🔗 Share this article

It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain around one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically begin with abrupt, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a