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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation erupted behind my one eye. Then came rapid jolts, like electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically begin with abrupt, severe pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple 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 portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose unusual treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a