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It began on a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort around one eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport 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 lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky 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 remembers winning 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 earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a