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It was a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, excruciating agony around a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate 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 described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are handled with acute treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a