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It began on a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain around a single eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. 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 worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E 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 twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with occasional attacks are managed with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a