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It was a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid shocks, like lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple 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 took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

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

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing records propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a