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It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient 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 them through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a