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It began on a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind one eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers 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, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout 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 ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions 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 “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international medical 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 artery which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, 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 molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a