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It began on a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. Then came quick stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around one eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

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

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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

Historical medical texts propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, 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 results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, 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 molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are managed with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a