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It began on a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain sprang behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class 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 typically begin with severe pain around one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms 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 facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Prominent experts in treating the disorder note this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of 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 national guidance need revising to reflect a