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It began on a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually start with sudden, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, 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 fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches 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 molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a