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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically start with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

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

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Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally 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 artery that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, 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 emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy only. Longer 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 cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a