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It was a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind one eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support finally 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 relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable attacks took its effect. 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 children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

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

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

The disorder were only formally classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in treating the condition explain this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a