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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain erupted behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

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

Cluster headaches typically start with severe discomfort behind one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, 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 family often interpreted her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She especially hated 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 incapacitation caused by the worst episodes. “It robs you of the small liberties 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 account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with occasional attacks are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a