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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by quick stabs, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain around a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and continues for as long as 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 periodic cycles; others have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the attack passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered 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 updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a