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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my right eye. It was followed by rapid jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several triggers, 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 attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning 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 earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a