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It began on a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, 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 looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls 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 comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

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,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough 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? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with occasional attacks are managed with acute therapy alone. More prolonged or more intense bouts 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 reduces nerve activity.

The national guidance need updating to reflect a