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It was a overcast Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. It was followed by quick shocks, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind a single eye that persists for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls 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 account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with acute treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a