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It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain erupted behind my one eye. It was followed by quick shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP 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 for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “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 fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a