The impact of TN and treatment on the lives of participants emerged as four predominant themes [1]: diagnosis and support with TN [2], living in fear of TN pain [3], isolation and social withdrawal, and [4] medication burden and looking for a cure. Each theme will be discussed and illustrated with extracts from the transcripts collated in Table 3, with reference to relevant quotes indicated in the text.
Table 3 Quotations extracted from transcripts
Diagnosis and support with TN
This theme describes the diagnosis and support provided for TN. Most participants reported a delay in an accurate diagnosis alongside difficulties in adjusting to the diagnosis of TN. Participants described the severity of TN pain and their needs for health professional support during symptomatic episodes.
Misdiagnosis or extended exploratory investigations (e.g., dental work) occurred for most participants prior to receiving an accurate diagnosis. This was viewed as a significant barrier to accessing appropriate care resulting in many ineffective interventions. The theme also describes the impact of severe pain experienced with the condition (ref 1 and 2). Participants often accessed standard treatments but they reported that they still experienced pain, which they found imposed significant limitations on their daily lives. As well as constantly feeling fatigued, participants also expressed a sense of loss (ref 3 and 4).
These descriptions illustrate the distress that is a common consequence of TN. One reason for this is that participants become overwhelmed by the severity of the pain, and associated difficulties, and so withdraw, socially. For one participant, it is difficult to halt feelings of pessimism at those times (ref 5). Another participant indicated feelings of anger and resentment at having TN. She momentarily implicates herself, as if pondering whether she is in some way responsible for her illness (ref 6).
The analogy of being suddenly struck in the face or the mouth was used by many participants to describe the onset of episodes of debilitating pain that last for varying lengths of time and recur in phases, before easing (ref 7). Because of the sudden and severe nature of TN pain, participants reported a need for urgent referral to their consultant, when they became symptomatic (ref 8). This would be the preferred pathway, rather than routine appointments, when asymptomatic. Participants’ accounts illustrate the considerable burden the sudden nature of TN pain imposes on participants. Between attacks, participants were fearful that the pain could return at any time, positioning them as suffering from pain and the fear of pain.
Living in fear of TN pain
This theme captures the individual impact of TN on the lives of participants and the disruption it causes as they try to negotiate daily life. Addressing aspects of quality of life, sub-themes relating to personal care, diet, impact on emotions, relationships with family and friends, were discussed in all four focus groups.
Participants reported a range of avoidance behaviors, affecting the face, since the onset of TN. Fear of pain episodes prevented participants from engaging in aspects of personal care, which they had experienced as pain stimuli (ref 9 and 10). Other participants, however, expressed the attitude that they would continue trying to lead their lives as normal, even with the potentially disruptive nature of their illness (ref 11). Despite being determined to continue as normal, participants were forced to make adjustments in important areas of their lives. Eating presents a major problem in TN and participants’ reports highlighted a dilemma which placed them between needing to avoid chewing—in order to prevent pain—and patterns of disordered food and drink consumption, which put participants at risk of nutrient deficiency. While one participant relied on liquidized food, another adopted an extremely restricted diet (ref 12). Other participants reported including alcohol in their diet, to self-medicate and to help them cope with the pain (ref 13). Participants’ difficulty eating, while in pain, was revealed as anxiety-provoking and as having implications for wider social interaction (ref 14).
Isolation and social withdrawal
Emotional difficulties, manifested in feelings of isolation and withdrawal from social interaction, were reported by participants in all four groups. Often social isolation arose from decisions by participants to withdraw as a direct consequence of pain, or fear of pain. The descriptions of two participants illustrated experiences of social anxiety (ref 15 and 16).
Depressive symptoms were also indicated by two participants, the second, awaiting surgery, who made explicit the extent of their emotional distress (ref 17 and 18). Families and friends have an important effect on the well-being of participants as they manage their illness. Most participants reported that relatives were supportive, but pain severity induced isolation and made social interaction difficult, even with family (ref 19 and 20). Avoidance of certain aspects of daily living and of social situations is presented as central to the impact of TN. Despite the strength of relationships within families, the pain and unpredictability of the condition cause difficulties in adjustment, for all parties.
Medication burden and looking for a cure
Participants in all four focus groups reported limitations in pharmacological management. They identified a range of issues that characterized treatment failure, and as can be seen by Table 2, over time, most had experienced several changes in medication. The majority expressed a sense of being overwhelmed by the side effects of drug treatment, in addition to continuing pain (ref 21 and 22). Many participants directed the problem of pain towards attempts to self-manage medication, continually assessing their needs and fluctuating between dosages in attempts to establish an effective regimen and exert a degree of control over their pain. Two participants revealed that they had intentionally over-medicated because of pain severity (ref 23 and 24).
For most participants, the attempt to self-manage medication involved a constant struggle to balance their need for optimal pain relief against their wish to avoid dose-related side effects. All participants reported extreme tiredness, with some developing additional health issues (ref 25 and 26).
Even when drug intake produced anticipated benefits, participants still encountered challenges to their quality of life, with increased treatment side effects being accepted as trade-offs for achieving pain relief from TN (ref 27). Participants reported experiencing long-term medication use to be as burdensome as living with the chronic nature of TN itself. Many felt forced to make difficult choices about whether to endure side effects or risk the pain associated with TN (ref 28).
When taking chronic pain medication, participants encountered different impacts that were defined by their initial experiences of treatment. Participants often felt overwhelmed by the drugs they were prescribed, they worried they would not work, and experienced distressing side effects and associated health issues. Participants reported a number of medication-related cognitive impairments, which caused additional difficulties in everyday functioning. Employment was one of the key areas in which participants were affected by the debilitating combination of chronic pain and side effects of medication. One participant reported leaving his job after an accident caused him to question the safety of his work (ref 29). A participant reported being subjected to accusations of drug addiction when side effects of pain medication caused fatigue, along with speech and mobility problems (ref 30). Another participant reported that medication side effects affected her performance on accountancy computing tasks at work. The difficulties she encountered led her to leave her job (ref 31).
Difficulties caused by side effects were broad. Driving was an environment in which participants experienced concentration difficulties. One participant reported that she had been suffering side effects when she caused several minor driving collisions (ref 32). Mental arithmetic was more difficult for participants when they were taking medication (ref 33). Memory was another key area of difficulty. Three reported problems with recall of numbers and also recall of words and names. Additionally, skills such as following a knitting pattern (ref 34) were impaired. Two participants reported motor function difficulties, which affected their balance. The same participants experienced problems with fine motor control, with both describing how they were often unable to co-ordinate their actions for handwriting (ref 35 and 36).
As all focus group participants had been on medication for significant periods of time, they were all able to identify ways in which the high doses they used had affected their cognitive functioning. Some participants had undergone at least two surgical procedures, hoping to be cured. Resolution of TN is challenging but surgery can improve pain, and all participants reported less medication use, post-surgery. While not completely off medication, because of fears of pain recurrence, participants reported less tiredness and better functioning. Although participants had experienced negative effects whilst using medication, they had been compliant because surgical interventions had not been offered (ref 37). Having taken significant doses of medication for long periods of time, participants were also knowledgeable about medication side effects and have realistic expectations of surgery (ref 38).
Where surgical procedures had been performed, positive outcomes were reported. For example, participants who had undergone GK treatment reported benefits to their everyday lives. In contrast with their former feelings of isolation, participants valued the symptom relief achieved by this procedure as enabling them to re-engage with aspects of life that they considered important (ref 39).