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It began on a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. This was followed by quick jolts, like lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment only. Longer or more intense periods require preventives 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 head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a