🔗 Share this article

It was a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort around one eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, excruciating pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell 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 hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives 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 understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties 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 described across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches 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 key blood vessel which delivers blood to the brain. Leading specialists in treating the disorder explain this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a