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It was a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. Then came rapid shocks, like electric shocks. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. 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. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook 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 clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction 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 inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

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 head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading specialists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a