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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

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

About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several 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 mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

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 pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a