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It began on a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain around a single eye that persists up to three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

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

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate 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 attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 value 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 the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a research project 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 in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with abortive therapy only. Longer or more intense bouts 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 procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a