence of danger; they describe becoming robotic in their soldiering and going emotionally numb in a seeming indifference to danger. It is not until they return home to the relative safety of their families and community environment that they recognize how much their brains have changed in response to persistent danger and multiple firings of their fight-or-flight system. In the relative safety of the home environment, they irrationally and automatically respond to everyday experiences with instantaneous fear. One veteran experienced a flashback when a small child popped a balloon in a pizza restaurant. Many veterans cannot tolerate shopping in a Target, Walmart, or similar large, open store; the space is too large to adequately scan for danger. There are sounds and people everywhere. From the perspective of their changed brains, any one of these sensory stimuli could signal a life-threatening risk. In response to this generalized fear, these veterans do what is most natural: they avoid places and experiences that they cannot control. This means that they often become housebound and lose their most important relationships.
With persistent trigeminal neuralgic pain, a process can unfold not unlike the one the combat veteran experiences. Over time the patient with TN avoids more and more life experience as he or she attempts to avoid pain. This very human and understandable response to frequent, intense pain can result in the world becoming a very small place. The sense of self shrinks to accommodate a life reduced to nothing more than fearfully avoiding pain. In this way, bit by bit, trigeminal neuralgia alters and distorts identity. Fear and avoidance drive one to gradually let go of important relationships and activities. After trigeminal neuralgia, one may feel reduced to being mostly a patient, who remembers being a person. Having pain and avoiding pain thus become the defining features of one’s life.
These losses are not inevitable, however. Systems of the brain have evolved to modulate or check the automatic properties of the fight-or-flight response. We can learn not to fear what we know to be a nonlife-threatening stimulus. While this won’t change the fact that TN pain is excruciating, it will limit the extent to which trigeminal neuralgia invades your life and alters who you are.
The Power of the Prefrontal Cortex
The essence of who we are is stored in the prefrontal cortex of the brain. That area is responsible for the executive functions that underlie purposeful behavior: it devotes concentration to cognition; it supports analytical problem-solving; it recognizes social cues and suppresses socially undesirable behavior; it imagines the future and plans complex action designed to achieve a particular goal; it makes choices possible. Specific areas in the prefrontal cortex support expressing and understanding language. Indeed, when a psychotherapist interacts with a patient, the therapist’s prefrontal cortex talks to the prefrontal cortex of the patient. Both learn much in the process of psychotherapy and both brains are changed by what they learn.
The prefrontal cortex can modulate activity in the amygdalae through descending inhibitory pathways. Generally speaking, the fight-or-flight response begins in the core basal structures of the brain, then rapidly fires outward through the brain. The inhibitory pathways of the prefrontal cortex begin on the outside structures of the brain and travel inward, where they can modify impulses. While the fight-or-flight system functions very fast, the pathways of the prefrontal cortex function relatively slowly and cover more tissue in the process. The fight-or-flight system of the brain functions automatically, while the systems of the prefrontal cortex function with purpose, on the heels of thought.
If you’ve ever heard people say that they’ve “learned to control their pain instead of the pain controlling them,” they are talking about utilizing the descending inhibitory pathways of the prefrontal cortex to control the tendency of the amygdalae to fire the fight-or-flight response in fearful anticipation of pain. When assisting patients to “control their pain,” the psychotherapist begins by emphasizing that the real lesson is in learning to control their fear of pain. It is the fear of pain that shrinks the world and alters identity, not the pain itself.
Learn to Master Your Pain-Related Fear
The first step in the process of inhibiting fear is to learn what cardiologist and Harvard Professor of medicine Herbert Benson labeled the “quieting response” or “relaxation response.” Dr. Benson, a pioneer in mind-body medicine, thought of the quieting response as opposite to the fight-or-flight response. The quieting response can be learned in many ways, for example, through meditation, yoga, biofeedback, guided imagery, or hypnosis. Dr. Benson thought that prayer, too, could induce the quieting response.
Learning the relaxation response is only the first step in controlling painrelated fear, but it is an indispensable step. The person who wants to master pain-related fear must begin by learning the relaxation response through rehearsal and practice in a context free of pain. This will require a number of pain-free practice sessions. Patients should not attempt to use the relaxation response while experiencing pain during the initial period of learning the response. Using it too early will result in the pain undoing what has been learned. This creates a one step forward, two steps back experience that diminishes hope and motivation. However, once patients can confidently and reliably produce the relaxation response, they can begin to use it immediately following the experience of TN pain. This helps to contain the fight-orflight response so that it does not generalize throughout the brain. In other words, the relaxation response stops the fight-or-flight response in its tracks, before the rest of the brain can see it coming. It is essential for the patient to continue using the relaxation response during pain-free intervals so that the response remains robust.
The second step in learning to master pain-related fear is to do a cognitive appraisal of the fearful stimulus and the associated behavior it provokes. This appraisal may include recognizing and concentrating upon the fact that the pain will pass (or diminish) and that the pain will not kill you. With ongoing cognitive work, self-awareness typically increases through a process of discovery.