🔗 Share this article

It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid jolts, like lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually 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 office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky 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 small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent attacks are handled with abortive therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a