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It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my one eye. It was followed by rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain around one eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a