🔗 Share this article

It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. Then came quick shocks, like electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a