Understanding Trigeminal Neuralgia: How Well Is It Diagnosed and Managed in UK General Practice?

Table of Contents

• Key Points
• What Is Trigeminal Neuralgia?
• Why This Research Matters
• How the Study Was Conducted
• Key Findings: Diagnosis, Medications, and Referrals
• What This Means for Patients
• Study Limitations
• Recommendations and Next Steps
• Frequently Asked Questions
• Source Information

Key Points

• A 2023 UK study of 55,842 primary care patients found trigeminal neuralgia prevalence was 22.3 per 10,000, higher than older estimates.
• Only 5.6% of 125 TN patients had all seven ICHD-3 diagnostic criteria documented in GP records.
• Fewer than half of TN patients were referred to secondary care, limiting access to specialist input and recommended imaging.
• 28% of TN patients had anxiety or depression, exceeding the national average of 17%, highlighting the need for mental health support.

What Is Trigeminal Neuralgia?

Trigeminal neuralgia (TN) is a long-term condition that causes sudden, severe facial pain, usually on one side of the face. The pain is often described as abrupt, short-lasting, stabbing, and recurrent, and it occurs in areas served by the trigeminal nerve — the nerve responsible for sensation in the face. TN is sometimes called the "suicide disease" because of the excruciating nature of the pain and its profound impact on mental health.

The condition takes a heavy toll on sufferers' quality of life and emotional wellbeing. Recent UK data has shown that poorly managed TN can lead to social isolation, depression, loss of employment, and relationship breakdowns. Studies in the United States have also found that patients with TN are at higher risk of suicide than the general population. A population-based study in Taiwan similarly highlighted increased risks of depression, anxiety, and sleep disorders after a TN diagnosis.

TN is generally considered a rare disease. A US study estimated the prevalence at 4.1 per 10,000 people. However, more recent studies from the UK and Holland, using primary care records, suggested a higher incidence of 8 to 12.6 per 100,000 people per year. TN is also linked to multiple sclerosis (MS) in about 5% to 10% of cases, and there are approximately 110,000 people with MS in the UK. Tumours account for a very small number of TN cases, and there are also reports of familial (genetic) links.

Why This Research Matters

Patients with facial pain almost always first visit their general practitioner (GP). Yet until now, there has been surprisingly little research into whether GPs are diagnosing and managing TN according to current guidelines. This study — published in the British Journal of Pain in 2023 — set out to answer two important questions:

1. How common is trigeminal neuralgia in UK primary care?
2. Are primary care clinicians following official guidelines for diagnosing and managing the condition?

Current guidance comes from two key sources. The International Classification of Headache Disorders, 3rd edition (ICHD-3) defines the diagnostic criteria for TN. The National Institute for Health and Care Excellence (NICE) Neuropathic Pain Guideline 173 recommends that patients be referred to specialist centres if carbamazepine — the gold-standard medication — is not tolerated, is contraindicated, or is ineffective, and if the pain is severe or limiting daily activities. Newer national guidelines also recommend that all patients with TN undergo imaging (such as MRI) to rule out secondary causes like MS or tumours.

How the Study Was Conducted

This multi-centre case study was carried out across five GP practices in the UK during 2019–2020, covering a total patient population of 55,842 people. The practices had 37 full-time GPs and 10 employed nurses between them. Patient records dating from 1970 to 2020 were reviewed.

The researchers used two primary care record systems — EMIS and SystmOne — to search for patients coded with trigeminal neuralgia (TN) or facial pain (FP). They searched for codes including "trigeminal nerve disorder," "trigeminal neuralgia," and "atypical facial pain." Initial results identified 218 patients; after excluding 61 who didn't meet the criteria, the final study group included 157 patients.

These 157 patients were divided into two groups:

• FP group (n = 54): Patients with facial pain, including codes for "pain in face," "facial pain," and "atypical facial pain."
• TN group (n = 103): Patients with diagnosed TN, including codes for "trigeminal neuralgia NOS" (not otherwise specified), "trigeminal nerve disorders," and "decompression of trigeminal nerve."

After a detailed review of patient records, 125 patients had a final diagnosis of TN. This number included 102 patients originally coded with TN, 17 patients initially coded with facial pain, and 6 patients who had no initial code.

The demographics of the two groups differed somewhat. In the FP group (n = 54), ages ranged from 34 to 86 years with a median age of 61.5; there were 12 males and 42 females. In the TN group (n = 102 initially), ages ranged from 20 to 91 with a median age of 58; there were 26 males and 76 females. The final TN group of 125 patients included 95 women and 30 men, confirming that TN affects women more often than men.

Key Findings: Diagnosis, Medications, and Referrals

Prevalence: Higher Than Previously Thought

This study found a TN prevalence of 0.223%, or 22.3 per 10,000 people. This is significantly higher than the older US estimate of 4.1 per 10,000. The prevalence varied considerably between practices, from 0.086% at Practice 3 (12,803 patients) and 0.098% at Practice 1 (11,209 patients) to a striking 0.364% at Practice 5 (17,026 patients). Practice 2 (3,712 patients) had a prevalence of 0.108%, and Practice 4 (11,092 patients) had 0.130%.

The authors note that this higher prevalence means it is "likely that all GPs will encounter such a patient" in their career — making it essential that GPs know how to recognise and treat the condition.

Incomplete Documentation of Diagnostic Criteria

The ICHD-3 criteria for TN require documentation of seven key features to confirm a positive diagnosis. These include the laterality (one-sided nature) of the pain, its distribution along trigeminal nerve branches, the quality or character of the pain (e.g., electric shock-like, shooting, stabbing), its intensity (severe), its duration (typically under 2 minutes), whether it occurs in episodic attacks, and the presence of trigger factors.

The results were striking — and concerning. Of the 125 patients diagnosed with TN:

• Only 7 patients (5.6%) had all seven ICHD-3 criteria documented in their records.
• Only 2 patients (1.6%) were positive for all seven symptoms.
• The average number of symptoms recorded per patient was just 3.7, despite seven being required for a positive diagnosis according to ICHD-3.

Looking at individual symptoms among the 125 TN patients:

• Laterality was the most consistently recorded symptom (88.0% of patients), and of those, 97.3% had unilateral (one-sided) pain, which matches TN.
• Only 46.4% of records documented whether the pain was episodic or continuous; of those, 89.7% reported episodic pain, consistent with TN.
• Severity was recorded in only 24.8% of patients, though 74.2% of those recorded reported severe pain — again matching the ICHD-3 criteria.

The researchers also compared symptom documentation between the FP and TN groups. Unilateral symptoms were recorded in 91.1% of FP patients versus 98.9% in the TN group. However, only 26.7% of FP patients had pain in a trigeminal nerve distribution, compared with 43.5% in the TN cohort. Both groups mostly reported episodic pain (91.7% for FP, 88.1% for TN).

Duration of pain was rarely recorded in either group (less than 20%). In the FP group, 30.0% reported pain lasting less than 2 minutes, versus 47.1% in the TN group. Pain character was recorded in 42.6% of FP patients and 53.9% of TN patients. Neuropathic-type descriptors that do not fit ICHD-3 TN criteria (such as "burning," "tingling," and "numbness") were documented in 21.7% of the FP group and 18.2% of the TN group. Other pain descriptors, including "ache," "light brushing sensation," and "pressure," were also noted. A trigger factor was recorded in 33.3% of FP patients but only 15.8% of TN patients.

Medication: Gold-Standard Treatment Underused

Carbamazepine is the current gold-standard first-line medication for TN, as recommended by NICE. The study found a large gap between the two groups in prescribing practices:

• 58.8% of patients coded with TN received carbamazepine, compared to just 16.7% of the FP group.
• 38.9% of the FP group were prescribed other neuropathic pain medications (such as amitriptyline or gabapentin), versus 23.5% in the TN group.

Looking specifically at the 125 patients with a final diagnosis of TN:

• 53.6% were prescribed carbamazepine.
• 24.0% were prescribed other neuropathic pain medications (amitriptyline, gabapentin).
• 10.4% were prescribed "other" medications, including cyclizine, immediate-release oral morphine, sumatriptan, and co-codamol.
• 12.0% received no medication at all at the time of initial diagnosis.

The researchers suggest the limited use of carbamazepine may reflect GPs' unfamiliarity with the drug, which is rarely used for other conditions. Since TN is a neuropathic pain condition, they suggest it would be reasonable to consider amitriptyline (if no contraindications) as a first-line option before a formal diagnosis is confirmed.

Referrals to Specialist Care

Referral patterns also revealed gaps in care. Among TN patients:

• 57 patients (47.4%) were referred to secondary care, but only 33 had a specialist letter available in their records.
• The most common referral destination was neurology (47.4%).
• Other referrals included dentists (12.3%), maxillo-facial specialists (12.3%), ear, nose, and throat (ENT) services (10.5%), and specialty pain clinics (8.8%).
• Five patients required a second referral: three to neurology, one to ENT, and one to a pain clinic.
• In 19 cases, referrals were made in the same year as the initial GP consultation.

In contrast, 66.7% of patients in the FP group were referred to secondary care, compared with only 38.2% of those coded with TN. This suggests that patients with TN may actually be less likely to receive specialist input than patients with more general facial pain.

None of the patients in this cohort received surgical treatment for their TN. It's unclear whether this was because medical management was adequate, patients preferred not to have surgery, or surgery was deemed unsuitable.

The Diagnostic Journey: Delays and Coding Changes

Twenty-two patients with a final diagnosis of TN were not initially coded with TN: five had no initial code, and 17 were initially coded as having facial pain. For 17 of these patients, their coding changed following a referral — five to neurology, three to ENT, three to pain clinic, three to maxillo-facial services, one to neurosurgery, one to A&E, and one to a dentist. The remaining five patients had their coding changed without any documented referral, and the reasons remain unclear.

This fragmented diagnostic journey is concerning. Data from a London specialist centre shows the mean delay in referral to secondary care can be between 4 and 7 years, and this can be significantly extended further in patients who receive multiple referrals to different specialities. GPs tend to refer to general neurologists, whereas dental surgeons refer to oral and maxillo-facial surgical teams, leading to further delays.

Mental Health and Comorbidities

The study found that 28.0% of TN patients had a concurrent diagnosis of anxiety or depression. This is notably higher than the national incidence of 17% in England (based on the 2014 Adult Psychiatric Morbidity Survey), emphasising the profound impact of TN on patients' mental health and quality of life. These patients with anxiety or depression made up 12.3% of all patients referred to secondary care.

Interestingly, no patients in either group had a concurrent diagnosis of multiple sclerosis. The authors note that the prevalence of TN in MS patients has previously been reported at approximately 4%, and TN can be the presenting symptom in 11% of MS patients.

What This Means for Patients

This study carries several important messages for patients living with — or suspected of having — trigeminal neuralgia.

First, you are not alone. The prevalence of 22.3 per 10,000 people is higher than older estimates suggested, meaning TN affects more people in the UK than previously recognised.

Second, diagnosis can be incomplete. The fact that so few patients had all seven ICHD-3 diagnostic criteria documented suggests that some patients may be misdiagnosed or experience delays before receiving the correct diagnosis. If your GP has not asked about all the key features of your pain — whether it's one-sided, sudden, short-lasting, stabbing, severe, and triggered by specific activities — you may want to proactively describe these details yourself.

Third, treatment options may be underused. Carbamazepine remains the first-line medication and can be highly effective for many patients. If you have not been offered carbamazepine, or if it hasn't worked for you, ask your GP about alternatives such as amitriptyline or gabapentin, and whether a referral to a specialist pain clinic or neurologist could help.

Fourth, imaging matters. New national guidelines recommend that all patients with TN undergo imaging (such as MRI) to rule out secondary causes like MS or tumours. Since fewer than half of TN patients in this study were referred to secondary care, many may be missing out on this important step.

Fifth, mental health support is essential. With 28% of TN patients also experiencing anxiety or depression — well above the national average of 17% — it's vital to seek help for the emotional toll of living with chronic pain, not just the physical symptoms.

Study Limitations

As with any research, this study has limitations that should be considered when interpreting the results.

Sample size and statistical power: The sample sizes were too small to complete a full statistical analysis looking for significant differences between the FP and TN groups, particularly in determining the causes of misdiagnosis.

Prevalence estimate: The prevalence data was not adjusted for factors such as patients moving between practices, and the exact dates from which records began were not determined.

Potential selection bias: The practices were chosen based on the placements of a group of medical students and doctors interested in trigeminal neuralgia, which could introduce bias. However, the students were randomly allocated to their practices by their medical school or training trust. Importantly, four of the five practices were in London, so the findings might not fully represent the whole of the UK.

Reliance on documentation: The study relied heavily on clinical documentation, which was often limited. It's unclear whether the lack of documentation was due to time pressures during consultations or a lack of awareness of diagnostic criteria among GPs. Some consultations were also missing entirely because patients had moved practices and their notes were not transferred.

Variability between practitioners: The study did not determine which practitioner reviewed each patient, and there may be differences in history-taking, diagnosis, and management plans depending on the experience of the doctor.

Two record systems: The use of two different primary care record systems (EMIS and SystmOne) may have introduced differences in the way codes were applied. Not all letters from secondary care could be identified, making it difficult to verify specialist diagnoses.

Recommendations and Next Steps

The authors offer several concrete recommendations to improve TN care in primary care settings:

1. Use condition-specific templates. Standardised templates would help GPs consistently document the seven ICHD-3 criteria and improve diagnostic accuracy.
2. Develop a decision-support tool for all patients presenting with acute facial pain in primary care. This could help improve diagnosis and allow care to be initiated earlier.
3. Refer all TN patients for imaging. Although rare, secondary causes of TN such as MS and acoustic neuromas must be excluded. National guidelines recommend imaging for all TN patients, and this should empower GPs to make non-urgent referrals for all TN patients to ensure an accurate diagnosis.
4. Establish local care pathways so that patients can be referred to secondary care more efficiently and to the correct service. Collaboration with dental surgeons may be appropriate before medical management, as dental pain is very common and can present with similar symptoms.
5. Disseminate national guidelines through journals read by GPs and on the Royal College of General Practitioners website, so that every GP is aware of current recommendations.
6. Conduct further epidemiological research using Clinical Practice Research Databases (CPRD) to confirm the true prevalence of TN, its co-morbidities, and how it is managed across the UK.

Patients can play an active role too. In a recent TN focus group study, patients themselves highlighted the need for faster referral to specialist centres. If you or a loved one experiences sudden, severe, one-sided facial pain, keep a diary of your symptoms — including their quality (stabbing, electric shock-like), duration, triggers, and severity — and take this information to your GP appointment. It can make a real difference in getting an accurate diagnosis sooner.

Frequently Asked Questions

What is trigeminal neuralgia and what does the pain feel like?

Trigeminal neuralgia is a long-term condition causing sudden, severe facial pain, usually on one side, in the area served by the trigeminal nerve. The pain is often described as abrupt, short-lasting, stabbing, and recurrent. It can severely impact quality of life and emotional wellbeing, sometimes leading to depression, social isolation, or loss of employment.

How common is trigeminal neuralgia in the UK?

A 2023 UK study across five general practices found a prevalence of 22.3 per 10,000 people, which is higher than older US estimates of 4.1 per 10,000. The study suggests that most GPs will encounter at least one patient with trigeminal neuralgia during their career, so awareness and accurate diagnosis are important.

What diagnostic criteria do doctors use for trigeminal neuralgia?

The ICHD-3 criteria list seven key features: one-sided pain, distribution along trigeminal nerve branches, electric shock-like or stabbing character, severe intensity, episodes lasting under 2 minutes, occurring in attacks, and triggered by specific factors. In a 2023 study, only 5.6% of patients had all seven documented in their GP records.

Should I have an MRI scan if I have trigeminal neuralgia?

Newer national guidelines recommend that all patients with trigeminal neuralgia undergo imaging, such as MRI, to rule out secondary causes like multiple sclerosis or tumours. However, the 2023 study found that fewer than half of TN patients were referred to secondary care, so many may miss this important step.

How does trigeminal neuralgia affect mental health?

The 2023 study found that 28% of trigeminal neuralgia patients also had anxiety or depression, higher than the national average of 17%. The condition's severe pain can lead to social isolation, relationship breakdowns, and even higher suicide risk, so seeking mental health support is essential alongside physical treatment.

What should I do if I think I have trigeminal neuralgia?

Keep a diary of your symptoms, including pain quality (e.g., stabbing, electric shock-like), duration, triggers, and severity. Bring this to your GP appointment. Consider asking about the seven ICHD-3 diagnostic criteria, discuss carbamazepine or other neuropathic pain medications, and ask whether a referral to a specialist or MRI is appropriate.

Source Information

Original Article: "Management of trigeminal neuralgia: A multi-centre case study in general practice"

Authors: Zofia J Zakrzewska, Parinaz Hosseini-Ashrafi, Ishrat Hussain, Zachary James Moulder, Jithu Subhash, Melissa Tan, Martin Ewart Johnson, and Joanna M Zakrzewska

Journal: British Journal of Pain, 2023, Vol. 17(6), pages 606–612

DOI: 10.1177/20494637231199332

Funding: The authors received no financial support for the research, authorship, and/or publication of this article.

Conflicts of Interest: The authors declared no potential conflicts of interest.

This patient-friendly article is based on peer-reviewed research. It is intended for educational purposes and does not constitute medical advice. Always consult a qualified healthcare professional regarding any medical condition or treatment decisions.