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It began on a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. Then came rapid jolts, similar to lightning bolts. As each class progressed, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort behind a single eye that persists for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially 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 freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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

Ancient healing texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with infrequent attacks are managed with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a