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It was a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks 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 deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked 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 simple freedoms we don't appreciate 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 the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

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 each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a