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It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my one eye. This was followed by quick jolts, like electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain around one eye that persists for several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description 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 attacked his victims' heads.

Ancient medical texts propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed 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 major artery which delivers blood to the head. Prominent experts in treating the disorder explain 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 imaging machine. The results, published in a major medical publication, 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, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.

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

But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a