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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate 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 described across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his victims' heads.

Historical medical texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, 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 recovered.

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

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from 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 teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a