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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came quick shocks, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly 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 pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort behind a single eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating agony focused on 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 red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly 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 paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Historical healing records propose unusual remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a