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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. It was followed by quick shocks, like electric shocks. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain around one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, excruciating agony focused on a single eye that reaches its peak 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, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky 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, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a