“It's the worst pain I think you could ever have in the world”: The experience of living with trigeminal neuralgia

Abstract

Objectives

To understand individuals’ experiences of living with, and attempting to manage, trigeminal neuralgia (TN), a rare neurological disorder characterised by sudden episodes of intense, incapacitating unilateral facial pain.

Methods

We undertook in-depth interviews with (n = 25) individuals living with TN in the United Kingdom recruited via online forums. Data were analysed thematically.

Results

Participants described the far-reaching impact of TN on their everyday lives, with their experiences broadly fitting into three overarching themes: “enduring pain”, “avoiding pain” and “treatment burdens”. Taken together, these three overlapping experiences comprise what we term the “triple burden” of TN: namely, the burden and assault to self, arising from being in intense and intractable pain; the burden and loss of self-identity resulting from avoiding pain triggers; and the additional burden resulting from having to balance pain relief with severe medication side effects.

Discussion

Living with TN can be a highly disruptive and distressing experience because TN pain and the strategies people employ to try to avoid triggering it can assault and undermine their self-identities and sense of self-worth. We argue that applying sociological concepts, such as Bury's work on biographical disruption, may help to shed light on people's lived experiences of TN and inform the care and support provided to them.

Background

Known as “the suicide disease”, trigeminal neuralgia (TN) is a rare neurological disorder characterised by sudden episodes of intense, incapacitating unilateral facial pain, which can be so severe that it has attracted this unenviable epithet. ¹ Rates of TN increase with age, and the condition is more common in people already living with multiple sclerosis (MS), ² and in women, for reasons that are not well understood. ³ With a lifetime prevalence of 0·16–0·3% and an incidence of 12·6–27·0 per 100,000 person-years, ⁴ TN is a rare condition. Furthermore, TN lacks simple objective testing and is rarely encountered by general practitioners, who often lack the expertise to recognise the condition. ⁵ Indeed, TN can be difficult to diagnose, with many individuals having to consult multiple dental and medical practitioners whilst dealing with the uncertainty and distress arising from not having a diagnosis. ⁶ When a diagnosis is finally achieved, living with the condition entails multiple challenges and life changes, as people with TN (PwTN) not only have to manage TN pain and avoid pain triggers but also cope with medication side effects. ⁴ TN pain can be triggered by the most innocuous activities, such as eating, drinking, and brushing one's teeth^5,7 and PwTN may go to considerable lengths to avoid these kinds of triggers. ⁸

TN is most commonly treated with antiseizure medications, such as carbamazepine and oxcarbazepine, with surgery only being recommended in extreme cases. ² However, these drugs have significant side effects, especially at the higher doses often required to manage TN pain. ⁹ Whilst progress has been made in understanding the aetiology, diagnosis, and clinical management of TN, surprisingly little work has explored people's experiences of living with TN and the resources they deploy in their endeavours to manage this condition. Qualitative research undertaken to date has been small-scale, has utilised focus group methodology (which does not permit individual experiences to be captured and explored in-depth), and has focussed on clinical recommendations, rather than offering an in-depth understanding of lived experience.^10,11 Previously, we have described the troubling journey people with TN may encounter in acquiring a diagnosis. ⁶ Here, we explore how people live with, and attempt to manage, TN. In doing so, we will propose that applying sociological concepts, such as Bury's ¹² work on biographical disruption, may help to shed light on people's lived experiences and, in turn, inform the care and support given to PwTN.

Methods

The study design was informed by CW's own lived experience of TN and consultations with other PwTN, including attendees at an annual Trigeminal Neuralgia Association (TNA) conference. As the study aimed to understand people's lived experience, in-depth interviews were utilised, as they allowed individual perspectives and experiences to be captured in depth, while also giving participants opportunities to raise issues which really mattered to them, including those unforeseen at the study outset. ¹³ Due to CW's own lived experience, it was recognised that asking participants to travel for an interview could pose an insurmountable hurdle, particularly if they were currently experiencing severe pain. Hence, a decision was made to use telephone interviews, which have previously been described as a naturalistic, convenient, and practical method for collecting qualitative data from individuals in hard-to-reach populations. ¹⁴ Participants for whom speaking could act as a pain trigger were offered opportunities to participate in several shorter interviews or to be interviewed via email. Participants were also advised that they could terminate their interview at any time if they encountered pain, simply by hanging up.

Recruitment and sampling

Participants were recruited through an online advertisement placed on the TNA website and a large, closed forum for PwTN and an opt-in approach was used. Purposive sampling was used to attain diversity in the final sample in terms of age, gender, and education. Recruitment continued until data saturation was achieved.

Data collection

Interview guides were developed in light of literature reviews, consultations with PwTN, and revised in light of emerging findings (see Table 1 for details of the main areas covered). Interviews took place between April and October 2018 and lasted 48–149 minutes. One participant opted to take part via email and seven took part in two to three shorter interviews. All interviews were digitally recorded and transcribed in full.

Table 1.

Participant characteristics.

Characteristic	n	%
Sex
Male	6	24%
Female	19	76%
Educational attainment
No qualification / NVQ	1	4%
GCSE / O level	3	12%
A levels or equivalent	3	12%
Tertiary (Undergraduate degree)	8	32%
Tertiary (Postgraduate degree)	8	32%
Declined to say	2	8%
Ethnicity
White British	23	92%
Mixed Caribbean	1	4%
White & Asian	1	4%

Data analysis

CW and JL analysed the data with input from MP, who read interview extracts. The analysis used both inductive and deductive thematic approaches. Individual interviews were read through repeatedly (data immersion) before being cross-compared to identify overarching themes, with CW leading the analysis, and JL and MP supporting identification and validation of themes. Data were coded using these overarching themes and coded datasets were subject to further analysis to identify subthemes. Differences in thematic judgements were minimal and when they occurred, they were discussed among the research team until a consensus was reached. This was achieved by refining theme definitions and merging some (initial) themes. The analytical process was supported by the use of NVivo 10 (QSR International Pty Ltd, Doncaster, Australia), a qualitative software indexing package, which allowed the first author, CW to organise, collate, and retrieve coded interview data.

Results

Twenty-five people took part, whose ages ranged from 29–83 years and who had been living with a diagnosis of TN between three months and 22 years. For further information about the sample see Table 2.

Table 2.

Main areas covered in interviews relevant to the reporting in this article.

Can you tell me a bit about yourself e.g., Who you are? What you do? Who you live with? Age, occupation (or previous occupation), education Did you have any prior knowledge of TN before you were diagnosed? Can you tell me what your life was like before you had symptoms of TN and how life has changed as a result of having TN? How has TN affected your day-to-day life? Probe to explore food and eating practices, activities, employment et cetera. What kinds of changes have you made in order to adapt to life with TN? (work life, family life) How has the TN affected your social and family life and the kinds of things you are able to do? How do you think your TN has affected other significant people in your life (partner, family, friends, etc.)? What kinds of things are you doing to manage/prevent the symptoms of TN? What kinds of medication are you on? What do you see as the risks and benefits of taking medications? Do you experience any side-effects? How do you manage these? Do you ever stop taking medication/reduced doses (why)?

As participants’ accounts powerfully highlighted, living with TN can be highly disruptive and distressing, with participants reporting multiple ways in which the experience of TN pain, and the strategies employed to try to avoid pain episodes could assault their sense of self-worth. Below, our reporting covers three broad, overlapping themes: “Enduring pain”, “avoiding pain” and “treatment burden”. In presenting our findings in this way, we will show how participants experienced a “triple burden” of TN: namely, the burden and assault to the self arising from being in pain: the burden and loss of self-identity resulting from avoiding pain triggers; and the additional burden resulting from having to balance pain relief with severe and extremely unpleasant medication side effects. To protect participants’ identities, pseudonyms are used below:

Enduring pain

Participants emphasised the unique and overwhelming nature of TN pain, with some women, for instance, noting that TN pain attacks were significantly worse than those endured during childbirth, and others likening their pain experiences to being tasered or “attacked in the face with a cattle prod” (Susan). Indeed, some suggested that their pain experiences could be so intense and all-encompassing that, “you can’t do anything- all you can do is cry and scream”, as Charlie put it, or as Rita similarly described:

“It's so debilitating [tearful]. It just impacts on every facet of your life. You don’t want to do anything. Really, all I want to do is lie … And that for a while [it] almost becomes your life … All there is, is waiting and hoping for it to pass.” (Rita)

As a consequence, as participants further noted, TN pain could render them unable to undertake everyday activities that gave them a sense of purpose and self-worth. This included working, preparing food for and looking after others, or, in Hermione's case, performing basic human acts such as cuddling and kissing her children:

“I felt guilty that the kids were missing out on a lot of things … I wasn’t able to talk with them. I couldn’t give them cuddles, couldn’t give them kisses, couldn’t do any of that.” (Hermione)

Additionally, some noted how, when they were in pain, they were unable to eat or speak, leaving them feeling isolated and disconnected from others, with some further suggesting that they were just “existing” (Ron) as a consequence or living like “a virtual hermit” (Eileen).

Avoiding pain

Understandably, participants described going to great lengths to avoid doing anything that could trigger future pain attacks. In doing so, they revealed the second burden of living with TN: specifically, they highlighted how the kinds of activities they needed to avoid to try and prevent TN pain were the same activities they were unable to do when they were in pain. This included simple, everyday acts of self-care, such as brushing their teeth, showering, shaving, washing their hair, and consuming food and drinks because of their concerns that even slight facial movements could trigger a pain attack. As well as sharing their frustrations at being unable to do these kinds of things, participants highlighted a resultant loss of dignity and self-worth. This included Susan, who shared the sense of loss she experienced as a result of having to restrict her personal hygiene:

“Washing is another one … because even just the lightest touch can trigger the pain. And washing my hair. And if I’m in the shower I have to hold my hand over my face while the water is trickling down … It's tricky … that's just the final- that’d be the final thing taken from me. You know, not being able to look after personal care.” (Susan)

Penelope, likewise, highlighted the indignity of having to eat liquidised foods, which, not coincidentally, she likened to slurping baby foods:

“It destroys your life, I mean you can’t eat…I did some research into very, very soft foods that when you can’t move your jaw you can just slurp up this baby food. And that is so demoralising … I bought a [food blender] … I put in carrots and broccoli and all sorts of good things … And I’m slurping up this baby food and … I thought ‘oh my god, what have I come down to, I can’t live like this.” (Penelope)

Participants described other ways in which their efforts to avoid pain triggers could have highly detrimental impacts on their sense of wellbeing and self-worth. This included making difficult decisions to reduce their working hours or, in some cases, stopping work altogether, which, in Katie's case, meant being reliant on social welfare:

“I can’t possibly see a time when I could go back … it's a very, very stressful job anyway so it wouldn’t help the TN and a very noisy environment … So work is over, unfortunately for me at 52. And you’ve got…to get used to and the financial side of that. You know, going from a very well-paid job to what I’m on at the moment, employment support allowance.” (Katie)

Participants also reported having to decline invitations to socialise with family and friends, and in extreme examples, to avoid speaking for fear of triggering a new pain attack. This included Hannah, who, prior to developing TN, had considered herself to be a fun-loving, highly sociable individual, and who now reported feeling like a very different kind of person as a result of no longer embracing opportunities to spend time with her friends:

“You become a different person…You just basically live for pain. I went from being some who is always outgoing, wanting to go out with my friends to the pub, to saying ‘oh sorry, I can’t go there, it's too noisy, it’ll set my TN off’ or ‘I can’t eat that it’ll set my TN off’. All the things you just used to take for granted are just gone … I went from being someone who's outgoing and all the time meeting people to cutting everyone out of your life.” (Hannah)

Most crucially, participants discussed the impact their avoidance strategies could have on the most intimate and important relationships in their lives, with those such as Hermione sharing the guilt she experienced as a result of having to delegate housework and childcare to her partner, and Lavender, who reported how her relationship with her partner had fundamentally changed as a result of needing to avoid physical contact:

“The guilt was a huge thing to deal with. I felt guilty that my husband had to do all the housework, I felt guilty that he had to come in and look after the kids.” (Hermione)

“The relationship between me and my husband I haven’t got any inclination to you know be intimate or anything else … it affects everything.” (Lavender)

Treatment burden

The use of medication to manage TN pain was ubiquitous across participants’ accounts, with virtually all reporting taking Carbamazepine, often in conjunction with other types of anticonvulsant drugs recommended for TN pain management. In keeping with the well-established side effects of these kinds of medications, which include significant drowsiness, feelings of dissociation and disorientation, nausea, balance problems, slurred speech and memory issues, participants reported multiple ways in which their medications could have highly deleterious impacts on their ability to undertake activities of everyday living, with several, like Hannah, likening their experiences to being “like a zombie”. These negative impacts were most keenly felt in the domains of family and work life, with some suggesting that medication side effects could cause similar disruptions to their roles and relationships as TN pain itself. This included Dora, who shared the worry and distress she experienced when she was seen out in public appearing to be drunk. In doing so, Dora also alluded to an erosion of her role as a mother due to needing her young daughter's help to walk and retain her balance:

“I am literally sometimes off my face, so I can’t walk properly and that will last hours … I’m all over the place. I was just walking my daughter to McDonalds … but I can’t walk, I mean she literally had to walk me there. People must think that I’m drunk. And when we go in a shop I’m quite embarrassed because I will drop things, and like when you’re in the first stages of being drunk.” (Dora)

Similar concerns were raised by Poppy, who not only noted how the side effects of her pain medications had rendered her unable to work, but also how her child had experienced considerable distress as a result of observing her looking so weak and unwell:

“I can remember my daughter coming upstairs to see me when I had been bedridden, I can’t remember for how many days but I can remember turning my head and looking at her. And the look of concern in her face was just so palpable.” (Poppy)

At the same time however, participants also noted that their medications could offer at least some relief from TN pain. Indeed, many presented their medication use as a necessary evil because whilst taking pain medications could have highly deleterious impacts, without them functioning as a person, a parent, or a worker was simply not possible. As Lily aptly summed up:

“I can’t stop the medication because I couldn’t exist. I couldn’t do anything with that amount of pain with every single thing you do triggering it. You’ve got no choice really.” (Lily)

Many participants also described actively working to manage their treatment by titrating and/or changing the timing of medication doses. In some instances, participants reported undertaking this treatment work with the encouragement and support of healthcare professionals:

“I’ve had it for such a long time and I’ve come to understand how my body is with it … my last GP she ended up, she said to me ‘just self-medicate basically, you understand this better than I do’.” (Rita)

Indeed, such participants often noted how their openness to experimentation and independent dose adjustment had arisen from previous encounters with healthcare professionals and a mounting awareness of the lack of clinical certainty about how TN pain should be managed; an issue which could also compound their sense of isolation of living with TN:

“‘They [neurologist] basically said to me ‘you’re a human guinea pig, we don’t know what will work’ and I was like ‘oh, okay, great…Because they even said ‘we’re just guessing’ and they’re basically just gonna put stuff in you until they find something that works and every time I asked ‘oh what ‘s the long term side effects?’ they’d go ‘we’re not really sure at this level, because nobody takes them at this dose.’” (Hannah)

However, in their efforts to minimise the disruptive impacts of side effects, most described debilerately deviating from healthcare professionals’ instructions, even if this came at the cost of experiencing breakthrough pain. For Harry, this involved changing the timing of his doses to permit him to drive to and from work and, hence, to remain in paid employment. As he described:

“I get dizzy sometimes and I certainly get double vision. And I have to drive to work every morning. What I do is, I’ve learnt to- I don’t take a tablet first thing in the morning until I get to work and then I take the one in the afternoon a couple of hours before I drive back. I can cope with that.” (Harry)

Alice, likewise, reported occasionally postponing her evening medication to allow her to retain some elements of her life (socialising with close friends):

“If I go out I’m putting off taking my drugs as well … Because when I take my medication, it does make me a bit dopey … it’ll be kicking in and I’ll be falling asleep in the main course … I mean I do go out, but it has to be a good reason, it would have to be good friends. And I have to think quite carefully about- I have to plan ahead. Being spontaneous seems to have gone out the window.” (Alice)

In offering these kinds of accounts, Alice, like others, alluded to additional burdens to undertaking treatment work; namely, the effort, loss of spontaneity and advance planning that this could involve.

Discussion

By drawing upon the lived experience of PwTN, this study has sought to offer insights which extend beyond clinical understanding of this condition. In doing so, it has highlighted the wide-ranging, highly detrimental and human impacts TN and its management can have upon all facets of PwTN's everyday lives. Furthermore, by allowing participants to share their experiences in their own words, this study has highlighted how living with this extremely painful, debilitating condition for which treatments have limited efficacy, can fundamentally undermine and erode people's self-identities, dignity and sense of self-worth.

While a wealth of studies have explored the burden of living with chronic neuropathic pain (e.g., ¹⁵ ), TN, as Cheshire ¹⁶ has observed, is a very distinctive form of neuropathic pain, unparalleled in its severity. This observation powerfully resonates with our own findings which have highlighted how, when PwTN are in pain, they experience what Scarry, in a study of torture, has described as state of existential ‘non-being’, wherein, intense pain “destroys a person's self and world” ¹⁷ and, in some instances, renders them unable to eat, speak or even move. Indeed, we would argue that TN presents a quintessential, albeit extreme, example of what Bury ¹² has termed ‘biographical disruption‘. Drawing upon Giddens’ ¹⁸ notion of a ‘critical situation‘, Bury developed this concept to capture and explore the experiences of people recently affected by rheumatoid arthritis. Specifically, as Bury has highlighted, and in line with our own findings, the onset of this painful, debilitating condition can lead to a fundamental rethinking of a person's biography and sense of self due to an increased dependency on others, difficulties undertaking activities of everyday living and a heightened awareness of one's own embodied, fragile existence. However, as an advancement of this concept, we have also shown how PwTN can experience a second burden to living TN. This is because, while individuals living with other chronic (pain) conditions are often able to make adaptions and mobilise resources ¹² which enable them to undertake a form of biographical repair (see, for example^19,20), for PwTN the kinds of strategies they need to adopt to avoid triggering debilitating TN pain (e.g., avoiding eating certain kinds of foods and attending to personal hygiene; curtailing paid work and social activities; stopping talking) may serve, ironically, to disrupt their biographies further.

We have further shown how PwTN may experience a third burden to living with this disease due to the impact of, and work involved in, managing their condition using medication. Indeed, participants often positioned medication side effects as being almost as disruptive as TN pain itself, an issue which resonates with Demain et al.'s observation that biographical disruption can also arise from treatment administration. ²¹ Indeed, in line with Demain et al.'s ²¹ findings, participants highlighted biological, relational, and biographical disruptions resulting from use of anticonvulsant medications. Specifically, their accounts suggested that treatment side effects not only had embodied impacts (e.g., drowsiness and fatigue), but also negatively impacted their roles and relationships, with mothers, for instance, poignantly describing now needing their children to help take care of them when their medications left them feeling disoriented and confused. While others have observed how these kinds of negative impacts can lead to medication discontinuation, ²² participants in our study considered the disruptive side effects of TN medications as being more bearable than TN pain attacks; an issue which helps explain the high levels of medication adherence observed within this particular patient population. ²³ However, many also indicated undertaking a form of ‘treatment work’ wherein they altered the timing and/or size of doses in their efforts to manage pain levels while allowing themselves to retain or regain valued roles and relationships. Indeed, as others have similarly argued, rather than understanding this kind of treatment work as an act of ‘non-adherence’, participants’ decision-making needs to be understood as ‘rational’ and ‘strategic’, especially when the biographically disruptive nature of TN is taken into account.^21,22,24

Our findings have several important implications for clinicians supporting PwTN. Indeed, arguably, they underscore the importance of clinicians being cognisant of the far-reaching impacts TN can have upon the wellbeing of those affected by this extremely painful, debilitating condition, for which medication can only offer limited relief. In light of our findings, we recommend close monitoring of PwTN to allow any mental health issues to be identified promptly and, in line with recent guidelines, ⁴ that psychological support be made readily available to all of those who need it. The consumption of food and drink is one of the most widely recognised TN pain triggers; ⁵ indeed, others have raised concerns about the potential for TN pain to reach levels where individuals suffer from dehydration and malnutrition.^4,8 Adding to these important observations, we have shown how PwTN's attempts to adapt their dietary choices to avoid TN pain can also have deleterious impacts, with some participants, for instance, highlighting the infantilising effects of eating purified foods to avoid chewing. These findings, alongside those of others,^4,8 suggest that PwTN may benefit from support from dieticians and other healthcare professionals, to help them identify foodstuffs and ways of consuming them which allow them to retain a sense of dignity and good nutritional intake without triggering TN pain. While some participants appreciated being given freedom to adapt their medication doses to their needs, clinicians need to be aware that individuals may feel overwhelmed and isolated as a consequence. Furthermore, while clinical guidance actively encourages clinicians to trial multiple medications ⁴ our data suggest individuals may feel disconcerted about what they perceive to be a trial-and-error nature of treatment and may require additional information about the long-term effect of anticonvulsant drugs. Many participants, as we have also shown, made adjustments to their medication regimens covertly. Rather than judging these acts negatively, we would argue that clinicians should be encouraged to foster an environment in consultations which allows patients to talk openly about their medication use to help ensure any alterations to the timing and size of doses are done safely and with appropriate support in place. In doing so, we would further argue that, to truly support PwTN, clinicians should go beyond simply listening to their concerns and strive to understand the profound impact of TN on their daily lives, in order to foster empathy and trust. Ultimately, an individualised, patient-centered approach is essential, to help ensure that treatment plans are not only medically effective but also aligned with each patient's personal circumstances, preferences and needs.

This study has sought to enhance understanding of how PwTN experience and manage their condition. By utilising an interview design, it has been possible to provide a greater depth of insight than could have been achieved using other methods, including questionnaires, ¹³ and focus groups. ^{25 , 26} Our study also benefitted from the input of PwTN into its design as this allowed an otherwise voiceless group of individuals to be heard. As a result of recruiting participants online, it is possible that an atypical group of PwTN were interviewed; indeed, our sample was skewed towards White, well-educated individuals. To address these shortcomings, future research could focus upon the experiences of members of Black and minority ethnic groups and those living in poverty, including those recruited directly from clinical settings. Additional research could also consider the perspectives and experiences of healthcare providers to better understand the kinds of information, training and support they might need to help ensure PwTN are given the holistic care that this kind of biographically disruptive condition both invites and requires.