🔗 Share this article

It began on a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain around one eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Cluster headaches typically start with abrupt, excruciating agony around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook 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 office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation 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 history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a