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It was a gloomy Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came quick shocks, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort 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. Cluster headaches typically start with sudden, severe pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value 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 documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are handled with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a