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It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came rapid stabs, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, severe pain 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 several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties 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 portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. 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 had four surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

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

But consultant neurologists believe the official guidelines 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.” Brief bouts with infrequent episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a