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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional episodes are handled with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a