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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis 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 winning tickets for a major concert, only to have an episode inside a facility.

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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 book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a