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It was a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort behind a single eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks typically begin with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. 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 headache patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, 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 interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “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 spirit who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

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

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from 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 misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a