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It was a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that lasts up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor 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 officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive therapy only. Longer or more intense bouts require preventives 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 side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a