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It began on a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain around one eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches 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 problem with a key artery which delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack eased.

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

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a