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It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks usually start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw 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, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her father and then from her partner, 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 definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain 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 children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms 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 portable toilet.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms 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 multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.

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

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a