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It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my one eye. Then came rapid shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize 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 family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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

Historical healing records suggest unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

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 severe headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a