🔗 Share this article

It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my right eye. Then came quick jolts, similar to electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that persists for several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a