Why TN

What is trigeminal neuralgia

Trigeminal neuralgia (“TN”) is a rare, long-term condition characterised by sudden, recurring episodes of excruciating facial pain. It has a profound impact on sufferers’ quality of life, in some cases leading to suicide. It is estimated that there are around 45,000 sufferers in the UK, with a peak presentation at 55 -70 years. Trigeminal neuralgia sufferers often experience profound anxiety and depression that all contribute to a decreased quality of life.

Patients often face:
• delayed diagnosis
• frequent misdiagnosis
• inappropriate or ineffective treatment pathways

Physicians who are expert in treating TN are aware that many patients do not gain timely access to healthcare services or correct management of their disease.

Earlier diagnosis and the right treatment pathway would materially reduce both clinical and psychological burden.

Zakrzewska J.M. et al. Evaluating the impact of trigeminal neuralgia. Pain, 01 Jun 2017, 158(6):1166-1174.
Evaluating the impact of trigeminal neuralgia. – Abstract – Europe PMC

Antonaci. F. et al. Pitfalls in recognition and management of trigeminal neuralgia. The Journal of Headache and Pain (2020) 21:82. Pitfals in recognition and management of trigeminal neuralgia | The Journal of Headache and Pain | Springer Nature Link

Patient testimonials

‘That first spasm of facial pain is unforgettable – unbearable electric shocks hammer-drilling my brain. A&E dismissed me with codeine, my puzzled GP recommended ibuprofen. My dentist, perplexed by the agony emanating from a healthy tooth, regretfully extracted it. But afterwards the pain was still there! I Googled ‘phantom tooth pain’ and found ‘trigeminal neuralgia’, the description fitted. My GP demurred; during her 40 years of experience she’d never encountered it and prescribed Tramadol, Temazepam, even morphine. But analgesics are ineffective for trigeminal neuralgia’

‘Unfortunately getting a diagnosis wasn’t easy. I had consultations with my GP and dentist who carried out procedures on teeth that he felt could be causing the problem, it was difficult to pinpoint exactly where the pain was as sometimes it was a sharp stabbing pain in my cheek or jaw and other times the pain came from individual teeth. Episodes of pain became very much worse after dental treatment to the point where I had difficulty even opening my mouth. After a vast number of consultations and several unnecessary root canals, I was eventually referred to the professor of facial pain Professor JZ at the Eastman dental hospital. It took only minutes for her to diagnose Trigeminal Neuralgia.

Fortunately, I was a suitable candidate for surgery and although an incredibly invasive procedure with significant risks I had reached a point where I couldn’t cope with the pain much longer.

Thanks to the skill of a truly amazing surgeon I have been pain free for over nine years.’

‘I think after a long period you are bound to get anxious and depressed because it is changing your life … I think the differences with ours (pain) is that you cannot, it’s unseen, people can’t tell, you know’

‘(I agree) that fear and anxiety play a big part and not only when you’re pain free but when you’re experiencing pain and you’re worried that it’s going to get worse’

‘I’ve not been able to eat solids for over 2 years. I had to blend all my foods so I’m always really anxious people are going to say oh, shall we go for a bite to eat or something like that and then I have to explain why I can’t.’

‘So I have had TN for 8 years and I did have time off work because … my job involves talking to a lot of people … you kind of start talking and then you think you can say what you are diagnosing… you look like you don’t know your job.’

‘I think it’s upsetting that the dentists don’t realize that TN could be the reason for your pain. Why don’t the dentists know in the first place to explore that option? Because I thought mine was dental as well, to start off with [ …] why don’t dentists consider that as an option before they start taking nerves out and messing about with your teeth? I find that really upsetting and annoying because I think the dentists should be more aware at the end of the day’

‘My work colleagues know that I have got something wrong, but they don’t fully understand what it is, and I think that is the thing, a lot of people don’t actually understand what it involves and how it affects you because you look normal, we all look as if there is nothing wrong with us … so there’s nothing obvious on the outside but they just don’t realize the pain and how it invades yourself when you have it. So, I find that difficult sometimes.’

‘had a really good experience with a GP but generally, GPs don’t understand that it’s such a rare condition they don’t understand what it is and they don’t understand that your medication can change, that you can be on something and then you need to reduce it and then you need to come up again or you need to change to a different drug.’

Recommended Care Pathway

One of the Institute’s founders, Professor Zakrzewska, an internationally recognised expert in TN, has developed a comprehensive care pathway at University College London Hospitals NHS Trust, drawing on over 25 years of clinical experience. This multidisciplinary care pathway has been independently audited and recognised for excellence: in 2019, the team were finalists in the BMJ Clinical Excellence Awards and received the UCLH Clinical excellence award as the leading team for quality of patient care. The care pathway has since been incorporated into the National Guidelines for Trigeminal Neuralgia published by the Royal College of Surgeons in 2021 and endorsed by all relevant UK stakeholders.

Capturing the experience of living with trigeminal neuralgia in art

‘Misery by Rosa Sepple’

Artist:

Rosa Sepple

Rosa Sepple is a professional mixed media painter and one of the UK’s most highly sought after and regarded artists.

In 2018, she was elected President of the Royal Institute of Painters in Water Colours — the first female member to receive this accolade in the Institute’s 187-year history.

The picture, ‘Misery’, was donated by Rosa to Professor Zakrzewska while she was working at the former Eastman Dental Hospital in London. It was intended to show patients that creative activity can have a significant and positive impact on pain and suffering. As Rosa worked on the picture, she realised that she no longer needed to depict as many devils, so she painted some of them out as her depression lifted. This seminal work helped launch her career in painting.

Deborah Padfield with Jillie Abbott and Chandrakant Khoda, ‘Untitled’ from the series Face2face, 2008–13. Digital Archival Prints. © Deborah Padfield

‘Depicts the electrical shock like character of trigeminal neuralgia pain’

Artist:

Deborah Padfield

Prof Deborah Padfield is a visual artist, Professor of Fine Art and Health at the Slade School of Fine Art, UCL and Reader in Arts & Health Humanities at St George’s, University of London. Collaborating with leading clinicians and academics, her research explores the potential of photographic images, co-created with people with pain, to facilitate doctor-patient communication.

She has worked with Prof Joanna Zakrzewska and patients and staff from UCLH, resulting in ongoing exhibitions, films and this recent publication.

Encountering pain: images as a tool for collaborative approaches to pain medicine. Deborah Padfield and Joanna M. Zakrzewska

Pain 167(6): p 1252-1262, June 2026. | DOI: 10.1097/

The aim was to cocreate strong images which could do justice to the intensity of patients’ individual experiences and to communicate to a wider audience beyond the art room or any therapeutic dynamic. One ambition was to use these images to help reduce stigma and create a communication tool for use with future patients.