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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually start with abrupt, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks 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 symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic attacks took its effect. 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 family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the disorder note this.

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

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a