🔗 Share this article

It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation sprang behind my right eye. This was followed by quick stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks usually start with sudden, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

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

Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value 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 first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a