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It was a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain around one eye that persists up to several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within minutes and continues 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 perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

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

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly hated 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 most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published 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 prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a