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It began on a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my one eye. Then came rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort behind one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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

Historical healing texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific 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 key artery that supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a