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It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually 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 moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. Longer or more intense 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 side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a