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It was a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. 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 found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around erratic pain 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 cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties 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 facility.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Historical medical records propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major 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 recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer 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 talked me through oxygen therapy and medication until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are handled with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a