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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my one eye. Then came quick jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort around 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 start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks 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 family during the paralysis caused by the most severe episodes. “It steals from 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 facility.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

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 teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a